Notes from Movers & Shakers with Parkinson

Community Roundtable Discussion on Parkinson's Disease

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If you have parkinson's, as I do, or if someone in your life does, than this is a must read. It is full of information for the sufferer, but its most important contribution is in helping both victims of the decease and those who suffer nearby understand what is happening. It is wonderful to have people close to you read this book. It aides in how to continue life on this wonderful planet.

It helps to explain what to expect with parkinson's disease. Easily readable and well written. I gave it to my adult children for better conversation about the road ahead. I particularly appreciated the chapter on nutrition. Granted, it had a lot of helpful information, but for a newly diagnosed Parkinson's patient, it was extremely difficult to read. I am not ready to be advised to cut my steak with scissors, or talk about vocal cord replacement surgery or some of the other things that are discussed in the book.

I understand that the authors are trying to fully explain what might be in our future, but I for one, am forever hopeful and I found this an extremely depressing experience. That is, of course, only my opinion. Lots people needs to read. Caregivers and family should read this. Helps u know what's coming. The author does a good job of sharing her own experience of having PD. That did not begin to happen at the time of diagnosis, it started happening long before then. Being cheerful, makes other people feel cheerful, whereas, being miserable, normally encourages other people to give us a wide birth.

Nobody likes to be around a grouchy, cantankerous person. The inevitable result of dealing with grouchy people is wanting to get away from them. Often, we end up arguing with unpleasant people, because negativity brings out our darker side. It makes them feel appreciated. Otherwise, they may be tempted to call it a day, and leave you on your own.

Male care-givers often leave their partners, when things turn sour! Female care-givers tend to be more supportive, regardless of the response they get from the patient.

But why make their lives a misery, just because you have Pd? They are not the cause of your problem and neither are you, but the way you interact with your care-giver makes all the difference! I knew I had to change mine, because it had become so negative, during the years leading up to the diagnosis. That had been exacerbated by the enormous stress I had been experiencing in my business. My natural fighting spirit had appeared to have deserted me. When did that happen? It only occurred to me - when I sat down and took a hard look at what I had been doing, during the time leading up to the diagnosis —.

I initially blamed everybody but myself, which was only natural.

But when I realized it was all of my own doing, I had to accept full responsibility for my negative attitude. Find out what I did to bring about this change in my attitude. You can order the book on my website: Exercise, positive attitude help runner, author fight Parkinson's.

The Bellingham Herald - When Fred Ransdell's Parkinson's disease troubles him, when it makes him "unusually shaky" or tires him out, he goes for a jog or does chin-ups. His attitude allows him to somehow credit this disease, degenerating and potentially debilitating though it is, with giving him.

Community Roundtable Discussion on Parkinson's Disease

Until Parky as he calls it in "Shaky Man Walking," his self-published autobiography prevented him from doing so, Ransdell spent every Saturday for eight years cleaning fossils there. He also served as president of the Dallas Paleontological Society, and has hiked in the Grand Canyon four times. So I started doing them and I'm grateful I did. He couldn't hold a video camera steadily enough to record the christening of his twin grandchildren.

A year later while driving, he says, "my thumb kept jumping off the steering wheel. I knew what was coming. My sister and father had symptoms of it before they died of other things. I can't imagine myself not being able to run. That alone drives me. He read about an year-old woman who can't walk, but can dance. And another person who can't walk, but who can ride a bike. He only goes to the doctor once a year. His medication and acupuncture help him live a relatively normal lifestyle. On June 4 he'll go fossil-hunting with friends.

He plans to travel to Germany to attend the wedding of an exchange student who lived with him and his wife, Rita. Though he usually sees time as his ally, he writes in his book that "looking toward the future can also be a double-edged sword. Can you tell when you get on theirs?

Is it possible to preserve a loving and open relationship between caregivers and their charges with Parkinson Disease, considering the difficulties involved in dealing day-to-day with a slowly-progressive disease? Those caregivers who represent a clear majority who are partners with the PDers in their care will see their relationships change. This should be no surprise, since the change in roles is often dramatic. The result is often very difficult to cope with. How can we keep communications open and stress levels manageable?

I was diagnosed with PD more than 10 years ago.

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My first reaction was to get home to my husband, Dale. We began dating in college and our relationship had endured over the years, and it was natural to turn to him first with this life-changing news. Although we were frightened by the prospect of what a future with Parkinson would mean, we tried to be optimistic. And, after some trial and error, medication seemed to control most of the symptoms.

Physical changes occurred slowly; I fell a couple of times while jogging, slipped on the ice and broke my nose; I realized that I had lost depth perception. This made navigating stairs, curbs, etc. He continued to be helpful around the house. Two other pertinent factors to consider: I participate in a rigorous exercise program, which I believe has been instrumental in slowing the progress of the disease. And, I am taking medication that can influence behavior.

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Although I do not exhibit blatantly compulsive behavior, I notice that there are some activities that I cannot leave until completed. And I am much more easily distracted; periodically I seem to have lost the single-mindedness of purpose that I used to have. As Dale began to understand where the shortcomings were in my daily routine, i.

Each of us saw the other as insensitive and unappreciative. Once anger set in, there was a real potential for a downward spiral. We needed to sit and talk and realize that each of us needed to know that the other was in fact doing his or her best to resolve issues, and that they were not trying to exert control over the other. It may not be appropriate for us to try to be in charge of all that was in our span of control. It may be time to reprioritize, or to stop doing certain things!

The only way that we can move forward with a fresh outlook, is to assess these issues and determine what we can let go of, and what our new reality is. We are determined to continue to communicate with each other about these sensitivities. She was diagnosed with PD more than 10 years ago. Feeling Sorry for Myself. I, John Pepper, felt so sorry for myself, when I was diagnosed in , that I gave up my position, as Chairman President of a large printing company, which my wife and I had fouded in , and stayed at home, feeling sorry for myself, for two years.

The only thing I did was to take my medication, go to the gym every day, for ninety minutes, and then sit and read a book and listen to classical music, all day. You don't need to be told that I often spent more time sleeping, than I did reading. I turned day into night.

I could not sleep more than three hours a night. This made me turn my light on, every night, when I could not sleep, thus disturbing my wife's sleep. She had selflessly told me to do this, when I could not sleep, as she did not want me getting up and reading in another room. She preferred to have me close to her, so that if anything went wrong, she would know about it. After two years, I decided that. I could not carry on in this way. I had to take some action. Instead of reading my book, I thought about my condition and my reaction to it.

I had always been a positive, highly motivated person,. None of us knows that we are in depression. Others know it, but we don't. We know when we feel depressed, but that is not the same thing. Everybody feels depressed, on occasions, but they normally snap out of it. Nobody feels highly elated all the time; they also snap out of that fairly quickly. In my business, when things went wrong,. I used to analyse the situation and decide on a course of action. Why had I not done this with my Parkinson's? The only reason could have been that I had been told, by my neurologist, that.

Parkinson's is a progressive neurological condition, for which there is no cure, and for which we can do nothing! What is the sense in fighting, if there is nothing we can do about it? The first thing I did was to stop going to the gym every day. This was because my performance was getting noticeably worse, all the time. Not only did this depress me, it made all that effort appear to be a waste of time! Every month, I had had to reduce the amount of weight I was setting on each machine, and the resistance I was setting on the treadmill and bicycle.

I was getting nowhere fast! When I told my wife Shirley that I had stopped going to the gym she was very upset, because it was the only exercise I did at all. She wanted me to try it. She twisted my arm and rather than do nothing, I agreed to walk, three times a week. I had been doing twenty minutes on the treadmill, twenty minutes on a bicycle and twenty minutes on a step-climbing machine, every day, six days a week. I had to start walking for fifteen minutes every second day.

After two weeks, I was allowed to increase it to twenty minutes. Then, every second week, I was allowed to walk another five minutes longer. At the beginning, I was able to walk for one kilometre in over ten minutes. That was about one mile in about seventeen minutes. That was not very good, but it was not all that bad either. After three months, when I was walking for forty minutes each time, and I had improved to less than nine minutes a kilometre, I knew my condition was improving!

To my amazement, I not only found that I had increased my distance, which did not surprise me, but I had also significantly improved my times. You have no idea what effect that had on my mental state! There is a lot you can do to change the progression of your. That was when I started to feel positive about myself! If you are feeling sorry for yourself, then start to change that situation into one where you have a positive attitude!

Repeat your walk three times that week and again the next week, leaving at least one day in between walks!. Increase your time by five minutes every second week, if you were walking for ten minutes or by as much as you can, if you started at less than ten minutes. Keep increasing the time every second week. If you don't know how far you have walked, then take a drive in your car and measure the distance. That improvement will start you to become more positive about yourself and your future.

Don't walk for more than one hour and don't walk for more than three times a week. If you over-exercise, you will do more harm than good! Read all about exercise on this website - www. Program gives patients support, knowledge to cope with Parkinson's disease. Then they want to teach you how to use a walker. The Fort Myers retiree had no plans to use a walker. Instead, she enrolled in the.

Hope Parkinson's Program at Hope Hospice. Now she feels empowered and supported by a community that understands her challenges. And the new program is bigger and better than it has ever been, she said. The goal is to provide coordinated care, which includes: There's even a cruise for Parkinson's patients and their families in January.

It's good to have other people to talk to, so they don't feel isolated. But sometimes it's difficult to encourage newly diagnosed people to come to the Parkinson's Program, when they hear, Hope Hospice , Lewis said.

It's a new challenge," she said. And it affects millions. In the United States, about 60, new cases of Parkinson's disease are diagnosed each year, adding to the four million people who suffer from the condition, according to the Parkinson's Disease Foundation. It is a chronic neurological condition that is progressive and causes tremors, slowness. There is no cure and no known cause for Parkinson's disease.

Most people are diagnosed after the age of We go to exercise class once a week together and attend some of the programs. William here, I want to tell you John Pepper's story as he related it to me. John's story is a story of passion and excitement that I want to share with everyone, especially those that suffer from Parkinson's disease.

In his book, he claimed that: To put this claim to the test, John consulted another eminent neurologist, who said that: This neurologist did not carry out a proper clinical test on John. But, as he states quite clearly in his book, he still has many of the symptoms of Parkinson's disease, but because he has been able to overcome most of the movement problems, he is now able to live a perfectly normal life, providing he maintains his new life style regimen.

Why not find out what those lifestyle changes are? That is a good question! Speech Therapists use some of these solutions and Cardiologists use others, to treat people with heart problems! Business people use other solutions to improve their business skills! Parkinson's disease is a movement disorder, and part of his regimen involves strenuous exercise, and who would think that that would be a possible solution? What type of strenuous exercise is John recommending?

You will have to read his book to find out how he came to the conclusion that walking was the single best exercise to do for Pd. He also does other exercises for strengthening his core muscles, but the answer to this question has to be put into a routine that most Parkinson's disease patients will be able to follow, without injuring themselves. John has been there! John also knows that unless the Neurologist insists on his patient carrying out these life style changes, or the patient knows for certain that other patients have successfully done it , then the patient will never commit to this routine.

It is much easier to take pills and accept what the future has to offer! Why does John not claim to be cured? Because he is not cured! If he stops his routine, due to other health problems, of which he has several, then his Parkinson's disease starts to deteriorate again. If ever he stops exercising, or whenever he got clever and stopped taking his medication, during those ten years after being diagnosed, then his condition got appreciably worse. Why does John no longer take.

Thank you for reading this story,. My name is John Pepper. Why is insomnia so difficult to treat? Medication is the obvious route to use, when faced with the inability to sleep! The problem that I faced was that my body became accustomed to whatever type of sleeping tablet I took, with the result that I had to continually increase my dosage , in order to be able to sleep.

That was no good for anybody.

Community Roundtable Discussion on Parkinson's Disease

There was also the problem of possible addiction, which I did not want or need. I did find that there are some off-the-shelf medications that worked, but I was not happy about taking any regular medication for sleeping, because all medication is toxic, and the body has to cope with enough problems without any unnecessary medication.

I have now got to the stage, where I get five to six hours a night, without any medication, and that appears to be enough for me. I have to avoid watching TV during the daytime , as that sends me to sleep very easily. I also have to avoid anything else, which causes me to fall asleep. I organised my bedside light to be positioned above my head, facing away from the other side of the double-bed. In that way, I did not disturb her, when I read during the night. I found that walking also helps me to sleep better. Category Filter Show All Articles.

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