My Summer Adventure

In spite of my unpredictable state of health, I took a leap of faith and embarked on a ten day road trip to Idaho and Utah to visit family. I really needed to meet my grandson who is all ready seven months old.  I had no idea what to expect stamina wise from my body.  I was pleasantly surprised.  My husband was prepared with a book on tape that made the long stretches of desert road less monotonous.  Ariana had a few books she was avidly looking forward to reading along with her ipod that kept her quite happy as well.

We started our visiting in Pocatello, Idaho at Tracy's parents house. Then went south to Syracuse, Utah to visit my mom and two of my brothers.  Two days before we were to depart California on our trip we were informed that my grandmother passed away.  She was 96 and this was expected.  The funeral had been scheduled during the week of our visit so I was very grateful to be a part of that.  Before the day of the funeral we drove south again to Lehi, Utah and spent a few days with my oldest daughter, Nichole, and her family.

Look how much snow is on the mountains in the middle of July! This was taken from her backyard.

We ordered pizza in and watched a movie the first night and just relaxed and talked.  Before dinnertime, Nichole set up the slip n slide for Brielle.  Aunt Ariana got her suit on and joined in the water fun with her niece.  Brielle copied everything that Ariana did......................

Brielle did not like me taking her picture.

Here's my little sweet cheeks, Beckham happy as always.

The following day we spent a few fun hours at the Linden Aquatics Center. What an amazing place!

It's nestled at the foot of the mountains just like everything in this part of Utah.

A swimming pool river complete with current.

Tracy and Ariana and Brielle in the background with her daddy, Chase.

The following day we said goodbye to Nichole and her family and drove north to spend the day with family from all over the country and to attend my grandma's funeral.  The family name is McDowell; it's Scottish.  It was so glorious for me seeing all my aunts, uncles, and cousins that I love so much.  There are a lot of us and we filled the chapel and then the cultural hall for a family luncheon.  My grandma was an amazing woman!

My mom spoke along with a few of her siblings.  She's nervous speaking in front of people but she did an amazing job and I was so impressed and proud of her.  We then departed south again to the Salt Lake City cemetery for the gravesite dedication. One of my uncles plays the bagpipes and had four other members of the Utah Pipe Band there to play the Scottish Rites, and other tunes like Scotland the Brave and Amazing Grace.

My mom and me before the dedication taking a much needed rest.

Members of the pipe band warming up.

My Uncle Gill and Aunt Ar from Florida. They are always so fun to see.  Ar is always proud to note that she is an Orthodox Jew among all these Mormons. Love you, Ar.

Some of the McDowell clan waiting.

The Pallbearers- left to right.  Gill McDowell wearing the family tartan, my cousin Neal Davis, my cousin Steve Davis, my cousin Ranch McDowell, my brother Brian Hill, my cousin Darren Ottley, and my uncle Chuck McDowell also wearing the family tartan.

All of my grandma's children except Chuck who was waiting to the side ready to play the bagpipes. Seated left to right- Gilbert, Joyce, Margaret, Martha, Elaine, and Annette.

My uncle Chuck playing Amazing Grace for his mother.
I love you grandma.

That same evening we stayed with my dad and stepmom in downtown Salt Lake City.  Towards the evening we joined my brother Scott and most of his family and hiked the 1/2 mile trail to the top of Ensign Peak which overlooks the city on the north side.  I still can't believe I did it.  We watched the sun set at the top with a lot of other people.  It was beautiful.  This is where I was born and raised. It will always feel like home.  Thanks Dad for believing I could do it.

The Salt Lake valley.  You can see state street going all the way out.

I zoomed in to pick out the temple.  Can you see it on the left?

Even on a rocky, desert mountain I can still find a flower.

Looking toward the Great Salt Lake.

My brother, Scott and some of his boys.

At  this point Ariana was tired of pictures.

I love this one.

This beautiful sunset rivals those on the California coast.

 The next day was Sunday and we attended church with my dad at their ward which meets in the Joseph Smith Memorial building on the corner of State Street and South Temple.  It's a beautiful old building with intricate carvings in the details of the architecture and a splendid pipe organ. They usually have 100+ visitors on these holiday weekends.  The next day was Pioneer Day, a state holiday.  One of the reasons for our trip was to see the Days of 47 Parade.  It's the largest parade in the Western United States.  I grew up with this tradition so I felt like a kid again.  We got to sit on the 4th story balcony of one of my dad's neighbors overlooking South Temple.  There were hundreds of missionaries mingling with the crowd. 

The floats lined up down South Temple.  We were seated right at the starting point of the parade route.

They always start the parade with the motorcycle policemen.  Can you hear my dad you-whoin?

The weather cooperated very nicely.  It was overcast and cool throughout the parade.  

I'm always amazed at the creative ingenuity of parade floats.

When there was a lull in the flow of floats my camera wandered.

This news helicopter hovered above us for a few minutes.

What would a parade be without clowns?

A portion of the Utah Pipe Band is visible getting ready to perform. They are what I had been waiting to see. My uncle is there somewhere.

Downtown Salt Lake City is so beautiful I just had to capture some of it.

 

When I was a girl this was the tallest building in downtown SLC.

A fitting patriotic view.

All in all it was a fun and fulfilling experience for me.  I'm so glad I made the effort and so thankful to my husband for all of his help along the way.  He took care of me so carefully the entire trip.

When we got home, we had a newly finished tiled kitchen waiting for us.  Thanks to my talented and generous son-in-law, Chad for the skill and to my son, Cody, who gave up a Saturday also to help.  I love it.

And to top it off, the day after we got home, our air conditioning unit went out.  I guess we can't have our cake and eat it too.  The Lord giveth and the Lord taketh away.........  we'll have a new one installed hopefully within a few weeks.  I hope you all had at least one adventure this summer. 

A Journey of One Day #16 Notes

Much has transpired since I last recorded my progress. Let me catch you up.
The second week in April I made the decision to resume the PD med ‘Sinemet’. My reasons for doing so are as follows-
    *I realized that my digestion was shutting down
    *I was still losing weight; down to 110 lbs.
    *I still could not swallow very well, even my own saliva
It had been 4 ½ months of no meds; a long, agonizing period for me.
Within about 2 weeks of resuming Sinemet (300 mg a day) I started moving better, swallowing, etc.
I am taking a minimal amount of the Sinemet and it is enough. I need to take enough to move but not enough to cause dyskinesia (erratic, uncontrolled movement). Dyskinesia is caused by PD meds. My body still uses the Sinemet very quickly so I take 50 mg every two hours and have pretty consistent ‘on’ time. I will not resume the other PD med, Requip. That one causes obsessive behaviors that I am happy to do without. I am still feeling withdrawal symptoms from Requip, I believe. I have read that it takes an enormously long time to rid the body of this medication. And going off of it can create a scenario something like a stroke. I agree.
These medications are so dangerously complex. The neurology world really does not understand them like you would think or hope they do.
I’m taking my current knowledge from the book ‘Medications of Parkinson’s or Once Upon a Pill’ published online by Janice Walton-Hadlock. It is a comprehensive six-year history of Parkinson’s patient’s experiences with dopamine enhancing drugs and supplements. The web address is   www.pdrecovery.org    entitled The Parkinson’s Recovery Project.
I continue to take a supplement called ‘Aquas’; a homeopathic formula which stimulates cellular detoxification. I take one drop twice a week. It’s that powerful. I also take a line of supplements called USANA. They include antioxidants, CoQ10, a full range of vitamins, amino acids and chelated trace minerals, calcium/magnesium, and omegas. I take these twice a week also. This is the first line of supplements that my body actually assimilates well.
My daughter, Clair, and her husband and baby have moved in with us for a while. She discovered a book called ‘The Raw Food Detox Diet. Together we are following an 80% raw food meal plan. She wants to lose weight and I want some pure nutrition to help my healing endeavor. I couldn’t do this without her to fix the food.  It takes 2-3 hours a day of chopping and fixing. It also entails some specific, consistent shopping for fresh fruits and vegetables; organic if possible, not to mention all of the other raw food items. It’s been five days since we started and I’m all ready noticing some definite changes in my body. I am sleeping better, eliminating better and first thing in the morning. My muscles don’t hurt as much. I am losing my cravings for sugar. They’re not gone but it’s not as strong. I have more daily stamina and more consistent ‘on’ time.
I am still dealing with the chronic pain from the permanent nerve damage in my lower back which affects my right leg. But it’s mostly controlled with minimal pain medicine and not overdoing on bending, lifting, and walking too much. Ballroom dancing has always helped the pain believe it or not as long as I stay away from the high impact dances like Lindy Hop, Fast swing and Jive. The other dances help, I’m told by my physical therapist, because they require the correct lengthening of the long muscles of the legs and the posture of the back is consistently correct, aligned. I’m actually feeling and moving well enough to try ballroom again. My doctors encourage it. There’s a dance tonight we may attend.
My goal is still to heal my body to a point where I’m producing enough native dopamine to function like everyone else. The only dent in that plan is that my brain has been relying on synthetic dopamine so long that I may never regain the full potential of native dopamine production.
Dancing has always seemed to be good for me so I’ll keep at it.

A Journey of One Day #15 Notes

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.

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.

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.

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. 

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.

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.

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.