Thanks, Max.
Australia.


 

Dear Parky,

What an inspiration you are. I have a friend who was diagnosed with Parkinson's Syndrome--not a full blown case of Parkinson's. She immediately decided she would never do another thing; and, has not. She has absolutely no quality of life; refuses to participate in anything; refuses to be alone for one second; is spending her investments to hire women around the clock to simply sit with her. How sad it is that some simply do not have the courage to keep on keeping on! Do continue in all of your positive aspects of life. None of us was promised a rose garden when we get here on this planet! I, personally, have a condition that affects the connective tissues and affects my mobility. This started after the birth of my children. Hospitalized many times for the same symptoms which were never diagnosed until I was fifty-five years old, I continued to wonder what was wrong with me. I was a motivated, focused, directed person. Irregardless, and with the pain that this condition caused; even with the mobility changes it rendered, I continued on with my life. In 1984, I retired from teaching to assume the care of my husband's mother until she passed on in 1987; my father began to battle cancer in 1988 at eighty-seven years of age, and I became a respite until his death in 1989. In 1989, I started my own business called The Substitute Daughter and became a respite person for the senior primary care-givers of ancient parents; and, became a grief counselor as well. Due to the condition I have, I was forced to close my business in 1997; however, I began to put together little books of my writings which I had accumulated. Then, in 1999, I began to write children's books; The Golden Horse of Heaven; Honey Bunny; and Bouncer, The Littlest Reindeer. I published these locally, and proceeds from same are donated to Families in Crises/Child Abuse--an outreach of our local hospital. This just goes to show, that we do not have to give up; we just simple go on to another facet of life that allows us to do what we can for as long as we can for whom we can.

God Bless!

Maxine McWhorter Ungerbuehler

My sincerest appreciation to all my friends/authors for allowing me to share their "Never Give Up" attitudes with you.

                                                               "Parky"

10/30/01

I've had Multiple Sclerosis for a long time now. I was diagnosed in 1989 after having a bad neck ache, unsuccessfully treated with physical therapy and numb fingers and losing the ability to spell anything backwards.  Then after a number of years with no more than bad neck aches I started having really bad attacks and they were frequent too. Examples ranged from not being able to speak well to inner ear disturbances that left me throwing up. I am left handed and could not even write my name to sign my new teaching contract.  A wheelchair was prescribed and it just gave me numb hands after a few hours.  Then the doctor thought a motor driven scooter would work. But it was just too big and heavy to lift and I have a Nissan Sentra it wouldn't fit into.  I just was not ready for a wheelchair and a scooter was going the wrong direction in my opinion. Being rather hard headed I asked for a walker. That at least allowed me more maneuverability and had the added benefit of strengthening my legs. Now I can walk fairly well for short distances. Though I would guess that good observers would think I might be on drugs or drunk at times. My handwriting was never good and I had to work hard to even get a “B” from the nuns as a kid. Now it is worse and goes downhill with anything over a line or two. I've taken to printing and am very fortunate to have a computer because I can concentrate on what I want to write, leaving the legibility to a machine.

Betaseron helped lengthen the time between attacks and I was able to make gains in strength to where I wanted a different form of exercise. (I had purchased a treadmill with handrails and that helped to a point. But it was indoors and boring me.) I always used to ride a bicycle for pleasure and transportation. I thought of how I had enjoyed to ride and how I could still possibly ride again even though my balance was not very good any longer. I recalled a physical therapist saying that if I were to get an exercise bike I should try and get a recumbent one because it takes the strain off the back and shoulders. So I set out to look for such a thing. They were all way too expensive for me. Eventually I found a used Voyager for sale and knowing the company's good reputation I bought it. I wasn't sorry. Charles Penninger helped when it arrived in two boxes and I had trouble figuring out how to put it together. Now I never have to worry about falling. I take my small dog, Boo, in a basket that fits on the back and recently added a front basket when I had birdseed that put under Boo raised her too much. It is a super way to exercise. I can ride close to year round here in Albuquerque. The heat of our summers is the only thing that keeps me indoors. I may try and make a cooling vest with the kind of reusable ice packs my Betaseron is packaged in. I will let you know how that goes.

Now if they would just spend some money to construct more bike paths I’d be happy.
 
I also have to say that a good trike ride will solve my right leg, hip and buttock pains that even keep me awake at night that nothing else will touch not even antispasmodics or Neurontin.

I always have tried to find other ways to solve problems keeping my eye on prize and not giving up. Being a hard head helps.  My attitude is go for what you can get and you might be surprised at where you end up.

Jim is right about attitude.  My attitude is not always the best. But when it isn't I try and find something else to do and usually it works. I find trike riding is good for the soul and for the body.

                              Carolyn Meehan

From: Ellie
Date: 08 Aug 2002

Dear PD Friend: Thanks for the thoughts on attitude and INSPIRATION. They came just when I needed them. My prayers are with you. Ellie     

Dear Laurence;

Here I am again, even though I'd have to say you've heard my story before. But there is always another way to look at things, and life always has the capability to throw something a little different your way. So let me try to explain what's different this year.

My name is John Ball. I am 58 years old and have lived with Parkinson's disease for nearly thirty of those years. Although I always tried to stay fit, there were a few rough years between the start-up of symptoms in my late 20's and the diagnosis of PD at 39. Once diagnosed, the PD medications (primarily levodopa) allowed me to return to running on a regular basis, and I began competing in 5K and 10K races. At age 40 I ran my first 1/2 marathon in Long Beach, and did that once each year for several years. Then when my employer, American Honda, decided to sponsor the LA Marathon in 1996, I finally committed to running the "big one." I now have run the LA Marathon for seven years straight, and I cherish each of those personal victories.

My first couple of years at the marathon were basically just trying to see how far and how fast I could go, and I was proud to get a sub-four hour time on my second marathon. But the marathon provided something more for me than just the satisfaction of a good performance. It turned me into an advocate...an advocate and a spokesperson for those of us living with Parkinson's disease. In addition, I became connected with the community of doctors, caregivers and advocates who want to see an end to this disease. In 1999, my wife Edna and I helped Mary Yost launch Team Parkinson at the LA Marathon. and in early 2000, the Team was accepted as one of the LA Marathon's offficial charities. Later in 2000, my wife became chairperson for the event, and this year I have joined her as co-chair. Our efforts to raise money and awareness toward finding a cure for Parkinson's disease have been growing steadily over the three years of our participation in the LA Marathon. Each year, Team Parkinson has grown in the number of participants, and the amount of money we have raised. This year we will have more than 100 participants in LA XVIII, and our financial goal is to raise at least $125,000.

Because of your support, and the support of the entire LA Marathon committee, we have been able to expand the scope of Team Parkinson beyond our original concept. For example, Team Parkinson has been selected as the first Official Charity of the 2002 Western Hemisphere Marathon in Culver City, and runners from around the country are choosing to run for Team Parkinson in other events. Gabriel Zamora, a runner from Houston, Texas who's father has PD, raised $10,000 for Team Parkinson by running in this year's San Diego Rock and Roll Marathon. Others are planning to run for Team Parkinson in Boston and St. George, Utah. We know how important you have been to this success. You have helped us reach a larger audience each year through the news media, personal interviews and TV coverage. I certainly appreciate each opportunity I have had to share my personal story, because I believe that my participation in the marathon while living with Parkinson's can help motivate others to seek their own avenues for success.

Team Parkinson is not just about me, or Mary Yost, Florence Woolery, and Moses Remedios, each of whom live with PD and have completed the LA Marathon for Team Parkinson. It's about the efforts of a community to solve its own problems. Its about taking responsibility for the future. We want to find a cure for Parkinson's disease not just because we, or someone we love, has the disease. We are committed to finding a cure so that future generations will not be faced with the terrible fear of this incurable, degenerative neurological disease. We in Team Parkinson know that our ability to manage our daily lives is enhanced by the training and discipline that goes into preparation for the LA Marathon. It's hard work for someone with PD just to get up each day! So you can imagine what it feels like to get up knowing that you're going to be facing a 15 or 20 mile workout, knowing that your response to medications will vary throughout the run, knowing that you have to worry about everything everyone else worries about, plus the fear of getting caught out on the road when the medications suddenly stop working. But we do it anyway, because we know that the future depends on us. If we don't show the world we care, who will?

John Ball

Hi Jim

Many thanks for your letter. No I am not giving up, I just needed to feel a connection with you my inspirer.

There was a server problem with "ThrivingOnParkinson". It should be back now.

Jim I am so very impressed with all that you are achieving and I whole heatedly applaud all the recognition you are receiving.

I am also very very busy. A major book/CD package came out this month in which I am an invited author. The other authors are all world famous (you can read more about it in the section MY BOOKS on my Islamic art Site). I am writing a new book, which I hope will also be a TV series. I have been invited to give a lecture at an international conference in Budapest in August and I have several other major projects going. So life is full.

Going back to your Site, I would love an introduction to the other cyclist Linda and also John Ball. It all adds strength to know people who are thriving on Parkinson.

Sure, I will do an animation for your Site. I am in the middle of trying to meet a deadline, but as soon as it is over, I will do it.

If you like, you can add this to your feed back section.

"Until Roger Bannister ran a mile in less than 4 minutes, it was considered

an impossibility. But Bannister's record stood for only 32 days. Knowing that someone else has DONE IT, gives us the confidence and strength to do it ourselves.

I have lived a highly adventurous life, physically as well as intellectually and celebrated my 60th birthday by jogging all the way to the summit of the highest mountain in Wales (just over 3000 ft). Then just before my 61st birthday, my first Parkinson symptoms appeared and I was formally diagnosed with PD in June 1998.

The miserable image of PD that was first presented to me shattered me and the so called wonder drug Ropinirole nearly destroyed me. I determined to take charge of my own recovery, using my own exercise system, but knowing what Jim was achieving gave me the will and confidence.

Within a few months, I was climbing mountains again. I haven't beaten Parkinson but I am living life to the full. Cycling, swimming, dancing, exploring rain forests, writing books, lecturing at conferences, creating works of art and so on.

I say, "Thanks a million Jim" for flying the flag "I NEVER GIVE UP". If only more PD sufferers were to do a fraction of what you do, PD will soon loose its vicious teeth. Keep it up Jim and please keep inspiring us to live more.

" If I were a physician you had just diagnosed someone with PD, then the first thing I would prescribe is: GO TO JIM WETHERELL'S SITE AND GET THE RIGHT ATTITUDE. It is the most potent anti-oxidant that there is, and Jim will give to you a scak full completely free."

I also salute Linda and John Ball and Carolyn Meehan who have contributed to this page.

Jan Abas

Dr.S.J.Abas
School of Informatics
University of Wales, Bangor, UK LL57 1UT