The Five Most Important Actions Needed to Take Control of Parkinson’s Disease
I am not a doctor, I am a Parkinson’s Patient with 51 years of experience. These are the actions, which have helped me:
1. Regular Energetic Exercise
2. An MAO-b Inhibitor as the only Medication
3. Learn how to Take Conscious Control of all movements
4. Manage Stress Levels
5. Adopt a Positive Attitude
It's true: Parkinson's stinks!
Copied from The Northwest Parkinson’s Foundation Weekly News Updae
Ann Miner Heimback - It happened again last night. I was snoozing peacefully when I was awakened by the stench of the local skunk. Since I was having trouble falling back to sleep, with eau de skunk fragrance lingering in my nostrils, I began to think about what to write in this week’s column, and
how I could relate the skunk incident to Parkinson’s. Then it hit me. Parkinson’s stinks!
Its stench permeates the patient through and through with denial, then acceptance, then with questions about what, when, why, how? What happened? What is Parkinson’s? What can I expect for my future?
Why did it happen to me? Why do I feel this way? Why don’t others understand?
How long will I feel good? How long before I lose my abilities to do daily tasks? How long will I live?
Most of these questions can be answered like your mother used to answer you: Just because, and I don’t know, it just is.
Yes, a diagnosis of Parkinson’s disease is a shock. It is devastating and scary. However, it isn’t the end of your world. You can go on, and you can have a quality life.
Are you feeling angry with your situation? That is not uncommon. Part of the anger probably comes from loss of control in our lives – not that we really ever had control –but so it seemed.
God is always in control, and when we let go, life is much easier. We spend so much time anticipating what will happen next that we forget to participate in what is happening now.
Did you happen to catch that magnificent sunrise this morning? In my back yard in Apple Valley, dozens of Goldfinch nibbled on the sweet seeds of Nyjer, as four others danced around the rim of the birdbath, looking for a drink and a dip.
The squeals of baby squirrels, romping and tumbling on the lawn, caught my attention, while five baby bunnies, with white powder-puff tails, leapt in the air and ran around the greasewood playing tag.
I watched a lizard dig a hole. Its little front legs moved almost too fast to see.
There was a fuss when a scrub jay couple fought to help their fledgling, fallen to the ground — but they couldn’t get past Papa Quail, who threatened to attack in order to protect his fuzzy little babies. Finally, the baby jay hopped into the bushes, the Mama Quail herded the little quail covey into the brush, and peace returned.
A hummingbird sipped sweet water while I held the feeder in my hand. And it dropped teeny tiny poop on my arm. Wow! What a treat!
All this, and a coyote, too, which loped across the front property after her morning hunt.
Look around your life and find away to participate in it. Take the stench out of Parkinson’s , if only for a few minutes. Happy hunting.
Hi, this is John Pepper!
Attitude plays an important role in maintaining our overall health, especially when we have a chronic illness. I do understand that, not feeling well, is reason enough to be negative, but it is exactly under these circumstances that we must endeavour to maintain a positive attitude.
We People with Pd have been conditioned to accept that, until a cure is found, there is NO HOPE of any improvement in our condition. We must expect our condition to deteriorate, until we become totally immobile.
I refuse to accept this prognosis.
It would be better if patients were told that, with a commitment to regular exercise, adopting a positive attitude, managing our stress levels and taking an MAO-b Inhibitor, there is a good chance of at least maintaining our present condition, without it getting any worse. There is ample proof that certain exercise regimens can definitely slow down the progression of Pd. So!
Why is it really necessary to tell us there is NO HOPE?
NEGATIVE thinking generates negativity all around. This negativity spreads to others, and becomes a self-fulfilling prophecy. POSITIVE thoughts tend to generate positive actions. They also generate enthusiasm among other people, with whom we come into contact.
I have never met a successful person who constantly sends out negative vibes.
We all have the occasional negative thought. It is only natural, but we all have to guard against becoming negative in our outlook on life. If we do, then we can only become disillusioned and unhappy.
Adopting a negative attitude towards Pd is the worst possible approach to take. You cannot maintain or improve your quality of life if you believe that it is not possible.
Depression is part of Pd. I believe it to be the worst symptom of this disease, because it takes away our will to fight. It also does something else, equally as damaging, by making the lives of our caregivers very unpleasant. It is one thing for the caregivers to tend to our needs, but it is another, to have to put up with criticism and irritability, from the very people they are trying to help. Not only does depression make us irritable and uncooperative, it gives our caregivers the feeling that what they are doing is futile.
Imagine what difference it makes, to the lives of those wonderful caregivers, when we proffer a smile and a kindly word, even though we are feeling bloody miserable; instead of a complaint or a hurtful remark. There is no doubt that not only does a cheerful attitude make an enormous difference to the lives of those around us, it also makes a difference to our own lives.
It is so easy to drown in a sea of self-pity.
I firmly believe that, other than taking the prescribed medication, you, the patient, are the only person in a position to genuinely improve your own quality of life. In order to do this, you must:
'BELIEVE that you can do it’.
For more information on attitude and many other aspects of Pd, look at my website:
Attitude – How it affects the Progression of Parkinson’s Disease
Do you have the right attitude, to deal with a serious, progressive, degenerative, neurological disorder, like Parkinson’s Disease?
It is common for mildly affected Parkinson’s disease patients to suffer severe psychological problems, while other patients, with pronounced Parkinson’s disease symptoms, live happy, well-adjusted lives.
They all have Parkinson’s disease, but the way they handle it, and the way they carry on their life is dictated by their attitude.
Attitude is the way we choose to face up to life! It is our approach to how we face up to our problems and the way we deal with other people. We can take a positive attitude to life, and enjoy our interaction with others, or else we can take a negative attitude, which normally brings about a negative response from others, and makes our lives less enjoyable.
There is No in-between.
Our attitude can’t always stay the same, it changes from moment to moment, but it normally stays fairly constant, until something significant happens to us. So,
Why not set about making your attitude a POSITIVE one?
If you were like me, when I was diagnosed with Parkinson’s disease, my attitude towards life had become, generally, very negative. This was because my health had been deteriorating for many years.
I had always been a very upbeat, positive kind of person. I was running a business, in which I was the major shareholder, and had to be upbeat, if I were going to succeed. However, I realised, two years after diagnosis that I was
Wallowing in self-pity;
I had become very negative about life. 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.
Your care-giver may have no choice but to be with you, so why not make it easier for him/her, by giving him/her a smile, instead of a complaint, or just a grunt, when they do something for you? 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!
The first thing we all have to do, when Parkinson’s disease makes its unwelcome entrance into our life, is take a hard look at our attitude! 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 –
my attitude had done a one-hundred-and-eighty degree turn-around.
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. Order your copy of my book, ‘Reverse Parkinson’s Disease’ today, and set about changing your life, for the better!
You can order the book on my website:
Exercise, positive attitude help runner, author fight Parkinson's
Copied from The Northwest Parkinson’s Foundation Weekly News Update
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.
"I'm happy every morning I get up that I can get up,"
says Ransdell, who lives in east Richardson and who turns 68 on Wednesday.
"When I think about what can go wrong, I go jogging and grind it out of my head."
He is a man who has made optimism his only option, a half-full glass the only one from which he allows himself to drink. His attitude allows him to somehow credit this disease, degenerating and potentially debilitating though it is, with giving him
"the best 10 years of my life."
Realizing that may sound somewhat odd, he clarifies:
"Having Parkinson's has made me do things I otherwise would have put off."
Having the progressive disease, which attacks the nervous system, spurred Ransdell on to spend more time in a passion previously only dreamed about: paleontology. Around the same time his illness was diagnosed, he started volunteering at the Dallas Museum of Nature & Science.
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.
"Once I got Parkinson's, I had the opportunity to do this stuff and I went hog wild with it,"
"I didn't know how much time I'd have to be healthy enough to do those things. So I started doing them and I'm grateful I did."
His earliest sign of having the disease came in 1996. 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." Six months later, Ransdell went to the doctor for what he thought was tennis elbow, and mentioned the "jumping thumb" symptom.
"He did a full physical on my arms and hands and said for now he'd call it a benign tremor," Ransdell says. "Then he looked at me, raised an eyebrow and said he may eventually have to diagnose it as Parkinson's. I knew what was coming. My sister and father had symptoms of it before they died of other things."
That doctor prescribed medication, and in 2001 sent Ransdell to a neurologist for the official Parkinson's diagnosis.
"The neurologist told me if I don't keep moving, my muscles will atrophy,"
"That fired me up. I can't imagine myself not being able to run. That alone drives me."
So do stories about others with Parkinson's. He read about an 82-year-old woman who can't walk, but can dance. And another person who can't walk, but who can ride a bike.
"Something about Parkinson's is fascinating," he says, "unless you have it."
Ransdell considers himself lucky. 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." Better treatments and even a cure could be a possibility, as could unforeseen obstacles.
"It can give me cause for fear," he writes, "but I've learned so much and come so far in appreciating my life thanks to Parky's constant meddling."
"Notes from Movers & Shakers with Parkinson”: How You See Your Changing Roles
Copied from The Northwest Parkinson’s Foundation Weekly News Update
NPF - Does your spouse ever get on your nerves? 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? In doing research for the book “Notes from Movers & Shakers With Parkinson”, we observed that while there was helpful information available focused on physical and logistical problems, there was little discussion in Parkinson Disease (PD) forums about the effect that changing roles has on the relationship between spouse and patient, from their own perspectives.
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. 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. We talked about our fears, our priorities, and made some plans, including a short “bucket list”. Since I was not able to function at the high levels of stress that were part and parcel of my job in a major financial institution, I left the corporate world and worked on special projects, mostly editing, including my husband’s books – he’s an author.
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., very tricky. My husband became a human GPS, as we walked along –“Watch the curb on the right”, “There’s a step-down right here”, “Hold on to the railing”. 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. It’s important to remember that Parkinson’s is described in some places, as a movement and behavior disorder. Although I do not exhibit blatantly compulsive behavior, I notice that there are some activities that I cannot leave until completed. I joke about having “OCD” (Obsessive Compulsive Disorder). And I am much more easily distracted; periodically I seem to have lost the single-mindedness of purpose that I used to have.
All of this brings us to the effect PD is having on my relationship with my spouse/caregiver. As Dale began to understand where the shortcomings were in my daily routine, i.e., difficulty getting most things done on time, moving from one project to another without completing either… he developed ways to keep me on time. (Reminders an hour and half-hour before we’re to depart, staying “on my case” when he sees me leave the laundry without filling the washing machine to do something else). At first I took umbrage at his “telling me what to do” and acting like a parent. And he took umbrage at my “not taking his help and continuing to be disorganized, late, etc.” We were both angry at each other’s stubborn stance. Each of us saw the other as insensitive and unappreciative. Once anger set in, there was a real potential for a downward spiral.
That famous line from the movie “Hud”, “What we got here is a failure to communicate”, is at the base of this problem. 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. And, it may be difficult to understand that what seems like an easy thing to do, like “pay attention”, takes much more effort and concentration than it used to. And, that we might have to adjust our behavior, and to give up some of that “control” in order to enhance the day-to-day functionality of our lives.
As Dale pointed out, there is also a real need for both of us to “let go” of some things. 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! And closely related to “letting go”, is accepting what is the new reality. 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. I am convinced that if we can stay in touch with each other’s feelings and needs, not only will it help our daily lives, it will enable us to stay as healthy and as happy as we possibly can. We’ll be able to get past coping, and move forward to enjoy life.
Chris Ludwig, worked in a variety of capacities, before writing “Notes from Movers & Shakers with Parkinson”; she was a tax-preparer, a TV “Weather Girl”, and before retirement, a Vice President of technology for a major financial institution. She was diagnosed with PD more than 10 years ago. She’s an avid exercise practitioner, a novice tap-dancer, and believes strongly that “Exercise is medicine!” Chris now lives and shakes in Florida and Cape Cod with her husband Dale, where she continues to appreciate every day with joy and enthusiasm.
For more information or to order “Notes from Movers and Shakers with Parkinson,” please visit www.createspace.com/3747802 .
Feeling Sorry for Myself
I, John Pepper, felt so sorry for myself, when I was diagnosed in 1992, that I gave up my position, as Chairman (President) of a large printing company, which my wife and I had fouded in 1970, 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. In fact,
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 realised that
I had always been a positive, highly motivated person,
but I had become just the opposite. I had become
negative and totally demotivated.
This had not happened in the previous two years, nor even in the previous ten years, it had happened at about the time that I was diagnosed with chronic depression. 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 had been going to 'Run/Walk for Life' for the previous two years and her physical condition had improved so much that she was very enthusiatic about it. 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. What could walking for fifteen minutes, three tmes a week, do for me?
That was one of those times when I was glad I was wrong!
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.
THAT WAS THE TURNING POINT IN THE PROGRESSION OF MY
You have no idea what effect that had on my mental state!
The Neurologist was WRONG!
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!
That will not happen unless you believe that it CAN HAPPEN!
1. If you do not do any exercise, then start to walk, as fast as YOU CAN, for as little as one minute.
2. if you are able to do more than that, then don't do more than ten minutes.
3. Make a note, in a diary, of how far you walked in that period of time, and what the time was.
4. Repeat your walk three times that week and again the next week, leaving at least one day in between walks!.
5. 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.
6. Keep increasing the time every second week.
7. You will notice, if you have been keeping a proper note of your distance, that the distance has increased or the time has reduced, since you started at that time. If you don't know how far you have walked, then take a drive in your car and measure the distance.
8. That improvement will start you to become more positive about yourself and your future.
9. 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.reverseparkinsons.net, or better still, puchase a copy of my book, and read all about what else you can do about improving your condition!
Program gives patients support, knowledge to cope with Parkinson's disease
news-press.com - Marian Lewis felt powerless when doctors diagnosed her with Parkinson's disease in October 2009.
"Doctors aren't always so nice when they tell you,"
said Lewis, 73. "They tell you there is no cure and then you have to go to physical therapy. 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.
Hope Hospice took over the Parkinson's Program from Lee Memorial Health System about two years ago, said Samira Beckwith, Hope Hospice president and CEO.
And the new program is bigger and better than it has ever been, she said.
The goal is to provide coordinated care, which includes:
- life enrichment classes
- educational workshops
- exercise and movement classes
- social programs throughout Lee County.
There's even a cruise for Parkinson's patients and their families in January.
"It's alarming how many people are impacted,"
Beckwith said. "The disease changes their entire social circle, and they all need support. 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.
"This is not the end of your life, it's the beginning. It's hope. It's a new challenge," she said. And it affects millions. In the United States, about 60,000 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 50.
"The disease changes everything," said Bob Lewis, who cares for his wife. "Our lives have changed. We go to exercise class once a week together and attend some of the programs." But it hasn't changed his wife's outlook.
"Knowledge is power,"
Marian Lewis said.
"We share tips with each other. I have gotten BETTER!"
Villagers utilize Parkinson's Exercise / Support Group to keep progressive symptoms at bay
The Villages Daily Sun - Josana Katz doesn’t seem like the type of person who would belong to a fight club. She has a cheerful, friendly presence and is known for her habit of welcoming just about everyone with a hug.
But despite appearances, the Village of Mallory Square resident is the leader of a large fight club meeting every week at Chatham Recreation Center. What makes this group different is that the members aren’t fighting against each other; instead they are all fighting against the same disease.
The Parkinson’s Exercise/Support Group, also known as the Parkinson Fight Club, is a group where people with the disease can find support, information and exercise routines to help keep the progressive symptoms of Parkinson’s at bay.
“The point is that this is a battle every single day, and we plan to win it,” Katz said.
Stopping the progression of a progressive disease
Katz said “When people find out they have the disease, many react to the diagnosis with feelings of depression and the attitude that there is nothing they can do to fight back”.
“We do have to overcome the attitude of defeatism,” she said. “You have to have the attitude of:
‘Yes, I can do something.’”
According to Katz, exercising is a vital part of delaying the progression of Parkinson’s disease. The group focuses on stretching, strengthening and balancing, which are the areas Parkinson’s affects most.
“Moving is imperative to the Parkinson’s person. If they are willing to move, they can eventually:
push back and keep from deteriorating.
They don’t have to end up in a wheelchair,” she said.
Strong motivations, positive attitudes
After being diagnosed with Parkinson’s one year ago, Village of Woodbury resident, John Lord said he was looking for a group to help him handle the disease when he discovered the Parkinson Fight Club.
“I think originally it (the diagnosis) probably was a blow, but after awhile, I realized I wasn’t going to let it get me down,” he said.
Now, he not only attends the exercise/support group meetings, but he also leads the group in working on strengthening and stretching muscles with exercise bands. He also exercises every day at home with the routines he’s learned from the group.
“It’s part of my way of fighting,” he said. “We try to get people to fight it. It’s become a vital part of my life. I don’t miss it if I can help it.”
The dedication to exercising is something Rob Granger, of Hickory Hills Hammock, can relate to. He credits the group’s exercises to keeping the development of his Parkinson’s in check.
“I don’t think it’s gotten worse. It’s gotten better,” he said of his experience since he began working out with the club. “It really benefits everybody with Parkinson’s.”
He has noticed improvement in his ability to walk, balance and grasp objects, which are things he was having trouble with, before joining the group a few years ago.
“I can do those things now,” he said, adding he is motivated to keep up his exercising so he can take care of his wife, who is incapacitated. “She needs me, so I have to make sure I’m physically fit.
That’s a good enough motive.”
It’s hard to see any signs of Parkinson’s disease in energetic and active group member Gary Ingram of the Village of Chatham. Diagnosed with the disease 11 years ago, Ingram said he had a revelation that he didn’t have to end up in a wheelchair with Parkinson’s. He learned he could fight back against it with a healthy lifestyle and a positive attitude.
“I thought, ‘My God, you can actually get better with this disease,’”
When he found out about the optimistic approach of the Parkinson’s Exercise/Support Group, it became one of the main reasons he decided to retire in The Villages. He said the group keeps him physically functioning, but it also helps him avoid becoming depressed about having Parkinson’s.
“You have to be around positive people,”
“This is the best support group in the world. There’s something for everybody.”
Additional Unnecessary Information:
Parkinson’s disease is a motor system disorder that is chronic and progressive, causing four main symptoms, including tremors or trembling in the hands, arms, legs, jaw and face; rigidity in the limbs and trunk; bradykinesia, or slowness of movement; and impaired balance and coordination. Because the chronic disease is progressive, symptoms can get worse over time.
Although Katz doesn’t have Parkinson’s, her husband, Lou, was diagnosed with the disease five years ago. Ever since, Katz has looked for ways to help him stay strong and healthy.
When the Parkinson’s Exercise/Support Group in The Villages was in danger of ending, because the former leader couldn’t continue organizing it, Katz stepped up to take over. She said she wanted to give the group a positive, uplifting atmosphere, while teaching the members productive ways to fight against Parkinson’s both physically and mentally.
The support group side of the Parkinson Fight Club does a lot to keep members’ spirits up with:
· weekly side groups getting together for activities ranging from dancing at Spanish Springs Town Square
· the Parkinson’s Philosophers
· the Parkinson’s Cards/Games Club.
At the regular exercise/support group meetings:
· guest speakers
· motivational skits
· other activities are mixed with creative and fun exercise routines.
As for Katz and her husband, the group has kept them:
active, involved and working together to fight Parkinson’s.
All the work is worth it, she said, when she sees what a difference the group makes for her husband and others in the community.
“It’s just keeping everybody pumped up and motivated and excited about life, always looking forward and being positive,” she said. “I want them to look forward to tomorrow. I want them to look forward to next week, next month, and I want them to look forward to next year.”
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 2002, John wrote his first book – “There IS LIFE After Parkinson’s Disease” - but doctors complained that the title claimed that his Parkinson's disease was now in the past, and he was therefore cured, even though he says he is not cured – so he changed the name of the second edition to - “There IS LIFE After Being Diagnosed With Parkinson’s Disease”.
In his book, he claimed that:
“Nobody would ever know he still has Parkinson’s Disease”.
To put this claim to the test, John consulted another eminent neurologist, who said that:
“You do not have Parkinson’s Disease. There is no cure for Parkinson's disease, therefore you never had Parkinson's disease”
This neurologist did not carry out a proper clinical test on John. He mainly based his opinion on John’s outward appearance, which certainly did not look as if he had ever had Parkinson's disease. 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.
After selling 700 books, without any advertising, other than by word of mouth, he decided to change the name of his book to – “Reverse Parkinson’s Disease” – because of the success his story has had with patients, who have read his book and taken the bold steps he has recommended, in order to change their life style.
Why not find out what those lifestyle changes are?
All of John’s recommendations are common-sense solutions to general health problems, and cannot do any harm to anyone, unless their doctors have advised them not to do any meaningful exercise.
If John’s recommendations are all common sense, then why don’t more doctors recommend that Parkinson's disease patients take his advice?
That is a good question!
Do any of John’s recommendations get used for the treatment of other health problems?
Yes! They do!
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!
Why don’t Neurologists routinely recommend these solutions to
their Parkinson's disease patients?
The only answer John can come up with, as a layman, is that only a Parkinson's disease patient knows what he/she is capable of doing.
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! He knows what is possible for a dedicated
‘Couch Potato’ like him to do!
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
any Parkinson's disease medication?
John’s Parkinson's disease is at the stage where medication is no longer needed, providing that he continues with his new lifestyle regimen.
Thank you for reading this story,
William Ainslie (John's Personal Trainer)
More about Sleep
My name is John Pepper. I was diagnosed with Parkinson’s disease in 1992.
Insomnia is a very common symptom of Parkinson’s disease. It has a very real affect on patient’s lives, which can prove to be very difficult to treat!
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. 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 found that when I cut out any daytime ‘dozing’ or ‘cat-napping’, my night time sleeping became a lot better. 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 did find that if I read a book, during the night, when I was unable to sleep, I often was able to go back to sleep again. I organised my bedside light to be positioned above my head, facing away from the other side of the double-bed. I did the same for my wife’s light. In that way, I did not disturb her, when I read during the night.
I found that walking also helps me to sleep better. Walking also helps in other ways with the progression of Pd.
Why not get a copy of my book, ‘Reverse Parkinson’s Disease!’, and see what other methods I used to overcome movement and other problems?