PD - yesterday and today
 

Rosebud posted the note below in another thread that made me think about several things-
I know two people my own age who were diagnosed about the same time I was eight years ago. One is a woman who is our local mayor. The other is a farmer. Both were/are friends of mine. Both are incapacitated. I have fared much better and wonder why. Some things are obvious to me - the mayor's job was extremely high stress, for example. The farmer's family is very conservative and eschewed even so much as a vitamin tablet.

But the differences between us are so dramatic that it is hard to believe it is that simple. Beverly is bedridden and Jim's cognitive state is almost Alzheimers. The only other factor I know of is Beverley's fondness for diet sodas.

Does anyone else have similar comparables to rate themselves with? Does it vary so much in your circle?

Whatever I can, and occasionally only what I want to. Yes we are all very different. I am an YO PDer and have had it for 10 years. Whaile its true that some of us get a lighter sentence than others, I have found that attitude and personality make a huge difference. The first support goup that I joined and still occasionally attend had extremes on both sides of the see-saw. There was one fellow who was total wreckage as far as I could tell, and that was more than 10 years ago now. He is still total wreckage, and as far as I can determine there is little to no change in his PD. He often scares newly diagnosed people and he was a bit of an "image" problem for the group. We all should do so well. On the other hand 3 others who were managing their PD well (or so it appeared) have died of their disease, or at least of directly related causes. So much for appearances....it means very little.

As most of you know I preach diary, journal; and recordkeeping to an obsessive level. I have learned the following things WRT my PD.
1. If I take sinemet between 11:00 PM (bedtime) and 7:00 am (rise time) my meds will not work as well the next day.
2. If I eat too much high GI food, or "goodies" I will have what I lovingly call "Sugar shakes" or an excellerated tremor for a day or two after.
3. If I get some exercise (treadmill:20 minutes) I will have a better day.
4. If I sit at the computer too long I will be stiffer and not sleep as well that night.
5. I must eat right AND at the right times or I will have to pay according to the laws of the PD universe for my carelessness. There is NO MERCY

Nancy
 

was my pd pal of the past 4-5 years. We had a lot in common and I enjoyed our friendship. We both lived alone, had one grown son, enjoyed painting, were close in age and size and had had pd for about the same amt of time. She was doing better than I when we first met, yet last July - a year ago - she died. The death certificate says from PD. She believed her downturn was accelerated by the fractured hip she got as a result of a "mugging." I think so, too. It landed her in a nursing facility temporarily but she never really "got back on her feet" after that. She was able to go home but steadily declined in spite of her valiant afforts to take care of herself. Lots of trips to the emergency room, back to nursing homes, care givers, lots of stress about what to do with herself....which, I am now learning, is a big concern for many of us 'single' pd'ers. She died in a hospice facility, unable to be understood. Her tongue wouldn't move. We resorted to her trying to spell her words over the phone during our final conversations. I felt relieved and at peace for her when I learned of her death. Nancy was wise and witty and I miss her companionship on this journey.

PD is as unpredictable as life itself. One can never really be certain what 's around the next corner.

This time last year I was certain that I was actually recovering from PD. Overnight that changed - and I'm not sure why, tho I have suspicions. At this time I am struggling to regain my lost footing.

I recently learned that gluten is neurotoxic and have been gluten-free for almost 2 months and am noticing slight improvements in tremor and gait. I realized this when I 'cheated' and had instant 'results.' It took about a week to get back to the improved state. To be continued...

Thanks, Rick, for the topic.

"Eating Right" with PD
 

I would like to learn more about eating right with PD. Can anyone share some references so I can do some reading on the subject?

Thanks,

Karl

So hard to know.
 

Until our little vacation in The Lake District I thought I had found the right combination of vitamins, herbs, foods and medicines. But most of all I felt that with humor and will power, I had control of my well being. For the past couple of years I have felt more or less in charge of my PD, and aside from constant pain in my hip from two falls and a bad back, I was feeling much better than I did four, five years ago. When physical therapy miraculously cured the pain, I felt so well that I jokingly told the medical student at U. of Pa. Hospital, when he greeted me for my 6 month visit, that I'd get over it yet. He was quite taken aback.

But then suddenly my feet went on strike again, my legs hurt, everything hurt, I was frightened of doorsteps and of going down stairs, I banged into walls and couldn't get up from chairs. The vacation felt like boot camp, I forced myself to sightsee, when all I wanted was to stay in bed. Will power kept me going, but the going was with a limp and a lot of pain. Humor of course was still the biggest help of all, but it wore a bit thin at times.

I was absolutely astonished to take such a downward spiral, I was shocked and disappointed. But all I needed to do, and thank goodness I finally tried it, was to take Amantadine again. Will power and humor go a long way to help, but it really came home to me that I am not getting over this no matter how hard I try and how much I wish I could. I need the medicine.

However, I still take as little medicine as I possibly can to function well. And I don't give in to the temptation to sit about or lie about and be helped with fetch and carry. Staying active is vital to feeling well.

Officially my PD started when I was 59, but I had symptoms for many years before that. The symptoms were mild, and progression was very slow, I thought I was just clumsy when I fell and when I banged into door frames, and just gangly when I froze in place and felt stiff and unable to turn, and just nervous when I couldn't handle stress. I'm glad I didn't know I was ill. I felt strong and healthy until I could not ignore the signs any longer no matter how hard I tried.

I have only myself as comparison. I know no one with PD outside this forum, but when I compare myself with everyone in the forum I feel I am doing well. The one symptom I have been spared is depression. That alone gives me a huge advantage in well being, in coping with the physical symptoms, and in keeping my intake of pills to a minimum.

Writing for John
 

Johns history of P.D and how he is doing?
At leasr 25 years ago he developed a tremor in his left leg if annoyed or excited.Was this related to P.D?I do n't know.He reminded me that when in a restaurant 8 years ago he suddenly had his legs go under him when he went to stand....no pins and needles and only one glass of wine.Was that P.D? Do not know When our grandson was born exactly 9 years ago he could not hurry to get there.We are both convinced it was PD. The specialist nurse is not so sure.About 4 years ago he developed a slight tremor in right hand when running which became noticable to others about 3.1/2 years ago Officially diagnosed exactly 2 years ago when he went to see specialist neurologist ; so he is still in early stages.He is on 13 mg Requip only(U.K neurologists seem to prefer to start this way).His main symptom is tremor in his right arm which can be troublesome as his whole arm goes at times.His leg still tremors and he drools.
He was an extremely active man in that he regularly ran marathon so trained every day running 50 -55 miles a week. Did traditional forms of dancing at least once a week.Also played squeeze boxes frequently.Retired at 50 with golden handshake as job ceased to exist so no real stress for 15 years.We realise that we are very lucky .I wish I had appreciated those days more.
How is he doing now?
He still keeps up all his activities.Obviously not to the same standard but whilst in Greece last week he ran for 40 minutes each morning followed by a gentle swim of 20 minutes.Still plays his squeeze boxes although he complains his fingers do not come off the keys fast enough so he has lost his crispness.He is very positive and is thankful that as yet he does not have any real problem with stiffness :he is a bit slow and on occasions and stooped.We realise that we are only at the beginning of a long and very hard journey and that others are not so fortunate especially those who are young onset.At our age in our mid 60s we can look around and see friends who have other complaints which are just as debilitating and/or painful.I am not trying to belittle the trials and diffiiculties of others and realise he is in the honeymoon phase.Obviously others are not as fortune.I would like to know whether others have a similar history and that is why I have written in such detail.

small samples...
 

,,,but it's a start.

John is most active and has the slowest progression.
Rosebud notes the importance of insulin and food/
Birtie ran into trouble on vacation.

The more I learn the more convinced I become that, regardless of cause, our present state is one of extreme fragility. It is like living on a knife edge. Routine is so important. Stress is so deadly. Blood sugar fluctuations ditto.

Anyone ever worked with an endocrinologist on this?

There are many causes of PD. People with different mutations may have different varieties of the disease. I read about LRRK2 mutations, and even family members with the same genetic flaw can have different symptoms and different age of onset.

Even the pathology is different when they view the brain at autopsy. They call it pleomorphic pathology. So their brain is affected differently, so of course their symptoms will differ and so will the course of the disease.

It's not as simple as stress or diet.

stress and diet yes, simple no
 

PD is not a disease but more a collection of symptoms coming from a collection of causes. Think of a restaurant's buffet. You go and fill your plate from the many choices (possible causes) and end up with a unique meal based on your selections (individual case of PD).

Maybe there are two dozen possible factors that can lean you toward PD. Genetics. Early life. Home environment. Virus. etc. No single one is enough, but start adding them together and the risk increases. And the outcome varies based on the input and the individual and luck.

Bot once we have it there are common elements. Stress sensitivity seems to be one. Immune response seems to be another. Others?

Common element!
 

Response to Sinemet - almost diagnostic of Parkinson's. Is diagnostic. What does that stuff really do, anyway? Does anyone really know?

Karl, you can try this website: Nutrition You Can Live With, by Kathrynne Holden.

Murray Charter...rest his beautiful soul...who credits Kathrynne Holden MS RD, is still online and has a few more URLs that you can try: Managing Parkinson's & Nutrition


MyParkinson'sInfo also has a few topics: http://www.myparkinsonsinfo.com/cate...ion_exercise/2

:Good-Luck: