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.
Wednesday, January 19, 2011
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.
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