March 16, 2011 Notes
It’s been a while since I made a progress report because I haven’t had much to report. I feel that I am still progressing, although slowly. I’m starting to see a few days where I have more function. The function that I am talking about is more of involuntary functions and my body’s core movement. For instance, I can get up and down easier without help more consistently. I can sit and read a book. I can comb my hair and wash my face slowly. I can do a little more on the computer.
A few weeks ago I went to the doctor for a sinus infection. After antibiotics I am feeling better. Any kind of illness depletes Dopamine. It’s been 13 weeks without any PD meds. I still experience withdrawal symptoms, though they are not as severe. I don’t need the medicines any longer that counter acted the withdrawal symptoms. I do still have body pain. I still have the usual old pain from my back injury. And I strained the tendon in my right shoulder from pushing myself up and down because all the weight is on my shoulders.
I keep myself entertained by watching movies, reading books, and doing computer work, and visiting with my family. Thank you to all of you who have sent me e-mails. I still maybe a few months before I start going out of the house.
I think I have come through the hardest part of coming off the PD meds. Some days I feel it will never end but most of the time I am still very optimistic. I miss my life but this is necessary. I am looking forward to spring and warmer weather. My hammock is waiting for me.
Showing posts with label Parkinsons. Show all posts
Showing posts with label Parkinsons. Show all posts
Wednesday, March 16, 2011
Friday, February 11, 2011
A Journey of One Day #14 Notes
February 11, 2011 Notes
Well I’m finally feeling well enough to think. I’ve had a four week long battle with the cough and cold crud. Today is the first day I have no runny nose or cough.
Now that my virus is clearing up I can see major improvements in my motor function. As I stated before having a virus in your body uses dopamine to fight it. In the last few days, I have been able to almost completely dress and undress myself. It’s still very slow, but I can do it. I can get up and down from a sitting position much easier, move around a bit more while laying down, and I’m not as fatigued. Today I felt so good that I did all the sales reports for the vending business on the computer. I need very little pain medication now. I still get a few body spasms and shakes in the early morning hours, but they are not bad. I’m swallowing easier and today I could actually lift a cup to drink instead of using a straw. My speech is still a bit slow and slurred, but it is getting a stronger tone to it. I'm sleeping pretty well at night, getting up only once.
Tomorrow will the nine-week mark of no PD drugs and thirteen weeks from the time I started tapering the drugs. This is all in keeping with the experiences that were recorded in the Parkinsons Recovery Project. However, I think mine is going much better than expected, according to the time line. I think it could take another few months for me to recover fully. One thing, that is a wonderful thing to get back, is just to be able to relax my muscles. I still have some balance issues but I am walking steadier now and taking bigger steps.
I have ventured out twice to church in the last three weeks. Once to Stake Conference, and once to see my grandaughter, Afton’s, blessing. I even walked up to the stand and bore my testimony. Being around people too much is still very tiring. Even though I am seeing improvements, it’s still going to be important for me to stay home and focus on me. In another two weeks, I may try to start driving Ariana to and from school. Another Mom from her school has been doing this for me all this time.
I’ve done a lot today and now I’m feeling tired, but it felt good to do something rather than lay or sit. It is working. I’m still hopeful.
Well I’m finally feeling well enough to think. I’ve had a four week long battle with the cough and cold crud. Today is the first day I have no runny nose or cough.
Now that my virus is clearing up I can see major improvements in my motor function. As I stated before having a virus in your body uses dopamine to fight it. In the last few days, I have been able to almost completely dress and undress myself. It’s still very slow, but I can do it. I can get up and down from a sitting position much easier, move around a bit more while laying down, and I’m not as fatigued. Today I felt so good that I did all the sales reports for the vending business on the computer. I need very little pain medication now. I still get a few body spasms and shakes in the early morning hours, but they are not bad. I’m swallowing easier and today I could actually lift a cup to drink instead of using a straw. My speech is still a bit slow and slurred, but it is getting a stronger tone to it. I'm sleeping pretty well at night, getting up only once.
Tomorrow will the nine-week mark of no PD drugs and thirteen weeks from the time I started tapering the drugs. This is all in keeping with the experiences that were recorded in the Parkinsons Recovery Project. However, I think mine is going much better than expected, according to the time line. I think it could take another few months for me to recover fully. One thing, that is a wonderful thing to get back, is just to be able to relax my muscles. I still have some balance issues but I am walking steadier now and taking bigger steps.
I have ventured out twice to church in the last three weeks. Once to Stake Conference, and once to see my grandaughter, Afton’s, blessing. I even walked up to the stand and bore my testimony. Being around people too much is still very tiring. Even though I am seeing improvements, it’s still going to be important for me to stay home and focus on me. In another two weeks, I may try to start driving Ariana to and from school. Another Mom from her school has been doing this for me all this time.
I’ve done a lot today and now I’m feeling tired, but it felt good to do something rather than lay or sit. It is working. I’m still hopeful.
Wednesday, January 19, 2011
A Journey of One Day #13 Notes
January 19, 2011 Notes
I’m nearing a milestone, I’m almost to the ten week mark. All of the withdrawal symptoms; stomach constriction, body pain, and the nighttime shakes are all rapidly decreasing now. Yesterday I went the whole day without feeling stomach constriction. The body pain seems to be traveling to different parts of my body; one part gets to feel better when another starts to hurt.
The cause of the body pain is very interesting to me. When I understand it, it’s easier for me to bare it patiently. And the pain pills help too. All through our body, in every system, but mostly in the structural, we have what are called, proprioceptors. The definition of this term is- ‘a sensory receptor, found chiefly in muscles, tendons, joints, and the inner ear, that detects the motion or position of the body or a limb by responding to stimuli arising within the organism’. So I am right in the thick of regenerating mine.
I’m starting to see some slight improvement in movement control. I can feed myself all the time now. I have been able to make myself a cup of herb tea, button a few buttons. I even folded up a blanket. I can get up and down easier from sitting to standing. And I’m starting to be able to move myself around on my bed. I only need to get up once during the night now. Swallowing is getting better and better. I’m able to eat more solid foods and I have put on a few pounds. I still need help with most things but I’m feeling a bit more independent.
I see a pattern of good and bad days. I realized a few days ago that I had a virus in my lungs and sinuses. Viruses deplete Dopamine. I started taking a viral herb formula and an antibiotic for a sinus infection. I feel the difference after two days. By that I mean that killing the virus has helped improve my movement. I still sleep a lot during the day. This feels so good. I haven’t slept this well or this much in ten years.
So my end goal is getting closer. I’m very optimistic about the future. I still need to take things slowly and not over-do. I’m sure there will be more set backs, that will always be followed by improvement. Thank you for all your prayers and support.
I’m nearing a milestone, I’m almost to the ten week mark. All of the withdrawal symptoms; stomach constriction, body pain, and the nighttime shakes are all rapidly decreasing now. Yesterday I went the whole day without feeling stomach constriction. The body pain seems to be traveling to different parts of my body; one part gets to feel better when another starts to hurt.
The cause of the body pain is very interesting to me. When I understand it, it’s easier for me to bare it patiently. And the pain pills help too. All through our body, in every system, but mostly in the structural, we have what are called, proprioceptors. The definition of this term is- ‘a sensory receptor, found chiefly in muscles, tendons, joints, and the inner ear, that detects the motion or position of the body or a limb by responding to stimuli arising within the organism’. So I am right in the thick of regenerating mine.
I’m starting to see some slight improvement in movement control. I can feed myself all the time now. I have been able to make myself a cup of herb tea, button a few buttons. I even folded up a blanket. I can get up and down easier from sitting to standing. And I’m starting to be able to move myself around on my bed. I only need to get up once during the night now. Swallowing is getting better and better. I’m able to eat more solid foods and I have put on a few pounds. I still need help with most things but I’m feeling a bit more independent.
I see a pattern of good and bad days. I realized a few days ago that I had a virus in my lungs and sinuses. Viruses deplete Dopamine. I started taking a viral herb formula and an antibiotic for a sinus infection. I feel the difference after two days. By that I mean that killing the virus has helped improve my movement. I still sleep a lot during the day. This feels so good. I haven’t slept this well or this much in ten years.
So my end goal is getting closer. I’m very optimistic about the future. I still need to take things slowly and not over-do. I’m sure there will be more set backs, that will always be followed by improvement. Thank you for all your prayers and support.
Sunday, January 16, 2011
A Journey of One Day #12 Notes
January 12, 2011 Notes
Withdrawal symptoms – I still experience body pain at the end of the day, diaphragm constriction, and the shakes at night. The DC is starting to lessen and is easier controlled. The shaking at night only happens after I have been asleep for awhile. It subsides if I get up and walk around. The Dilauded and Valium help only to a certain point now. The protein shakes have helped a lot with my energy levels and returning muscle strength.
I feel the withdrawal symptoms slowing down though I still have a few weeks before I really see improvement in motor function. My appetite is better though I still don’t have the coordination to eat enough. That will come.
Unlike taking a pill to fix this, it does not happen overnight. It is hard to wait for a natural body process to play out. But in the end it’s worth it! I’m continuing having bi-weekly Bowen therapy, Jin Shin Jitsyui therapy weekly, and taking the various supplements that are all part of this recovery process.
I think it is harder for you out there, my friends and family, to be patient than it is for me. It’s a complex situation to understand. I still feel good about my decision, I just need to keep waiting for time to do it’s work.
Withdrawal symptoms – I still experience body pain at the end of the day, diaphragm constriction, and the shakes at night. The DC is starting to lessen and is easier controlled. The shaking at night only happens after I have been asleep for awhile. It subsides if I get up and walk around. The Dilauded and Valium help only to a certain point now. The protein shakes have helped a lot with my energy levels and returning muscle strength.
I feel the withdrawal symptoms slowing down though I still have a few weeks before I really see improvement in motor function. My appetite is better though I still don’t have the coordination to eat enough. That will come.
Unlike taking a pill to fix this, it does not happen overnight. It is hard to wait for a natural body process to play out. But in the end it’s worth it! I’m continuing having bi-weekly Bowen therapy, Jin Shin Jitsyui therapy weekly, and taking the various supplements that are all part of this recovery process.
I think it is harder for you out there, my friends and family, to be patient than it is for me. It’s a complex situation to understand. I still feel good about my decision, I just need to keep waiting for time to do it’s work.
Monday, January 10, 2011
A Journey of One Day #11 Notes
Monday January 10, 2011 Notes
Cody was able to find a good formula called Spiru-tein as meal replacement shake for me to drink twice a day in between meals. I add two capsules of protein digestive aid and one capsule of Choline Bitartrate. It’s very easy to mix, no blender needed and it tastes great. I’ve already gained back one pound and I have more energy. The insomnia is starting to decrease. The only problem I have at night now is needing help to move every few hours. I’m sleeping a lot still during the day which is good. This means that my dopamine levels are increasing. The swallowing difficulties are also improving slightly. I still move very slow and speak very slow. I’m feeling a possible respiratory problem like bronchitis. I have a doctor checking that out today.
I decided to cut my hair very short since I couldn’t take care of it. A girl in Clair’s ward is a hair stylist and has a business in her home. She was kind enough to come to my home to cut my hair. So the next time you see me, you may not recognize me. I love the haircut.
I still believe that I am progressing well enough even though it may not seem like it to those who see me. After nearly two weeks of needing Tracy to feed me, I’ve been able to feed myself the past two days. It’s just over the eighth week mark and I am waiting for more improvements at the ten week mark.
Nichole’s baby looks like it’s going to be born early; probably this week. It’s a boy. We are waiting to hear anytime now. So I will not be going to Utah for obvious reasons just yet. When I am stronger and functioning on my own, I will make the trip to see my new grandson. It may not be for a few months.
The weather here continues to be very cold (30s and 40s) with a lot of rain so I continue to stay in the house. Keeping warm is so important in relation to how I can move. I continue to have a lot of body pain. The following statement is an excerpt from the book by Janis Walton-Hadlock called “Medications of Parkinson’s Disease”. It explains about the body pain. Quote: “Restoration of blood vessels, proprioception, and temperature sensitivities in the extremities are some of the most painful aspects of Parkinson’s recovery. Unmedicated patients may find these symptoms very painful. The recovering person that is reducing medications may find them even more so”. However, for me this pain is nothing like the pain I experienced with my back injury. I am weathering it with low doses of pain medicine. I am needing Valium for the muscle spasm’s less and less. All in all I still believe the process is going as well as could be expected and I still have the support of my doctor.
So don’t worry too much. I’ve been assured that I will make it through and recover my health.
Cody was able to find a good formula called Spiru-tein as meal replacement shake for me to drink twice a day in between meals. I add two capsules of protein digestive aid and one capsule of Choline Bitartrate. It’s very easy to mix, no blender needed and it tastes great. I’ve already gained back one pound and I have more energy. The insomnia is starting to decrease. The only problem I have at night now is needing help to move every few hours. I’m sleeping a lot still during the day which is good. This means that my dopamine levels are increasing. The swallowing difficulties are also improving slightly. I still move very slow and speak very slow. I’m feeling a possible respiratory problem like bronchitis. I have a doctor checking that out today.
I decided to cut my hair very short since I couldn’t take care of it. A girl in Clair’s ward is a hair stylist and has a business in her home. She was kind enough to come to my home to cut my hair. So the next time you see me, you may not recognize me. I love the haircut.
I still believe that I am progressing well enough even though it may not seem like it to those who see me. After nearly two weeks of needing Tracy to feed me, I’ve been able to feed myself the past two days. It’s just over the eighth week mark and I am waiting for more improvements at the ten week mark.
Nichole’s baby looks like it’s going to be born early; probably this week. It’s a boy. We are waiting to hear anytime now. So I will not be going to Utah for obvious reasons just yet. When I am stronger and functioning on my own, I will make the trip to see my new grandson. It may not be for a few months.
The weather here continues to be very cold (30s and 40s) with a lot of rain so I continue to stay in the house. Keeping warm is so important in relation to how I can move. I continue to have a lot of body pain. The following statement is an excerpt from the book by Janis Walton-Hadlock called “Medications of Parkinson’s Disease”. It explains about the body pain. Quote: “Restoration of blood vessels, proprioception, and temperature sensitivities in the extremities are some of the most painful aspects of Parkinson’s recovery. Unmedicated patients may find these symptoms very painful. The recovering person that is reducing medications may find them even more so”. However, for me this pain is nothing like the pain I experienced with my back injury. I am weathering it with low doses of pain medicine. I am needing Valium for the muscle spasm’s less and less. All in all I still believe the process is going as well as could be expected and I still have the support of my doctor.
So don’t worry too much. I’ve been assured that I will make it through and recover my health.
Friday, January 7, 2011
A Journey of One Day #10 Notes
January 7, 2011 Notes
I know you are all wondering how I am really getting along. The truth is, I’m not always sure. I just came out of two days of worsened symptoms. I believe this was due to the last Bowen therapy session. It is very interesting, the Bowen therapy, you lay on a massage table fully clothed. The practitioner, dose certain pressure and rolling movements on certain muscle groups from the head down to the toes. These movements reset the proprioceptors at reflex points. This in turn starts a wave of changes through out the central nervous system, which promotes healing of whatever ails you. You can find licensed practitioners on the Internet. That’s how I found mine.
At this point my body seems to be the weakest it’s ever been. To me it feels like just weak muscles and not true Parkinson’s anymore. This goes right along with the stories of the other patience I read about. My muscles are learning a new communication system of native neurotransmitters (not synthetic pills). And I no longer have any stores of adrenaline which I used to operate on.
Those of you, who have talked to me on the telephone, may wonder at my slow and slurred speech. Partly its due to the sedating medications I have taken to control the awful muscle spasms and violent shaking. What many doctors and even neurologists don’t know is that PD drugs are more addictive, therefore having worse withdrawal symptoms than Heroine, Cocaine, and the like.
Another thing that was brought to my attention is that I am not digesting protein. Undigested protein can cause havoc on the kidneys. I’ve had nearly constant kidney pain. So I purchased a protein digestive aid supplement that is helping alleviate that problem. The next concern is my diminishing weight. It’s very hard for me to eat The act of sitting up, lifting up my arm, chewing, swallowing, and breathing all at the same time is exhausting. My diet is limited to plain broth soups, oatmeal, water, and almond milk. Any dairy products create mucus that I choke on. Cody and Tracy are currently searching for a meal replacement drink that has a formula I can tolerate.
We recently purchased a used recliner that helps with my comfort levels quite a bit. Tracy and I came up with a new nighttime plan. He gets me situated on the couch before he goes to bed then sets his alarm for every two hours. He gets me up to walk around and use the bathroom. Then I can lay down again for another two hours, and so on. This is necessary since I can not move my own body. Again this is only temporary.
I got some better sleep last night, so I called this an “up” day. Thank you for your phone calls and E-mails. I’m not always able to talk or respond right away. That is why I have someone type these updates. It’s been nearly eight weeks now since I started this process. Everything I’ve experienced was to be expected. Just keep remembering that I know there is an end in sight. By that I mean recovering from Parkinson’s. Others have done it. So will I. Heavenly Father has been with me every step along the way. I certainly feel all of your prayers.
I am still not ready for visitors except my children. I will let you know when that changes. My love to all.
I know you are all wondering how I am really getting along. The truth is, I’m not always sure. I just came out of two days of worsened symptoms. I believe this was due to the last Bowen therapy session. It is very interesting, the Bowen therapy, you lay on a massage table fully clothed. The practitioner, dose certain pressure and rolling movements on certain muscle groups from the head down to the toes. These movements reset the proprioceptors at reflex points. This in turn starts a wave of changes through out the central nervous system, which promotes healing of whatever ails you. You can find licensed practitioners on the Internet. That’s how I found mine.
At this point my body seems to be the weakest it’s ever been. To me it feels like just weak muscles and not true Parkinson’s anymore. This goes right along with the stories of the other patience I read about. My muscles are learning a new communication system of native neurotransmitters (not synthetic pills). And I no longer have any stores of adrenaline which I used to operate on.
Those of you, who have talked to me on the telephone, may wonder at my slow and slurred speech. Partly its due to the sedating medications I have taken to control the awful muscle spasms and violent shaking. What many doctors and even neurologists don’t know is that PD drugs are more addictive, therefore having worse withdrawal symptoms than Heroine, Cocaine, and the like.
Another thing that was brought to my attention is that I am not digesting protein. Undigested protein can cause havoc on the kidneys. I’ve had nearly constant kidney pain. So I purchased a protein digestive aid supplement that is helping alleviate that problem. The next concern is my diminishing weight. It’s very hard for me to eat The act of sitting up, lifting up my arm, chewing, swallowing, and breathing all at the same time is exhausting. My diet is limited to plain broth soups, oatmeal, water, and almond milk. Any dairy products create mucus that I choke on. Cody and Tracy are currently searching for a meal replacement drink that has a formula I can tolerate.
We recently purchased a used recliner that helps with my comfort levels quite a bit. Tracy and I came up with a new nighttime plan. He gets me situated on the couch before he goes to bed then sets his alarm for every two hours. He gets me up to walk around and use the bathroom. Then I can lay down again for another two hours, and so on. This is necessary since I can not move my own body. Again this is only temporary.
I got some better sleep last night, so I called this an “up” day. Thank you for your phone calls and E-mails. I’m not always able to talk or respond right away. That is why I have someone type these updates. It’s been nearly eight weeks now since I started this process. Everything I’ve experienced was to be expected. Just keep remembering that I know there is an end in sight. By that I mean recovering from Parkinson’s. Others have done it. So will I. Heavenly Father has been with me every step along the way. I certainly feel all of your prayers.
I am still not ready for visitors except my children. I will let you know when that changes. My love to all.
Monday, January 3, 2011
A Journey of One Day #9 Notes
Friday December 31, 2010 Notes
On Saturday December 25, Christmas night, my symptoms of withdrawal escalated drastically. The symptoms were extreme rigidity in the torso and violent shaking, constriction in the diaphragm so as to create the illusion of shortness of breath. It was so scary I had my husband take me to the Emergency Room. They evaluated my symptoms and asked what I wanted them to do for me. I said my main concern was receiving relief from the extreme muscle spasms. At this point I hadn’t slept in three days. Every time I laid down I would choke and feel like I couldn’t breath. The shaking would get worse. So they put and “IV” in and initially gave me 2 mg of Valium. The muscle spasms were very painful. After 30 minutes when the symptoms and pain were still present I asked for more Valium and 2mg of Dilaudid. This did the trick and calmed my shaking and my pain. It also caused my respiratory rate to drop dangerously low though nobody realized it. They discharged me. But as soon as we got out to the car I went into a state of not being able to breath. They re-admitted me to the ER, gave me oxygen and monitored my respiratory symptoms and heart rate. After ten hours I went home functioning fairly well. I mostly slept for the next 24 hours. They sent me home with a Valium which I took when ever the shaking would come back. My neurologist called me to make sure I was ok. She is still supporting my decision and has referred one patient to read my blog posts. It seemed the Valium would decrease my movement in my hands so I switched to Dilaudid to help with the spasms and to help with sleep. I am still able to feed myself as long as someone prepares my food and I can use the bathroom on my own. Sometimes I need help getting my pants up. I have bouts of crying and frustration. But mostly I’m still determined to weather these weeks of withdrawal and adjustments in my brain. I’m still continuing to read about the experiences of the patients in the Parkinsons recovery group in Santa Cruz which offers me many valuable insights that help me understand the things my body is experiencing. At this point I am guarded in my projection of my complete recovery as to the exact time frame. There are so many stages of the recovery process and I’m not sure even with the experiences I’ve read about just how many of these stages I have gone through. I would like to think I’m nearly through with the withdrawal process. It has been 45 days or 6.5 weeks since I started the withdrawal. The experience of others show that it is at least a ten week process. I had one Bowen therapy during this time on December 28. I stopped all JSJ and supplements to let my body catch-up. I decided through some muscle testing to start taking Choline Bitartrate which is the precursor the body needs to make Acetyl Choline. This is the neuro-transmitter that moves the muscles. This is an often overlooked Neuro-transmitter. Dopamine and Acetyl Choline work together. I am also deficient in Acetyl Choline.
Monday 27 I took 5mg of Valium in two doses
Tuesday 28 I took 5mg of Valium in two doses
Wednesday 29 I took 5mg of Valium in one dose and slept till 4:00 am.
At this point my fingers were not moving. The muscle spasms have stopped.
Thursday 30 I tried Dilaudid instead to help with the night time muscle spasms and to help me sleep. It worked well. An interesting observation I’ve made is that Dilauded effects me differently now that I am off PD drugs. It used to keep me awake. Now it sedates me.
Friday December 31 I took 2mg Dilaudid at 4:30 am and again at 10:30am. I took 1500 mg of Choline Bitartrate at 1:00 pm. I’m continuing to feel the heaviness in my sleep. My body temperature still fluctuates dramatically from hot to cold.
Sunday January 2, 2011 Notes
Last night at 10:00 I took 1mg Dilaudid and 1.25mg of Valium. I couldn’t relax and I had a lot of body pain. I slept for a few hours. After that I didn’t do very well all night At one point I put pillows on the bathroom floor. I got comfortable there on my side because its warmer in the bathroom and I couldn’t get warm. I was feeling still tired this morning and woke up with whole body muscle cramping. Whenever I wake up I do it with a shake. I’ve read this is common for recovering PD’ers. It could be better phrased “I shake awake”. As far as my movement goes, I take small steps unless I really think about it then I can take larger ones. It’s difficult to lift my arms over my head but I can do it slowly. Sometimes I can lift a spoon to my mouth and sometimes I can’t. Drinking with a straw is easier because I can’t lift my cup and tilt my head back at the same time. I know now that any swallowing difficulty is simply a muscle spasm of the esophagus and is a withdrawal symptom that will eventually go away. I can smile if I hear something funny enough. My voice comes and goes in volume. I have a hard time making the “P” sound. I can if I think about it and say it slow. I have a hard time standing up straight. My arms don’t swing when I walk. I’ve actually been able to sign my name twice in the last three weeks. The writing looked like mine but was a bit smaller. Once I’m sitting its difficult to move my body while I’m sitting. Unless I have enough momentum I don’t get up out of the sitting position very easily. I still can’t control saliva very well. Today I’m feeling increasing body pain and feel very week muscle wise. This is all to be expected. It has been seven weeks since I started reducing my meds and three since I have had zero PD medication. I still cry easily. That’s a good thing. It doesn’t mean I’m depressed. I try hard not to cry though because then my nose drips. My fingers are not working at all.
On Saturday December 25, Christmas night, my symptoms of withdrawal escalated drastically. The symptoms were extreme rigidity in the torso and violent shaking, constriction in the diaphragm so as to create the illusion of shortness of breath. It was so scary I had my husband take me to the Emergency Room. They evaluated my symptoms and asked what I wanted them to do for me. I said my main concern was receiving relief from the extreme muscle spasms. At this point I hadn’t slept in three days. Every time I laid down I would choke and feel like I couldn’t breath. The shaking would get worse. So they put and “IV” in and initially gave me 2 mg of Valium. The muscle spasms were very painful. After 30 minutes when the symptoms and pain were still present I asked for more Valium and 2mg of Dilaudid. This did the trick and calmed my shaking and my pain. It also caused my respiratory rate to drop dangerously low though nobody realized it. They discharged me. But as soon as we got out to the car I went into a state of not being able to breath. They re-admitted me to the ER, gave me oxygen and monitored my respiratory symptoms and heart rate. After ten hours I went home functioning fairly well. I mostly slept for the next 24 hours. They sent me home with a Valium which I took when ever the shaking would come back. My neurologist called me to make sure I was ok. She is still supporting my decision and has referred one patient to read my blog posts. It seemed the Valium would decrease my movement in my hands so I switched to Dilaudid to help with the spasms and to help with sleep. I am still able to feed myself as long as someone prepares my food and I can use the bathroom on my own. Sometimes I need help getting my pants up. I have bouts of crying and frustration. But mostly I’m still determined to weather these weeks of withdrawal and adjustments in my brain. I’m still continuing to read about the experiences of the patients in the Parkinsons recovery group in Santa Cruz which offers me many valuable insights that help me understand the things my body is experiencing. At this point I am guarded in my projection of my complete recovery as to the exact time frame. There are so many stages of the recovery process and I’m not sure even with the experiences I’ve read about just how many of these stages I have gone through. I would like to think I’m nearly through with the withdrawal process. It has been 45 days or 6.5 weeks since I started the withdrawal. The experience of others show that it is at least a ten week process. I had one Bowen therapy during this time on December 28. I stopped all JSJ and supplements to let my body catch-up. I decided through some muscle testing to start taking Choline Bitartrate which is the precursor the body needs to make Acetyl Choline. This is the neuro-transmitter that moves the muscles. This is an often overlooked Neuro-transmitter. Dopamine and Acetyl Choline work together. I am also deficient in Acetyl Choline.
Monday 27 I took 5mg of Valium in two doses
Tuesday 28 I took 5mg of Valium in two doses
Wednesday 29 I took 5mg of Valium in one dose and slept till 4:00 am.
At this point my fingers were not moving. The muscle spasms have stopped.
Thursday 30 I tried Dilaudid instead to help with the night time muscle spasms and to help me sleep. It worked well. An interesting observation I’ve made is that Dilauded effects me differently now that I am off PD drugs. It used to keep me awake. Now it sedates me.
Friday December 31 I took 2mg Dilaudid at 4:30 am and again at 10:30am. I took 1500 mg of Choline Bitartrate at 1:00 pm. I’m continuing to feel the heaviness in my sleep. My body temperature still fluctuates dramatically from hot to cold.
Sunday January 2, 2011 Notes
Last night at 10:00 I took 1mg Dilaudid and 1.25mg of Valium. I couldn’t relax and I had a lot of body pain. I slept for a few hours. After that I didn’t do very well all night At one point I put pillows on the bathroom floor. I got comfortable there on my side because its warmer in the bathroom and I couldn’t get warm. I was feeling still tired this morning and woke up with whole body muscle cramping. Whenever I wake up I do it with a shake. I’ve read this is common for recovering PD’ers. It could be better phrased “I shake awake”. As far as my movement goes, I take small steps unless I really think about it then I can take larger ones. It’s difficult to lift my arms over my head but I can do it slowly. Sometimes I can lift a spoon to my mouth and sometimes I can’t. Drinking with a straw is easier because I can’t lift my cup and tilt my head back at the same time. I know now that any swallowing difficulty is simply a muscle spasm of the esophagus and is a withdrawal symptom that will eventually go away. I can smile if I hear something funny enough. My voice comes and goes in volume. I have a hard time making the “P” sound. I can if I think about it and say it slow. I have a hard time standing up straight. My arms don’t swing when I walk. I’ve actually been able to sign my name twice in the last three weeks. The writing looked like mine but was a bit smaller. Once I’m sitting its difficult to move my body while I’m sitting. Unless I have enough momentum I don’t get up out of the sitting position very easily. I still can’t control saliva very well. Today I’m feeling increasing body pain and feel very week muscle wise. This is all to be expected. It has been seven weeks since I started reducing my meds and three since I have had zero PD medication. I still cry easily. That’s a good thing. It doesn’t mean I’m depressed. I try hard not to cry though because then my nose drips. My fingers are not working at all.
Thursday, December 23, 2010
A Journey of One Day #8 Notes
Thursday December 23, 2010 notes
On Saturday the 18th my withdrawal symptoms hit their worst. I was completely frozen except for walking. My hands could not move, I could barely speak and for the first time I didn’t know what to do and I was feeling hopeless. Earlier in the day I began to cry and could not stop but didn’t know why exactly I was crying. Cody had come to see me that evening and we had a good visit; a very emotional but positive interchange. About 7:00 PM I decided to call Elaine Morris to have her help me do some JSJ. She agreed to help. She worked on me for two hours at which time I was moving again. That is, to the degree that I was before the extreme freezing set in. That night I was racked with whole body spasms most of the night. In the morning I took a Dilaudid which calmed down the spasms. I then slept most of the day until about 1:00 PM. My hands are still not moving well enough to function on my own. I went back to Elaine’s again. She did more JSJ for another two hours. I had another hard night though not as many body spasms. On Monday morning I had Tracy go get some Lobelia tincture to help with the body spasms. It seemed to help taking twenty drops at a time. I didn’t want to rely too much on Dilaudid since it is also habit forming. I went back to Elaine’s again and met Tdok. Elaine and I discovered through muscle testing that I had the trapped emotion of shame in my hands and I needed to release it in order to regain the movement of my hands with or without Dopamine. We used the Emotion Code method of 110 swipes with a magnet. I will continue to go to Elaine’s each day to have her do JSJ until I can do it on myself. I am noticing a gradual increase (very gradual) of improvement in all aspects of motor function. It seems that my hands are the last place that my body sends Dopamine for now. Last night I slept on Ariana’s bed to try to get through the night without waking up Tracy. Her bed is situated such that I can lay more comfortably and turn myself over. Her room is also quite warmer. So I need less blankets. I found that I rested fairly well. I woke up at 12:30, 2:30, 3:30, 5:30, and then got up at 7:00. Even though I woke up a lot I went back to sleep each time and slept fairly well until my body got too stiff in that position. I didn’t have as many body spasms and only used Lobelia. I’m going to increase the frequency of doses of Lobelia to every two hours to help the stomach cramping and the overall body cramping. I believe that the trouble that I have with swallowing is simply cramping of the esophagus and it is also a withdrawal symptom. I believe the JSJ is playing a big role in the speed and ease of my recovery. I will continue to have it done or do it everyday. My Dopamine system is still awakening and my muscles are still weak from the absence of the adrenaline I have lived on for ten years now. I am convinced that my slowness of movement is due to, in part, a mere general weakness of muscle tissue rather than a Dopamine deficiency. I have learned in my readings of Janice Walton-Hadlock that as I continue to recover my Dopamine system, it will be important to avoid extreme cold, any kind of infectious disease like a virus or bacteria and social stress. These three things are all big Dopamine depleters. By the way these last few posts I have had someone else typing as I am not able to unless I want it to take me three days. And thanks to my dear husband and daughter, I get dressed, bathed and fed everyday. I believe the worst of the non-function days are behind me.
On Saturday the 18th my withdrawal symptoms hit their worst. I was completely frozen except for walking. My hands could not move, I could barely speak and for the first time I didn’t know what to do and I was feeling hopeless. Earlier in the day I began to cry and could not stop but didn’t know why exactly I was crying. Cody had come to see me that evening and we had a good visit; a very emotional but positive interchange. About 7:00 PM I decided to call Elaine Morris to have her help me do some JSJ. She agreed to help. She worked on me for two hours at which time I was moving again. That is, to the degree that I was before the extreme freezing set in. That night I was racked with whole body spasms most of the night. In the morning I took a Dilaudid which calmed down the spasms. I then slept most of the day until about 1:00 PM. My hands are still not moving well enough to function on my own. I went back to Elaine’s again. She did more JSJ for another two hours. I had another hard night though not as many body spasms. On Monday morning I had Tracy go get some Lobelia tincture to help with the body spasms. It seemed to help taking twenty drops at a time. I didn’t want to rely too much on Dilaudid since it is also habit forming. I went back to Elaine’s again and met Tdok. Elaine and I discovered through muscle testing that I had the trapped emotion of shame in my hands and I needed to release it in order to regain the movement of my hands with or without Dopamine. We used the Emotion Code method of 110 swipes with a magnet. I will continue to go to Elaine’s each day to have her do JSJ until I can do it on myself. I am noticing a gradual increase (very gradual) of improvement in all aspects of motor function. It seems that my hands are the last place that my body sends Dopamine for now. Last night I slept on Ariana’s bed to try to get through the night without waking up Tracy. Her bed is situated such that I can lay more comfortably and turn myself over. Her room is also quite warmer. So I need less blankets. I found that I rested fairly well. I woke up at 12:30, 2:30, 3:30, 5:30, and then got up at 7:00. Even though I woke up a lot I went back to sleep each time and slept fairly well until my body got too stiff in that position. I didn’t have as many body spasms and only used Lobelia. I’m going to increase the frequency of doses of Lobelia to every two hours to help the stomach cramping and the overall body cramping. I believe that the trouble that I have with swallowing is simply cramping of the esophagus and it is also a withdrawal symptom. I believe the JSJ is playing a big role in the speed and ease of my recovery. I will continue to have it done or do it everyday. My Dopamine system is still awakening and my muscles are still weak from the absence of the adrenaline I have lived on for ten years now. I am convinced that my slowness of movement is due to, in part, a mere general weakness of muscle tissue rather than a Dopamine deficiency. I have learned in my readings of Janice Walton-Hadlock that as I continue to recover my Dopamine system, it will be important to avoid extreme cold, any kind of infectious disease like a virus or bacteria and social stress. These three things are all big Dopamine depleters. By the way these last few posts I have had someone else typing as I am not able to unless I want it to take me three days. And thanks to my dear husband and daughter, I get dressed, bathed and fed everyday. I believe the worst of the non-function days are behind me.
Friday, December 17, 2010
A Journey of One Day #7 Notes
December 17, 2010 Notes
I recently received a supplement called ‘Aquas’; a cell hydration formula. I believe it was developed by John Colemen of Australia, who recovered himself from Parkinsons. It’s a homeopathic formula which works on a cellular level in the body. I took the maximum dosage recommended on the bottle (7 drops) three times in thirty-six hours. I took a nose dive in function. The formula had triggered a release of toxins from my cells that now had to be processed. It was hard sliding backwards in function but I knew it would lift in a few days, and it did. So now my plan is to take the formula again starting with one drop. Homeopathics can be very powerful if used correctly. My goal is to get the most amount of recovery with the least amount of downtime in function. Today I saw a tiny bit of improvement in my motor function. I have been experiencing a flare up in my old nerve pain in my right leg caused from earlier back injuries. The new research shows that when you withdraw from these medications, the weakest part of your body is targeted with symptoms; but they are just symptoms only. I will continue to play cat and mouse with symptoms and help for the symptoms. When the nerve pain got too bad, I needed pain medicine. However, too much of this pain medicine could slow down my recovery process. Another acute symptom that is very painful is the abdominal cramping. I constantly feel like I have a ten-pound weight on my solar plexus. There is a drug that recovering addicts are prescribed to help with this which I took. I decided to research this drug (as I do with all drugs). What I found was that it is also an addictive substance that depresses the central nervous system. It worked well for the abdominal cramping but it will slow down my recovery process. So I called my herbal nutritionist guru friend here in Modest who has a health food store. He recommended a great herbal formula called “Herbal Muscle Cramp Formula”. It is also very potent and should be taken with caution. It is much easier on the central nervous system though and has worked well for the abdominal cramping. It is day 33 into my journey of going off of PD drugs. It has been 7 days since I took my last PD pill. Wow does it feel good to not live on a pill schedule. I believe now I will see a gradual improvement in function each day. It could take up to ten weeks; however, before I am done having withdrawal symptoms. I still have a lady come in everyday for five hours to help me. Hopefully I won’t need her too much longer. Tracy and Ariana are off work and out of school now until January 3. They take very good care of me. I actually went on three driving excursions with my helper to do some Christmas errands. I could drive ok, I just couldn’t get my seatbelt on by myself or get my money out of my wallet and I got very tired after the trips. So on I go.
I recently received a supplement called ‘Aquas’; a cell hydration formula. I believe it was developed by John Colemen of Australia, who recovered himself from Parkinsons. It’s a homeopathic formula which works on a cellular level in the body. I took the maximum dosage recommended on the bottle (7 drops) three times in thirty-six hours. I took a nose dive in function. The formula had triggered a release of toxins from my cells that now had to be processed. It was hard sliding backwards in function but I knew it would lift in a few days, and it did. So now my plan is to take the formula again starting with one drop. Homeopathics can be very powerful if used correctly. My goal is to get the most amount of recovery with the least amount of downtime in function. Today I saw a tiny bit of improvement in my motor function. I have been experiencing a flare up in my old nerve pain in my right leg caused from earlier back injuries. The new research shows that when you withdraw from these medications, the weakest part of your body is targeted with symptoms; but they are just symptoms only. I will continue to play cat and mouse with symptoms and help for the symptoms. When the nerve pain got too bad, I needed pain medicine. However, too much of this pain medicine could slow down my recovery process. Another acute symptom that is very painful is the abdominal cramping. I constantly feel like I have a ten-pound weight on my solar plexus. There is a drug that recovering addicts are prescribed to help with this which I took. I decided to research this drug (as I do with all drugs). What I found was that it is also an addictive substance that depresses the central nervous system. It worked well for the abdominal cramping but it will slow down my recovery process. So I called my herbal nutritionist guru friend here in Modest who has a health food store. He recommended a great herbal formula called “Herbal Muscle Cramp Formula”. It is also very potent and should be taken with caution. It is much easier on the central nervous system though and has worked well for the abdominal cramping. It is day 33 into my journey of going off of PD drugs. It has been 7 days since I took my last PD pill. Wow does it feel good to not live on a pill schedule. I believe now I will see a gradual improvement in function each day. It could take up to ten weeks; however, before I am done having withdrawal symptoms. I still have a lady come in everyday for five hours to help me. Hopefully I won’t need her too much longer. Tracy and Ariana are off work and out of school now until January 3. They take very good care of me. I actually went on three driving excursions with my helper to do some Christmas errands. I could drive ok, I just couldn’t get my seatbelt on by myself or get my money out of my wallet and I got very tired after the trips. So on I go.
Tuesday, December 14, 2010
A Journey of One Day #6 Notes
I am seeing now that I don’t have any medication going into my brain, I can distinguish real movement from synthetically induced movement. I do the JSJ (Jin Shin Jitsyui) three times a day, and it always spurs more natural movement. I had a few minutes of perfect hand movement last night. I slept better than I have in the last four weeks. I also woke up with better hand movement than I have had in the last four weeks. As the day wore on I got slower again, and then after more JSJ movement picked up again slightly. I believe that proper meals, hydration, and positive thinking all play an integral role in my movement. I am feeling very sleepy and some muscle weakness, but it is not extreme. And usually if I sleep during the day, even for a short time, I wake up with good had movement. It only lasts sometimes for fifteen minutes or less but that’s ok for now. I will call this phenomenon HMWS (hands move with sleep). I find that I’m laughing more and easily. I’m enjoying the taste of food for the first time in years; meaning real food, not junk food. Now remember I have not taken any synthetic dopamine in 3 days. This is proof that my brain is re-awakening to produce native dopamine. It will take some time (not sure how much) for my muscles to learn how, or rather, remember how to use native dopamine. It’s all good. I feel it coming back to me. There are times when I’m doing JSJ, when my body is flooded with a sense of euphoria. I’m assuming this is dopamine and other neurotransmitters digging into forgotten territory- tired, atrophied muscles.
The human body is amazing…………………………
The human body is amazing…………………………
Monday, December 13, 2010
A Journey of One Day #5 Making Progress
It is day 31 into my journey to no drugs and no PD. I am now off of all medications for PD. My withdrawal symptoms have not been bad compared to some people’s experiences I have read about. My movement is still very slow. But I can still feed myself and go to the bathroom by myself. Thank Goodness! We hired a lady to come help take care of me during the day when I am alone, and to help with housework and meals. I am still doing weekly trips to Oakland for Bowen Therapy. I do daily Jin Shin Jitsyui Therapy by myself along with meditation and relaxation. The relaxation comes easy since I can’t do much else any way.
My feeling is that in a few weeks I will be moving again, pretty close to normal. Its still takes tremendous faith and self control to keep my fears in check. But on this score God has assured me that it will be as I have said.
I find that I am surprised that I am not more restless being constantly in the house. But I am actually enjoying it. This is due to the fact that my brain is no longer being driven by adrenaline. For probably the first time my body is learning to exist and move with all the correct brain chemicals. It could take another six months for my brain and body to be completely in sync. I also see how my thought processes are also now being triggered in the correct way. In the morning when I look at my face in the mirror I see softer eyes and they seem more real.
I shared my intentions of quitting PD drugs with my neurologist last week. I was pleasantly surprised at her reaction. She told me after I had explained it all to her that she thought it was reasonable. She asked me to stay in touch with her and report my progress. I thanked her for being open and for really listening to me. She said if she were in my place, she may do the same thing. She knows that I am the kind of person that needs to look for what’s best for me and my health and she said as my doctor she will be supportive and help me in any way she can. The big kicker here was when she said she would like to share my experience and knowledge with some of her other patients who are at about the same place I was in dealing with their PD. This made me very happy. Thank you Dr. Hansrote! I am keeping an extensive journal of each day during this process. This could be very helpful for others. It is how I was able to safely come to this point; by reading what others had done. I will be forever grateful to those individuals that were part of the Parkinson’s Recovery Project in Santa Cruz, CA. And also to John Coleman, a Naturopath in Australia for his work with Parkinson’s recovery. You could call these people pioneers of sorts.
I have come to the conclusion that one’s journey is always built upon another’s journey. That’s why we are here on this earth; to help one another along the way. I believe my journey will see brighter days ahead. I hope to be able to travel to Utah the first week of February when my grandson, Beckham, is born. My second grandaughter was born December 9. She is named Afton. These two sweet, noble spirits, being born at such a time, are a symbol of my ‘new life’ ahead. We’ll be starting out together!!
My feeling is that in a few weeks I will be moving again, pretty close to normal. Its still takes tremendous faith and self control to keep my fears in check. But on this score God has assured me that it will be as I have said.
I find that I am surprised that I am not more restless being constantly in the house. But I am actually enjoying it. This is due to the fact that my brain is no longer being driven by adrenaline. For probably the first time my body is learning to exist and move with all the correct brain chemicals. It could take another six months for my brain and body to be completely in sync. I also see how my thought processes are also now being triggered in the correct way. In the morning when I look at my face in the mirror I see softer eyes and they seem more real.
I shared my intentions of quitting PD drugs with my neurologist last week. I was pleasantly surprised at her reaction. She told me after I had explained it all to her that she thought it was reasonable. She asked me to stay in touch with her and report my progress. I thanked her for being open and for really listening to me. She said if she were in my place, she may do the same thing. She knows that I am the kind of person that needs to look for what’s best for me and my health and she said as my doctor she will be supportive and help me in any way she can. The big kicker here was when she said she would like to share my experience and knowledge with some of her other patients who are at about the same place I was in dealing with their PD. This made me very happy. Thank you Dr. Hansrote! I am keeping an extensive journal of each day during this process. This could be very helpful for others. It is how I was able to safely come to this point; by reading what others had done. I will be forever grateful to those individuals that were part of the Parkinson’s Recovery Project in Santa Cruz, CA. And also to John Coleman, a Naturopath in Australia for his work with Parkinson’s recovery. You could call these people pioneers of sorts.
I have come to the conclusion that one’s journey is always built upon another’s journey. That’s why we are here on this earth; to help one another along the way. I believe my journey will see brighter days ahead. I hope to be able to travel to Utah the first week of February when my grandson, Beckham, is born. My second grandaughter was born December 9. She is named Afton. These two sweet, noble spirits, being born at such a time, are a symbol of my ‘new life’ ahead. We’ll be starting out together!!
 |
| Afton 4 hours old |
Beckham ^shopping with Mom
MERRY CHRISTMAS !
Friday, December 3, 2010
A Journey of One Day #4 A few notes
Friday, December 2
I wake up moving slow, I get slower within two hours, It’s hard to fix my own breakfast but I do it. Feeding myself is very slow. I choke easily so I keep the foods soft or chew very well. I tell myself again and again this is temporary.
My main focus needs to be eating well, keeping warm, no anxiety causing situations, sleep, meditation and therapy (Bowen and Jin shin Jitsyui).
In three weeks I have reduced one drug by 75% and the other one by 50%.
My withdrawal symptoms have been mild so far. My brain is constantly working to adapt to these changes. I can see now how the available dopamine moves from the limbic area (automatic body functions), to the frontal lobe (thought processing), and to the motor area. As the dopamine enhancing drugs are reduced, my brain is awakening its own dopamine production. It takes time. No quick fix here.
My voice and word enunciation are affected by the drug withdrawal. In fact all the previous symptoms caused by the PD drugs become w/d symptoms; insomnia, severe muscle cramping (only in my rt foot). Other w/d symptoms are the chills and sweats, diaphragm constriction, erratic, traveling body pain, and bouts of extreme emotion.
I move better as the day progresses for small time periods. It will all improve more rapidly after I am off the drugs.
When I’m not doing all of the above, I pass the time by watching movies, listening to audio scriptures downloaded from lds.org, and documenting this experience.
I’m doing better than I expected. Keep praying for me.
My journey is not in vain. One precious day at a time, moment by moment, slow and steady wins the race.
Sending my love-
Mom/ Tracy
I wake up moving slow, I get slower within two hours, It’s hard to fix my own breakfast but I do it. Feeding myself is very slow. I choke easily so I keep the foods soft or chew very well. I tell myself again and again this is temporary.
My main focus needs to be eating well, keeping warm, no anxiety causing situations, sleep, meditation and therapy (Bowen and Jin shin Jitsyui).
In three weeks I have reduced one drug by 75% and the other one by 50%.
My withdrawal symptoms have been mild so far. My brain is constantly working to adapt to these changes. I can see now how the available dopamine moves from the limbic area (automatic body functions), to the frontal lobe (thought processing), and to the motor area. As the dopamine enhancing drugs are reduced, my brain is awakening its own dopamine production. It takes time. No quick fix here.
My voice and word enunciation are affected by the drug withdrawal. In fact all the previous symptoms caused by the PD drugs become w/d symptoms; insomnia, severe muscle cramping (only in my rt foot). Other w/d symptoms are the chills and sweats, diaphragm constriction, erratic, traveling body pain, and bouts of extreme emotion.
I move better as the day progresses for small time periods. It will all improve more rapidly after I am off the drugs.
When I’m not doing all of the above, I pass the time by watching movies, listening to audio scriptures downloaded from lds.org, and documenting this experience.
I’m doing better than I expected. Keep praying for me.
My journey is not in vain. One precious day at a time, moment by moment, slow and steady wins the race.
Sending my love-
Mom/ Tracy
Monday, November 29, 2010
A Journey of One Day #3
Friday, November 26 The day after Thanksgiving
According to research in the recent neurology world, just thinking hopeful thoughts helps your brain to produce dopamine; the thing my brain lacks.
And according to the work and writings of Janice Walton-Hadlock, the newest pioneer (in my estimation) in conclusive PD patient help, dopamine has it’s use and need in many parts of the brain, not just the motor area. She also proves that the marvelous human brain makes no mistakes. It does whatever is necessary to protect itself to keep our bodies functioning at whatever level. It is man that makes mistakes with his/her actions, words, thoughts, with harmful drugs, etc. And if a brain which has taken significant injury due to emotional trauma and harmful drugs, it will need very specific actions to recover. The key here is that it is possible to recover to a certain point, depending on the person’s particular body and situation. This is happening. PD patients are recovering to the point of normalcy. Mind you, they are few and they are not spotlighted by anyone. It is against the law to be cured of disease. It makes more than one medical professional nervous when you start talking about recovery from Parkinson’s.
However, these few individuals are speaking up and speaking out to find others who may have the courage and desire to recover as well. It is happening! BUT………………..it is a long and arduous nightmare if not approached correctly. This process is understood by very few.
To undergo this transformation from PD to ‘normal’ one must make a complete lifestyle change. This change is to allow the ‘adrenaline’ brain to be turned off and the ‘dopamine’ brain to re-awaken. These changes for me include doing nothing but focusing on relaxing my body, clearing my mind of the past negative ‘things’, sleeping, meditating, connecting with God, laughing, doing whatever is necessary to develop the dopamine brain back into action. This process in the brain of awakening dormant dopamine activity can take 6 months or longer after clearing the brain of all drugs.
90% of my existence in the next 6 months will be in my home, chemical free, controlled temperature, a quiet, spiritual atmosphere, safe and nurturing. This is what I need as well as some Bowen Therapy and some specific nutrition. My family knows they will be functioning without me in a manner.
While I wait for native dopamine to build, I experience hard moments which require extreme faith in the future and knowledge that God is beside me.
For example, yesterday I had 2 hours of time where I could move freely without struggling. The rest of the 22 hours I sat or lay motionless or shuffled around at a snail’s pace. You should have seen me trying to tell my husband how to make a pie for Thanksgiving. Funny….
This is my only alternative to the horrors of dyskinesia caused by PD drugs. I’m at the point of no return. It’s only forward without the drugs.
My hands are shutting down now as my body uses the available dopamine for things like breathing and maintaining body temperature. Movement is on the back burner until further notice.
We spent Thanksgiving eating and watching old movies. Relaxed, loved, focused on ‘hope’. I feel my brain and body changing, no longer driven by adrenaline. It’s like James Brown’s song……..I feeeeeeel good………..sort of.
Here are some things that give me hope-
my newly remodeled living room and our kitty named Whisker’s
beautiful birds that visit my backyard, large and small
brilliant sunsets
I’ve been typing with one finger for some time now. Time for meditation and sleep even though I only got up 2 hours ago……
A Journey of One Day #2
A new day dawns rainy, cold. I watch out my window as two tiny yet stout birds find morning sustenance among my backyard plants. One is content to sit on the concrete and enjoy his meal unaware I am ten feet from him. His friends are in the tree above him and beckon him up. They are protected by the thick foliage of this tree and the camouflage it provides. One or two of them come down and grab a bite quickly then they are gone again. They are no bigger than a small egg. They seem to have limitless energy. Watching them has brought my hands to life.
I was awake early today. I said goodbye to my darling as he journeyed yet another time the long road to his job. I have the thought in my head to find all the candles we have and organize them and put them somewhere they will be easily accessible. I am prompted to go and buy some more today. That is done. I sit at my computer and read emails and listen and read uplifting words and one from an interesting lady named Keisha Crowther talking about how the world, earth, is changing and will be changed completely to it’s Heavenly state within 2 years and how we should prepare, change the way we live to reflect only the heart and love and not fear what is coming but glory in it.
It is quiet, peaceful, warm in my house. Ariana and her friend, Lexia are still asleep. Their school has a fall break this entire week. I look at my hammock, outside the slider door on the patio, bare of any covering now, waiting out the cold like me. I have such warm, wonderful memories of lying in my hammock feeling the sun on my body, comfortable and relaxed.
I am anticipating the next week to be hard for my body as I deny it the drugs it has had for 6 years now; just a little at a time will I do this so as to not cause severe shock.
I experience tightness in my diaphragm, nausea, sleepiness. It will probably get worse. I know that they are temporary symptoms of withdrawal. I have the power to overcome this and recover my central nervous system. I disengage from the emotions that have kept me living in my past. I move forward one step, one day at a time preparing for tomorrow by living today fully.
I am enjoying the bird life out in my backyard this morning. I’ve seen five different kinds of birds come to drink and eat from my yard even though it is raining. These are California winter birds. My cat, Whiskers, has joined me now and is excitedly looking for birds also. She paces to the other side of the room now then leaves because all the birds have gone for now.
I am thankful for this warm, cozy home, for my eyes to see the beauty of the earth, for my hands that create words here and do so many things, for my brain that has the power to heal itself.
Heavenly Father is with me always, his light and the light of Christ are in me; sustaining me moment to moment just as he sustains these birds. He knows me as I know Him.
I have no doubt that I will recover my health and in a few short years the earth will be renewed with the Savior’s presence and we will all be renewed with perfect bodies; what a thought!
The day is before me. I reverence it as another opportunity to learn and grow and share my love and be better than I was yesterday.
The day
This day now
Thoughts, actions
Compelling, sustaining
Intellect, consciousness
Beauty, harmony
Thanksgiving, patience
Solitude, humanity
Nature, love,
Forgiving, enduring
Exciting, adventure Family , neighbors, friends
Black and white kitty
Rain, green trees,
Red and yellow trees
Sky, air, breathe
Awareness, priorities
Prepare, Rest, Play
Enjoy, Remember.
The day.
This day.
Now.
Tracy/ Mom
November 23, 2010
I was awake early today. I said goodbye to my darling as he journeyed yet another time the long road to his job. I have the thought in my head to find all the candles we have and organize them and put them somewhere they will be easily accessible. I am prompted to go and buy some more today. That is done. I sit at my computer and read emails and listen and read uplifting words and one from an interesting lady named Keisha Crowther talking about how the world, earth, is changing and will be changed completely to it’s Heavenly state within 2 years and how we should prepare, change the way we live to reflect only the heart and love and not fear what is coming but glory in it.
It is quiet, peaceful, warm in my house. Ariana and her friend, Lexia are still asleep. Their school has a fall break this entire week. I look at my hammock, outside the slider door on the patio, bare of any covering now, waiting out the cold like me. I have such warm, wonderful memories of lying in my hammock feeling the sun on my body, comfortable and relaxed.
I am anticipating the next week to be hard for my body as I deny it the drugs it has had for 6 years now; just a little at a time will I do this so as to not cause severe shock.
I experience tightness in my diaphragm, nausea, sleepiness. It will probably get worse. I know that they are temporary symptoms of withdrawal. I have the power to overcome this and recover my central nervous system. I disengage from the emotions that have kept me living in my past. I move forward one step, one day at a time preparing for tomorrow by living today fully.
I am enjoying the bird life out in my backyard this morning. I’ve seen five different kinds of birds come to drink and eat from my yard even though it is raining. These are California winter birds. My cat, Whiskers, has joined me now and is excitedly looking for birds also. She paces to the other side of the room now then leaves because all the birds have gone for now.
I am thankful for this warm, cozy home, for my eyes to see the beauty of the earth, for my hands that create words here and do so many things, for my brain that has the power to heal itself.
Heavenly Father is with me always, his light and the light of Christ are in me; sustaining me moment to moment just as he sustains these birds. He knows me as I know Him.
I have no doubt that I will recover my health and in a few short years the earth will be renewed with the Savior’s presence and we will all be renewed with perfect bodies; what a thought!
The day is before me. I reverence it as another opportunity to learn and grow and share my love and be better than I was yesterday.
The day
This day now
Thoughts, actions
Compelling, sustaining
Intellect, consciousness
Beauty, harmony
Thanksgiving, patience
Solitude, humanity
Nature, love,
Forgiving, enduring
Exciting, adventure Family , neighbors, friends
Black and white kitty
Rain, green trees,
Red and yellow trees
Sky, air, breathe
Awareness, priorities
Prepare, Rest, Play
Enjoy, Remember.
The day.
This day.
Now.
Tracy/ Mom
November 23, 2010
A Journey of One Day #1
Each day in my journey to the life of 'No Drugs, No PD' is monumental. As I type with one hand at a snail's pace, I look forward to using both hands. As my body and my brain go thru this change I'm not 100% sure what to expect except that the outcome will be better than previous circumstances. This statement may be controversial to some but for me it's the only acceptable choice.
In the eternal setting, it all makes more sense, has a different value and clearer perspective. Heavenly Father knows. That's good enough for me.
A JOURNEY OF ONE DAY
A day in a life is a cycle of happening.
An hour in the day is a small child napping.
A minute in the hour is a waiting period.
A second within the minute is thought varied.
Or is it buried?
A day, a day, a day for what?
A day for me, it means so much.
An hour or two, a minute, a second
They’re full of meaning, never vacant.
A day is for living, thinking, learning.
A day is for pondering, loving, yearning.
A day is filled with great and profound moments,
They must not, must not pass by- unnoticed.
A cycle, an hour, a minute, a second
What just happened? Can you see it and reckon?
The thought, the feeling, the word, the gesture.
Is the makeup, the heart of our moments’ architecture.
Repetition, experience; ‘round the cycle we go
Does it e’er stop? We cannot know.
The cycle like the moment consists of memories.
Things most likely to be found in diaries.
An hour of power.
What do we do with an hour?
Just part of a schedule?
Or time in the shower?
An hour like a clock, never stops counting on
On to the next hour, on to the dawn.
Waking, working, wanting, willing
Praying, earning, stopping, filling.
Wake me in an hour
Or else I’ll be sour.
I’ll be back in an hour.
With a bouqet of spring flowers.
Mind the minutes of your existence.
Define them, remember them. Be persistent.
Wait a minute. Do you have a minute?
What is it about……………….?
It’s about the here and now, the infinitesimal minute.
Seconds in a day are like sands of the sea.
Coming and going, filling our needs.
A second passed is gone forever.
While it’s here, it must be savored.
The journey of time in one day is mystical.
For man it could be simple, even whimsical.
For God it is purely logical and spiritual.
Together they make the journey of one day eternal!
A day in a life is a cycle of happening.
An hour in the day is a small child napping.
A minute in the hour is a waiting period.
A second within the minute is thought varied.
Or is it buried?
A day, a day, a day for what?
A day for me, it means so much.
An hour or two, a minute, a second
They’re full of meaning, never vacant.
A day is for living, thinking, learning.
A day is for pondering, loving, yearning.
A day is filled with great and profound moments,
They must not, must not pass by- unnoticed.
A cycle, an hour, a minute, a second
What just happened? Can you see it and reckon?
The thought, the feeling, the word, the gesture.
Is the makeup, the heart of our moments’ architecture.
Repetition, experience; ‘round the cycle we go
Does it e’er stop? We cannot know.
The cycle like the moment consists of memories.
Things most likely to be found in diaries.
An hour of power.
What do we do with an hour?
Just part of a schedule?
Or time in the shower?
An hour like a clock, never stops counting on
On to the next hour, on to the dawn.
Waking, working, wanting, willing
Praying, earning, stopping, filling.
Wake me in an hour
Or else I’ll be sour.
I’ll be back in an hour.
With a bouqet of spring flowers.
Mind the minutes of your existence.
Define them, remember them. Be persistent.
Wait a minute. Do you have a minute?
What is it about……………….?
It’s about the here and now, the infinitesimal minute.
Seconds in a day are like sands of the sea.
Coming and going, filling our needs.
A second passed is gone forever.
While it’s here, it must be savored.
The journey of time in one day is mystical.
For man it could be simple, even whimsical.
For God it is purely logical and spiritual.
Together they make the journey of one day eternal!
In the eternal setting, it all makes more sense, has a different value and clearer perspective. Heavenly Father knows. That's good enough for me.
Friday, March 5, 2010
Life With Parkinson's in my 40's- #28 Mission Accomplished- Slowly
This is my attempt at a 'do-it-yourself-low-budget' kitchen makeover. Combine the low budget part and slow, unpredictably functioning hands and you have a sort of dryly humorous adventure.
For the most part, I love to paint- anything. So I do. It's great to be the Mom! My sweet husband follows my schedule more patiently than any other human being. I couldn't have done it without his help, patience and love. This is sounding sappy all ready. You have to understand, our kitchen has been a sadly, dark room for too many years and it has been such a lift to my spirits and even to the spirit of our house to give the room a new, brighter look. It was beyond my 'painting' skills to do all that needed to be done. Aren't I lucky to have a husband that not only dances and creates lasers but is very talented with a piece of wood and a saw and a sander. He sanded and modified the cabinet doors and I painted everything. He re-hung the doors. I knew it would be a huge undertaking for me, the 'Parkie'. So we have worked in stages, slow stages I might add. We began in November of last year. This is what the kitchen looked like before we started.
My sweetie with his sanding gear on. Doesn't he look like something from outer space or some cave exploration? You wouldn't believe the amount of sawdust that this created. We tried our best to tarp off the rest of the house and he had the vaccum on with the suction working the entire time he sanded. The doors he took outside to the patio and his table saw and we had sawdust outside also......For the last two months I've had sawdust footprints throughout the house.
The entire contents of the cabinets and drawers we were working on had to be relocated to another room. Now that was fun. When we needed a plate or spoon, we went to the bedroom to get it. Or a pan, etc. It made for some interesting meals.
We made breakfast (toaster waffles) in the bathroom one morning when Ariana had a friend sleepover....
This is where all of our pots and pans lived for about a week. And the buckets were my painting pedestals for the cabinet doors. The buckets, by the way, are full of wheat (one of our emergency food storage items).
I worked on the painting as often as my hands and brain would allow. Four and a half months later, we are 3/4 finished. We still have to do the bottom half of one side of the kitchen. It will have to wait until after my back surgery. Here is a picture of the finished side. I am so happy about how it turned out that I couldn't wait to blog about it.
Not bad for Parkie with a bad back. I owe my success, as I said, to my husband and my daughter, Ariana, for being patient and helping me and taking orders so sweetly. Thanks Darling, Thanks Ariana.
There is a little more light in my life.....it is helping to heal the dark places.....in my house and in my soul.
Sunday, October 18, 2009
Life With Parkinson's in my 40's- #27 Feeling Sorry For Ourselves Are We?
I decided to write away my anguish and self-pity today. It's anguish that creeps up when I let my guard down or rather when I forget how blessed I am. It's self-pity that turns me into a whining, crying less than dignified me. The disease, Parkinson's (I almost typed 'my disease', it is not my disease) is trying once again to spread and gain strength. I feel confident, almost, that this is another misunderstood set of symptoms and that my usual 'diseased state' will re-emerge. It is a disease that is so misunderstood and not understood that the uncertain and shifting faces of PD will most likely never be revealed or explained. It is my opinion that a disease that slowly steals your body away from your living soul is as unique to each soul who is 'lucky' enough to experience it as each physical body is unique. God created our bodies to house our souls so we could gain experience and knowledge and wisdom. Each body is as unique as each soul is unique. Thus we handle disease differently. We handle life differently. See where I'm going with this?
This past week I have had to forgo many activities because of PD. It's not that I want to hide away. My hands don't move when my brain tells them to. I cannot smile. I cannot stand up straight. I cannot sleep. When I do sleep it is full of awful dreams that leave me more exhausted than when I went to bed. These outward physical appearances are hard for most people to watch or recognize or understand. It is tiring explaining it to one more person and watching their reaction or trying to soften the blow when they realize what I'm talking about. God has blessed me with a few friends and family members, however, who do understand and know how to get through the awkward situations with everyone's self-esteem and happy moment still intact.
I really miss the spontaneity of life. Once in a while I have a spontaneous experience and I savor it. Writing is like that for me. Right now, my fingers are working so I'm writing (typing that is). For now, that has to serve as my spontaneous moment.
To all my dance friends, I want you to know that I relish every moment of dancing with you and sharing that part of us that we all love- dancing. It is what has kept me going for some 6 years now since I was diagnosed. Unless there are chemicals somewhere, dancing nearly erases all my PD symptoms. The music, my perfect dance partner, and good friends who understand my desire to dance all feed my brain with PD fighting food. Thank you for that. You'll never know really how much you impact my existence for good.
To those of you who have answered my call to dance 'Something in Red' and 'Takin a Chance on Love'...thank you, thank you for giving me the experiences I have dreamed about. I may never have another chance to experience something like that again. Never take for granted the moments here and now when you can do whatever you want to do. I will treasure the memories and the videos of these days and months we spent learning to dance as a group. I can only hope I will be granted more time for more dancing.....
So, I'm feeling a little better, a little less whiny, a little less picked on. Let me tell you what I have to be thankful for-
You all know what a wonderful husband I have.
I have 3 beautiful daughters and 1 beautiful stepdaughter. My two oldest girls are married to 2 perfect sons-in-law. I have 1 perfect grandaughter. And I have 1 sweet, wonderful son and 1 exceptional stepson.
I have a lovely home and friends like you. I live in this amazing land of America where I can exercise my freedoms and God given agency. I can walk, talk and dance. I can see, hear and taste. I have great parents and siblings, even though some of them don't know it.
I am blessed. I feel even better. PD is fading into the background again. It's all good. Thanks for listening.
Life goes on. Tomorrow will be better.
A message to end with-
Saint Theresa's prayer;
May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.
I was blessed to capture this sunset over a foggy San Francisco bay with my camera. My friend Patricia tells me 'I am out of this world' to have captured this picture! This picture has come to be my beacon of hope in a new day. I have faith the sun will rise again for everything and for everybody....in time, in time. I will savor today and hope for more time....
This past week I have had to forgo many activities because of PD. It's not that I want to hide away. My hands don't move when my brain tells them to. I cannot smile. I cannot stand up straight. I cannot sleep. When I do sleep it is full of awful dreams that leave me more exhausted than when I went to bed. These outward physical appearances are hard for most people to watch or recognize or understand. It is tiring explaining it to one more person and watching their reaction or trying to soften the blow when they realize what I'm talking about. God has blessed me with a few friends and family members, however, who do understand and know how to get through the awkward situations with everyone's self-esteem and happy moment still intact.
I really miss the spontaneity of life. Once in a while I have a spontaneous experience and I savor it. Writing is like that for me. Right now, my fingers are working so I'm writing (typing that is). For now, that has to serve as my spontaneous moment.
To all my dance friends, I want you to know that I relish every moment of dancing with you and sharing that part of us that we all love- dancing. It is what has kept me going for some 6 years now since I was diagnosed. Unless there are chemicals somewhere, dancing nearly erases all my PD symptoms. The music, my perfect dance partner, and good friends who understand my desire to dance all feed my brain with PD fighting food. Thank you for that. You'll never know really how much you impact my existence for good.
To those of you who have answered my call to dance 'Something in Red' and 'Takin a Chance on Love'...thank you, thank you for giving me the experiences I have dreamed about. I may never have another chance to experience something like that again. Never take for granted the moments here and now when you can do whatever you want to do. I will treasure the memories and the videos of these days and months we spent learning to dance as a group. I can only hope I will be granted more time for more dancing.....
So, I'm feeling a little better, a little less whiny, a little less picked on. Let me tell you what I have to be thankful for-
You all know what a wonderful husband I have.
I have 3 beautiful daughters and 1 beautiful stepdaughter. My two oldest girls are married to 2 perfect sons-in-law. I have 1 perfect grandaughter. And I have 1 sweet, wonderful son and 1 exceptional stepson.
I am blessed. I feel even better. PD is fading into the background again. It's all good. Thanks for listening.
Life goes on. Tomorrow will be better.
A message to end with-
Saint Theresa's prayer;
May today there be peace within. May you trust God that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith. May you use those gifts that you have received, and pass on the love that has been given to you. May you be content knowing you are a child of God. Let this presence settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.
Sunday, September 20, 2009
Life With Parkinson's in my 40's- #26 Parkinson's Patients Dance
Please take a few minutes and read the following article written by my new found friend, Bob Dawson, on his site "Parkinson's Patients; yes we can dance" I've inserted the link below. This article makes me very happy. The picture is me, of course, a Parkinson's patient. My dance partner, my husband is not a Parkinson's patient. Can you tell any difference? Read what Mr. Dawson has discovered and shared with us. You'll be amazed.........It's entitled-
Olie Westheimer says, 'They need to dance'
To read the article click on the title of this post and it will take you to the article.
Tuesday, September 8, 2009
Life With Parkinson's in my 40's- #23 Beach Bums and Dancers
This month as we tried to decide on what we could afford as far as recreational activities and date nights, we had fun without spending a whole lot of money. The first choice for me is always dancing and/or the beach. We invited three dear ladies who we know from church to accompany us to our monthly ballroom dance with a live 'swing era' band. They are all widows and have really affected our lives with their kindness, wisdom, and pure love of Christ that they exhibit. They were thrilled and thoroughly enjoyed the music from their 'younger days'. One of them danced with Mr. Tracy. *********Our dear friends- Wanda, Joanne and Dee-
I wore a dress that I had made previously and only worn once. This picture is of us on this night. I love red. People notice it and I just feel like I dance better in a dress like this. I'm sure I don't dance better but it feels like it. I've had a touchy week with PD. I always go on faith that I'm going to move well enough to dance without making a fool of myself. Most of the dance attendees do not know that I have PD and that's the way I like it. I took it very easy the entire two days before the dance night, got enough sleep, tried (just tried) to eat well. And on the day of the dance I time my medications just right as to give me peak utilization of it in the later evening. The atmosphere is fun, we have so many good friends there, the music is so uplifting, and dancing with my prince charming is so fulfilling.
********Our dance friends and wonderful people- Sal and Mary
*********John and Karen, Joe and Mary-
I never get enough dancing. I never last the full 3 hours anymore, but close. I wore a new pair of ballroom shoes and ended up with a few blisters but it's always worth it. Dance night was Saturday. Then on Monday morning, Labor Day, we took off at 8:00 am for Monterey. It's always a longer drive than I remember. But it's always worth it. We missed the low tide but still managed to climb out a ways and get some spectacular pictures. For all of my pics from this day you can go to flickr.com.
*********Me and my prince charming!
**********The girls!
*********More of me and the prince; a change of costume for me-
Getting ready to leave; walking on the beach is so peaceful even with noisy birds and tons of kids playin.
Now this is one of my luckier shots. Notice the sailboat, then the dolphin, and the birds feeding on fish; it's so cool!
There was spectacular surf. And there was also some daring surfers. I'll post those videos later.
These sea pelicans were performing thrilling aerial stunts. I could have watched them for days.
Our world is so beautiful. Our families are so beautiful. Life is good even when bad things happen. It's what you make of the 'things' that counts.
I was so thrilled to get lucky and catch these beautiful dolphins;the most beautiful, intelligent animals swimming the oceans.
Wishing you pleasant days, many wonderful memories and much love-
Monday, August 31, 2009
Life With Parkinson's in my 40's- #24 PD- Doctors don't understand it
In the past year, I have learned much about the diverse nature of the medical community. Included in this group are doctors of general practice, specialists, nurses of every rank including the kind who take you to your little cubicle to wait for the doctor and take your blood pressure and temperature for the umpteenth time. Actually they aren't nurses but medical assistants. Then there is the nurse who is on duty should you need a non emergency injection of some kind. And last but not least the hospital nurses which I categorize into two groups; ER and floor nurses. However, the triage nurse plays a vital role in some instances. Unfortunately I have become familiar with this world because of my very frequent visits; two to three times a week for an entire year; maybe a bit longer. I've had very positive experiences with doctors and nurses and I've had nightmare horror story experiences.
I'm not one to bash anyone who is trying to get through life like I am. I don't believe in law suits. But I do believe that we each need to be accountable for our actions in this life and how they affect the people we come in contact with and/or are responsible for at any given moment.
Living with Parkinsons at a young age has been a challenge in and of itself. When you add to PD, a severe back injury (ruptured disc), a constant, hemorrhaging uterus, and chronic migraine headaches it does not make for an easy time. I was seeing my primary physician, a neurologist, a back pain intervention doctor, an ob/gyn, many, many ER doctors and Physician Assistants, eventually a neuro-surgeon and a chronic pain management doctor.
I love my primary physician. He's a sensible, intelligent human being who has always treated me with dignity and respect and never tried to diminish my pain. The intervention doctor called me at home, got me an emergency appt to see a neurosurgeon whose office is 1 1/2 hours away. He in turn was compassionate and scheduled my surgery for 5 days from the day I first saw him. My ob/gyn tried every method known to help my diseased uterus and had complete trust that I was doing what she asked and after some time had passed with little improvement, we decided the best and last choice available was a hysterectomy. The chronic pain doctor helped me to understand how the brain and body perceive pain and how it needs to be helped when the acute situation is gone but the brain doesn't realize it. He prescribed pain medicine in such a way that left me with dignity and still controlled my pain.
These doctors worked together, often consulting one another about my very complicated situation. Some of them didn't always listen unless I got in their face, so to speak. I'm not afraid to state what I need and what they are not giving me. Eventually, I got what I needed and I am finally stabilizing although I still have daily pain from a 'nerve scarring' in the sciatic nerve on my right side.
How has Parkinson's affected these circumstances I have just relayed? WEll, unless I haven't had my meds, have a bad virus, infection or am seriously emotionally stressed, most people cannot tell I have Parkinson's. And when I tell them (I'm talking about the medical community now) they have a hard time believing me. But it's in that computer and the files don't lie so they finally accept it with witheld skepticism. No matter what I tell them they cannot understand what it is like to have Parkinson's and deal with other health issues as well. Even a neurologist has no idea how a PD patient really feels or what they go through every day.
Time and again as I found myself in yet another ER bed, another hospital bed, another doctor's office, or pharmacy, I would have to rehearse the same information again and again to make them understand that I am different because I have PD, I cannot just take any medication, just any vitamin, just any antibiotic. Oh, yea, and I'm allergic to latex! Now that's a fun one.
I learned the ins and outs of narcotics, the doses, the names, the accompanying drugs I would need to counteract the side effects of the narcotics. I was in so much pain at one point that without the pain medicine, I would have gone insane; literally. I am thankful for it. But, I had very little formal training from any doctor or nurse about the dangers of long term use and the high doses that I was on for some months. It all affected my Pd and my PD affected the meds, etc., etc.
About a year ago, I found myself in Pennsylvania at a clinic for PD treatment. It was a research clinic working with IV treatments of phosphatidyl choline and sodium butyrate and glutathione. I was there for two weeks, alone. While I was there I got two major migraines; this would happen at the change of the barometric pressure. The second visit I made to the local hospital there for pain relief from the horrors of these headaches; unlike any pain I've ever felt, I came across an arrogant, young doctor who happened to be on duty in the ER. My aunt lived in the area and had taken me there so she was with me but didn't know anything about what I needed. I told him the usual protocol that worked for my headaches (it had been six months of headaches and pain shots without a proper headache diagnosis or treatment plan). He didn't want to hear it. He had a 'pet' drug that he insisted would work better. He was anxious to see it work. So I took his word and consented to a treatment that I had never studied or researched (as is my way). It was a drug called compazine. It is for schitsophrenia and/or headaches according to him.
How you have to know more details about this fateful day. I was due to catch a plane back to California (3,000 miles west) at 6:30 am. It was 2:30 am when I received the drug. It was administer as a bolus which means the undiluted medicine was injected into an IV right at the site without any fluids. They left me alone with my sleeping aunt to let the drug work. I proceeded to have the most monstrous experience in my life and I've had a lot of horrible physical experiences. I had dozens and dozens of people in my head talking, I felt the sensation of my skin boiling and bubbling and I smelled like the dead, like formaldehyde. It deadened my neck muscles and my tongue. And the most torturous side effect was it heightened my PD symptoms beyond what I had ever experienced. But....my headache was gone.
They unplugged me, had me sign the papers you sign, and shewed me out the door. My aunt and I went back to my hotel and fell asleep. Neither of us heard the alarm go off that would have allowed us time to get to the airport on time. I woke up for some reason, woke up my aunt and we hurriedly (in slow motion) got everything in her car and on the way to the airport. As I checked out at the desk, I could only mutter one syllable sounds, I could not legibly write my name or even smile. I was literally a zombie. We got to the airport with only minutes to spare. My luggage was overweight and the rude luggage check clerk ordered me to rectify it or my luggage wasn't going anywhere. I could barely move, let alone rearrange my luggage contents with a line of people watching. Somehow I managed it with my aunt's help. Then there was the security checkpoint. It was a chilly 30 degrees so I was layered with a coat, scarf, gloves, the works. Well, you all know what you have to do at the security checkpoints. It all had to come off. I could not move my hands. AN angel was with me then because as I waited for nearly ten precious minutes to get through, I again managed to get all outer layers, including boots off and in trays. Nearly in tears, yet unable to cry I started making my way to the ever distant gate. I was dragging my left leg, my neck unable to steady my head, my tongue still numb. And my vision was so blurry that I could not read the signs I passed- big signs. I finally accidentally saw my gate. They were boarding. I was in the last group and got to the line just as my turn came to board. I found my assigned seat which was, praise the Lord, by a window. I don't know how I got my carry on up in the bin but I did, I sat down, leaned over on the window and I was out for a good hour. I slobbered in my sleep.
When I woke up, my feet were numb with cold, I still couldn't hold my head up or see anything clearly. There was a jolly couple sitting next to me who were on their first trip to Hawaii and wanted to tell me all about it. I politely slurred to them that I was sick, although not contagious, and that I would not be talking too much. Then I went back to sleep.
Three torturous hours later, the plane landed in Texas (my layover) at the biggest airport I'd ever seen. I was humiliated at my appearance and stumbled off the plane into what was a small city within an airline terminal. Wall to wall people, a tram that circled the perimeter of the entire airport's some 150 gates. I had 4 hours to wait for my connecting flight. I wanted to cry but still couldn't. I was so hungry so I looked for an empty seat in the restaurant that happened to be in front of me. It was the breakfast hour and the place was packed. I eventually was seated by myself just inside a half wall seperating the terminal walkway from my table. People whizzed by running for a plane or to fetch their luggage. Around me people were talking and eating. I was the only one alone. I was so alone. "I'll call my husband", I thought. "I'll feel better just to talk to someone from home." As I waited for my veggie omelette to arrive I dialed my husbands work phone. He didn't answer; got his voice mail. I started to leave a message and before an entire sentence was completely out of my mouth, I finally began to cry. I immediately attracted the attention of the couple across the 2" aisle. I turned my body toward the half wall and walkway and finished my sobbing sentence. It was then that I realized it was Sunday. My husband was not at work, he was at church with our daughter. So much for talking to someone at home. My omelette came and I devoured it. After I ate I felt a little better but still mostly like a zombie. What would I do for another 3 1/2 hours. Got out my mp3 player and it promptly went dead. I strolled or should I say shuffled around squinting to see where I was going. Lo and behold, I came upon a blessed sight. There before me was about 10 cots all together in a little area by a wall for people to sleep on; beautiful. I had a little blanket in my case. I lay down, covered up and was out for about 45 minutes. I pulled the blanket over my head as I dozed and cried myself to sleep. When I woke up I checked the time and headed for the departure board to check my flight. The gate had been changed so I had to figure out how to get back on the tram and travel to the other side of the 'city' standing up. At every gate, the automated tram stopped and a computer generated woman's voice announced the fact that we had arrived at yet another gate and be sure to keep clear of the door and hold on to something as we took off. I must have heard this message 20 times before I got to my stop. Finally, I was boarding my final plane home. I got a window seat again. I still couldn't hold my head up very well or talk but I felt somewhat stronger. I was only 3 hours from home. I enjoyed the scenery of the southwest landscapes; the grand canyon area, Arizona deserts and finally the Sierra's. The plane flew over the complex where my husband works in Livermore, flew over all the thousands of windmills near there. It seemed an eternity before the plane landed and I actually got out of the plane. Waiting for me was my husband and daughter. I was never so thankful to see them as at this moment. I cried for ten minutes. On the way home, I explained to my husband about my experience and what the drug had done to me.
The next day, still unable to talk very well or see clearly or swallow, I called the hospital in Pennsylvania and got the chief of medicine on the phone and told him how negligent the ER doctor had been administering compazine to someone with PD. He was horrified and I think, fully expected me to sue them. I went online and researched compazine and found that Benadryl would counteract some of the effects. It also said that a Dr. should never administer this drug, compazine, as a bolus but with fluids on a slow drip. I got a bolus. They hooked up a bag of fluids then never opened it up. It hung there for two hours without my body getting a single drop. But I got the compazine. Whammo! Bammo! I can still feel my skin boiling....ooooh. It took nearly two weeks for me to completely find my speech and swallowing abilities again. But it has never been the same since and it has been a year and a half.
I told the doctor in PA that I didn't believe in law suits but he better be darn sure that ER doc never uses compazine on anyone with PD again. Now the thing is that he knew full well that I had PD when he gave it to me. IT was right in front of him. He knew. One of the biggest warning side effects of the drug is that it causes PD symptoms. Now that is not too hard to understand.
Doctors do not know everything. Doctors do not know a lot of things. They are not always right or sensible. They make mistakes, they are tired from working too much, or they are just plain arrogant and stupid.
On the other hand, as I stated above, I have come across many doctors that have been my saving grace and I am thankful, oh so thankful. But all it takes is one bozo to ruin your life, your brain, your body, your future. Luckily, I am still kicking, swallowing, talking, and even dancing but not because of the Compazine man, because of my own stubborness and will to be normal again.......somehow.
It's a hard thing to ponder....doctors. Can't live with them, can't live without them. So what I have decided is that I never take a doctors word for anything until he or she has proven to me what the treatment, drug, or procedure will do to me and for me. I asked a hundred questions, literally. I do it in as friendly a way as possible. I am just as intelligent as a doctor, I just don't have a list of prescription drugs memorized. I don't have the experience they have of seeing different patients with different illnesses, injuries, etc. but I do have the experience of living with my body, my illness, my life, my family. I know what I need. It's been an education of sorts. I'll never look at a hospital or a doctor again without scrutinizing everything I see. It's ok. We live in a free country, in the 21st century. Women can vote now. WE have the intelligence and the technology to research and communicate with anyone over the internet or a cell phone. We don't have to guess or take someones word for anything when it comes to our health, our brains in my case or our precious bodies.
As I said, I have an excellent team of doctors whom I am seeing less and less of, thank goodness. Still, however, there are more stories to be told, even of these well meaning doctors. THe hysterectomy experience.......another day perhaps. Right now, I am content to listen to daily hypnosis and affirmations to keep my anxiety levels down which in turn keeps my pain levels down which makes for a better day. I am an expert on just how much physical exertion my back and legs can take before bad things start to develop. So I maintain my minimal level of exercise, I take a minimal yet effective dose of pain meds and my PD meds and I do pretty well.
It is a cycle that can never be forgotten. A small break in my chain of self treatment items and I am back to square one; pain, worry, more pain, sometimes depression. But I am learning how to catch things before they escalate and it is quite amazing how much power I have to control my pain, therefore, my life.
Still,....I send out my warning to people like me. Doctors do not know everything. Listen, think it through, research, second opinions, more pondering. You have control of your medical decisions, not the doctor; though they mostly mean well. Unfortunately, well meaning is not synonymous with what's right for you all the time.
I feel fortunate to be alive. I really do. Kind of amazing the things I've survived at the hands of 'professionals'. So I am sharing my thoughts since I am still around to do it.
Thanks Doctors and I also have to say no thanks to some of you. The next time you see a patient who says they have PD, be still and listen. Then go do your homework before administering drugs. Please. Because doctors do not understand Parkinson's, only the PD patient understands it, maybe. AT least I do, I think.....
I'm not one to bash anyone who is trying to get through life like I am. I don't believe in law suits. But I do believe that we each need to be accountable for our actions in this life and how they affect the people we come in contact with and/or are responsible for at any given moment.
Living with Parkinsons at a young age has been a challenge in and of itself. When you add to PD, a severe back injury (ruptured disc), a constant, hemorrhaging uterus, and chronic migraine headaches it does not make for an easy time. I was seeing my primary physician, a neurologist, a back pain intervention doctor, an ob/gyn, many, many ER doctors and Physician Assistants, eventually a neuro-surgeon and a chronic pain management doctor.
I love my primary physician. He's a sensible, intelligent human being who has always treated me with dignity and respect and never tried to diminish my pain. The intervention doctor called me at home, got me an emergency appt to see a neurosurgeon whose office is 1 1/2 hours away. He in turn was compassionate and scheduled my surgery for 5 days from the day I first saw him. My ob/gyn tried every method known to help my diseased uterus and had complete trust that I was doing what she asked and after some time had passed with little improvement, we decided the best and last choice available was a hysterectomy. The chronic pain doctor helped me to understand how the brain and body perceive pain and how it needs to be helped when the acute situation is gone but the brain doesn't realize it. He prescribed pain medicine in such a way that left me with dignity and still controlled my pain.
These doctors worked together, often consulting one another about my very complicated situation. Some of them didn't always listen unless I got in their face, so to speak. I'm not afraid to state what I need and what they are not giving me. Eventually, I got what I needed and I am finally stabilizing although I still have daily pain from a 'nerve scarring' in the sciatic nerve on my right side.
How has Parkinson's affected these circumstances I have just relayed? WEll, unless I haven't had my meds, have a bad virus, infection or am seriously emotionally stressed, most people cannot tell I have Parkinson's. And when I tell them (I'm talking about the medical community now) they have a hard time believing me. But it's in that computer and the files don't lie so they finally accept it with witheld skepticism. No matter what I tell them they cannot understand what it is like to have Parkinson's and deal with other health issues as well. Even a neurologist has no idea how a PD patient really feels or what they go through every day.
Time and again as I found myself in yet another ER bed, another hospital bed, another doctor's office, or pharmacy, I would have to rehearse the same information again and again to make them understand that I am different because I have PD, I cannot just take any medication, just any vitamin, just any antibiotic. Oh, yea, and I'm allergic to latex! Now that's a fun one.
I learned the ins and outs of narcotics, the doses, the names, the accompanying drugs I would need to counteract the side effects of the narcotics. I was in so much pain at one point that without the pain medicine, I would have gone insane; literally. I am thankful for it. But, I had very little formal training from any doctor or nurse about the dangers of long term use and the high doses that I was on for some months. It all affected my Pd and my PD affected the meds, etc., etc.
About a year ago, I found myself in Pennsylvania at a clinic for PD treatment. It was a research clinic working with IV treatments of phosphatidyl choline and sodium butyrate and glutathione. I was there for two weeks, alone. While I was there I got two major migraines; this would happen at the change of the barometric pressure. The second visit I made to the local hospital there for pain relief from the horrors of these headaches; unlike any pain I've ever felt, I came across an arrogant, young doctor who happened to be on duty in the ER. My aunt lived in the area and had taken me there so she was with me but didn't know anything about what I needed. I told him the usual protocol that worked for my headaches (it had been six months of headaches and pain shots without a proper headache diagnosis or treatment plan). He didn't want to hear it. He had a 'pet' drug that he insisted would work better. He was anxious to see it work. So I took his word and consented to a treatment that I had never studied or researched (as is my way). It was a drug called compazine. It is for schitsophrenia and/or headaches according to him.
How you have to know more details about this fateful day. I was due to catch a plane back to California (3,000 miles west) at 6:30 am. It was 2:30 am when I received the drug. It was administer as a bolus which means the undiluted medicine was injected into an IV right at the site without any fluids. They left me alone with my sleeping aunt to let the drug work. I proceeded to have the most monstrous experience in my life and I've had a lot of horrible physical experiences. I had dozens and dozens of people in my head talking, I felt the sensation of my skin boiling and bubbling and I smelled like the dead, like formaldehyde. It deadened my neck muscles and my tongue. And the most torturous side effect was it heightened my PD symptoms beyond what I had ever experienced. But....my headache was gone.
They unplugged me, had me sign the papers you sign, and shewed me out the door. My aunt and I went back to my hotel and fell asleep. Neither of us heard the alarm go off that would have allowed us time to get to the airport on time. I woke up for some reason, woke up my aunt and we hurriedly (in slow motion) got everything in her car and on the way to the airport. As I checked out at the desk, I could only mutter one syllable sounds, I could not legibly write my name or even smile. I was literally a zombie. We got to the airport with only minutes to spare. My luggage was overweight and the rude luggage check clerk ordered me to rectify it or my luggage wasn't going anywhere. I could barely move, let alone rearrange my luggage contents with a line of people watching. Somehow I managed it with my aunt's help. Then there was the security checkpoint. It was a chilly 30 degrees so I was layered with a coat, scarf, gloves, the works. Well, you all know what you have to do at the security checkpoints. It all had to come off. I could not move my hands. AN angel was with me then because as I waited for nearly ten precious minutes to get through, I again managed to get all outer layers, including boots off and in trays. Nearly in tears, yet unable to cry I started making my way to the ever distant gate. I was dragging my left leg, my neck unable to steady my head, my tongue still numb. And my vision was so blurry that I could not read the signs I passed- big signs. I finally accidentally saw my gate. They were boarding. I was in the last group and got to the line just as my turn came to board. I found my assigned seat which was, praise the Lord, by a window. I don't know how I got my carry on up in the bin but I did, I sat down, leaned over on the window and I was out for a good hour. I slobbered in my sleep.
When I woke up, my feet were numb with cold, I still couldn't hold my head up or see anything clearly. There was a jolly couple sitting next to me who were on their first trip to Hawaii and wanted to tell me all about it. I politely slurred to them that I was sick, although not contagious, and that I would not be talking too much. Then I went back to sleep.
Three torturous hours later, the plane landed in Texas (my layover) at the biggest airport I'd ever seen. I was humiliated at my appearance and stumbled off the plane into what was a small city within an airline terminal. Wall to wall people, a tram that circled the perimeter of the entire airport's some 150 gates. I had 4 hours to wait for my connecting flight. I wanted to cry but still couldn't. I was so hungry so I looked for an empty seat in the restaurant that happened to be in front of me. It was the breakfast hour and the place was packed. I eventually was seated by myself just inside a half wall seperating the terminal walkway from my table. People whizzed by running for a plane or to fetch their luggage. Around me people were talking and eating. I was the only one alone. I was so alone. "I'll call my husband", I thought. "I'll feel better just to talk to someone from home." As I waited for my veggie omelette to arrive I dialed my husbands work phone. He didn't answer; got his voice mail. I started to leave a message and before an entire sentence was completely out of my mouth, I finally began to cry. I immediately attracted the attention of the couple across the 2" aisle. I turned my body toward the half wall and walkway and finished my sobbing sentence. It was then that I realized it was Sunday. My husband was not at work, he was at church with our daughter. So much for talking to someone at home. My omelette came and I devoured it. After I ate I felt a little better but still mostly like a zombie. What would I do for another 3 1/2 hours. Got out my mp3 player and it promptly went dead. I strolled or should I say shuffled around squinting to see where I was going. Lo and behold, I came upon a blessed sight. There before me was about 10 cots all together in a little area by a wall for people to sleep on; beautiful. I had a little blanket in my case. I lay down, covered up and was out for about 45 minutes. I pulled the blanket over my head as I dozed and cried myself to sleep. When I woke up I checked the time and headed for the departure board to check my flight. The gate had been changed so I had to figure out how to get back on the tram and travel to the other side of the 'city' standing up. At every gate, the automated tram stopped and a computer generated woman's voice announced the fact that we had arrived at yet another gate and be sure to keep clear of the door and hold on to something as we took off. I must have heard this message 20 times before I got to my stop. Finally, I was boarding my final plane home. I got a window seat again. I still couldn't hold my head up very well or talk but I felt somewhat stronger. I was only 3 hours from home. I enjoyed the scenery of the southwest landscapes; the grand canyon area, Arizona deserts and finally the Sierra's. The plane flew over the complex where my husband works in Livermore, flew over all the thousands of windmills near there. It seemed an eternity before the plane landed and I actually got out of the plane. Waiting for me was my husband and daughter. I was never so thankful to see them as at this moment. I cried for ten minutes. On the way home, I explained to my husband about my experience and what the drug had done to me.
The next day, still unable to talk very well or see clearly or swallow, I called the hospital in Pennsylvania and got the chief of medicine on the phone and told him how negligent the ER doctor had been administering compazine to someone with PD. He was horrified and I think, fully expected me to sue them. I went online and researched compazine and found that Benadryl would counteract some of the effects. It also said that a Dr. should never administer this drug, compazine, as a bolus but with fluids on a slow drip. I got a bolus. They hooked up a bag of fluids then never opened it up. It hung there for two hours without my body getting a single drop. But I got the compazine. Whammo! Bammo! I can still feel my skin boiling....ooooh. It took nearly two weeks for me to completely find my speech and swallowing abilities again. But it has never been the same since and it has been a year and a half.
I told the doctor in PA that I didn't believe in law suits but he better be darn sure that ER doc never uses compazine on anyone with PD again. Now the thing is that he knew full well that I had PD when he gave it to me. IT was right in front of him. He knew. One of the biggest warning side effects of the drug is that it causes PD symptoms. Now that is not too hard to understand.
Doctors do not know everything. Doctors do not know a lot of things. They are not always right or sensible. They make mistakes, they are tired from working too much, or they are just plain arrogant and stupid.
On the other hand, as I stated above, I have come across many doctors that have been my saving grace and I am thankful, oh so thankful. But all it takes is one bozo to ruin your life, your brain, your body, your future. Luckily, I am still kicking, swallowing, talking, and even dancing but not because of the Compazine man, because of my own stubborness and will to be normal again.......somehow.
It's a hard thing to ponder....doctors. Can't live with them, can't live without them. So what I have decided is that I never take a doctors word for anything until he or she has proven to me what the treatment, drug, or procedure will do to me and for me. I asked a hundred questions, literally. I do it in as friendly a way as possible. I am just as intelligent as a doctor, I just don't have a list of prescription drugs memorized. I don't have the experience they have of seeing different patients with different illnesses, injuries, etc. but I do have the experience of living with my body, my illness, my life, my family. I know what I need. It's been an education of sorts. I'll never look at a hospital or a doctor again without scrutinizing everything I see. It's ok. We live in a free country, in the 21st century. Women can vote now. WE have the intelligence and the technology to research and communicate with anyone over the internet or a cell phone. We don't have to guess or take someones word for anything when it comes to our health, our brains in my case or our precious bodies.
As I said, I have an excellent team of doctors whom I am seeing less and less of, thank goodness. Still, however, there are more stories to be told, even of these well meaning doctors. THe hysterectomy experience.......another day perhaps. Right now, I am content to listen to daily hypnosis and affirmations to keep my anxiety levels down which in turn keeps my pain levels down which makes for a better day. I am an expert on just how much physical exertion my back and legs can take before bad things start to develop. So I maintain my minimal level of exercise, I take a minimal yet effective dose of pain meds and my PD meds and I do pretty well.
It is a cycle that can never be forgotten. A small break in my chain of self treatment items and I am back to square one; pain, worry, more pain, sometimes depression. But I am learning how to catch things before they escalate and it is quite amazing how much power I have to control my pain, therefore, my life.
Still,....I send out my warning to people like me. Doctors do not know everything. Listen, think it through, research, second opinions, more pondering. You have control of your medical decisions, not the doctor; though they mostly mean well. Unfortunately, well meaning is not synonymous with what's right for you all the time.
I feel fortunate to be alive. I really do. Kind of amazing the things I've survived at the hands of 'professionals'. So I am sharing my thoughts since I am still around to do it.
Thanks Doctors and I also have to say no thanks to some of you. The next time you see a patient who says they have PD, be still and listen. Then go do your homework before administering drugs. Please. Because doctors do not understand Parkinson's, only the PD patient understands it, maybe. AT least I do, I think.....
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