and on tues evening- oct 31st, i am to do a live in-depth interview for our local NBC affiliate.


To.: Mr Rush Limbaigjh::

It becomes glaringly apparent that you have no concept of what a diagnosisi of Parrkinson's Disease means. to a young person nor do you have a clue about how the medicines work. I have been diagnosed for over 16 years and have lived with this damn disease on my terms most of that time. I have became a PD activist; in part to help educate people like you about the symptoms, medications, probable causes, surgical options, and affect a Parkinson’s patient. Being an advocate means that no matter how much I hurt when I wake up in the morning, I an going to gulp down the ten )10 pills that are my breakfast and as soon as they kick in, I will slide out of my lift chair and crawl to the bathroom. There I will look in the mirror, surprised each morning that I am still myself not the haggered old gnome woman that I feel like,. Then I thank the Lord for giving me another day in which to carry out His jobs for me. I see my husband off to work and I see the kids off to school. Then I go in and turn on my computer and oh yes, if I even think about slaking off, the Lord doesn't mind giving me a swift kick in the ***.

The meds work some days and not others. This is why Parkinson’s Disease is so
hard to pin down with a easy, glib excuse. PD is called the ‘snowflake disease’ because no two cases are exactly the same. The symptoms are many & varied and they strike a person with no perceivable rhyme or reason. Now the meds are the same way. Two people who are very similar in age, length of diagnosis, weight and all other factor s similar, could take the same regiment of medications with exactly the opposite effects. As it is, our medications fluctuate day by day. We can never be sure when our meds will work and give us an “on’ period ( this could be a time that is practically symptom free and our Parkinson’s would not be obvious); but the medicine can just as easily go “off”
and you find yourself frozen or tremoring uncontrollably or diskenetic as Michael J. Fox was in the commercial to which you refer. Dyskinesia. is a side effects of his medication- a classic case of the cure being as bad as the disorder. Dyskinesia is the involuntary movement that can occur from levadopaa--which we take to replace the dopamine that our brains do manufacture anymore.. Dyskinesia can be caused by taking too much of the carbo/levodopa or it may be caused from taking it for so many years (I have been on this drug for over16 years) that it is no the powerful drugs that we must take each day. I’m afraid that you don’t longer as effective nor as long-lasting as it once had been or it may just be the body’s reaction to know enough about Parkinson’s Disease to make a call that Michael was acting..

I spend most of my time in a wheelchair and I could be a poster child for spousal abuse, I have so many bruises from falls and crashes. but almost every day-even if it is just a trip up to the grocery store , I make it a point to get dressed, put on makeup and go somewhere with my caregiver just to show people that PD is not a fun nor pretty disease. Sometimes I fall flat on my face in a store-sometimes I wet myself, often times I drool and shake. Little kids stare at me but I take the time to explain to them that it isn't a disease that you can catch like a cold. I tell them that it can happen to anyone so they must always listen to their own bodies and take care of that body. The grown-ups think they have me all figured out-drunk & disorderly at this hour of the morning! But I patiently tell them(as they wait behind me in a check out lane jumping up and down like one of those always-in-a-hurry folks that I used to be), while i fumble for my money that it is the same disease that Michael J. Fox, Muhammed Ali, the late Pope and thousands of others are diagnosed with each day. I tell them that if it could happen to me, then it can happen to them.

It seems as if you think that people with Parkinson's should take their affliction inside the house and become philodendrons just so as not to force you to see what PD really does to a person. You have a cohort in Ms. Andrea Lane Zinga. She said pretty much that handicapped people have no business getting in the way of motivated people such as herself. She was then running for the US Congresswoman from the 17th district from Illlinois against Lane Evans, to whom she lost after making stupid remarks like yours. This year she is back at it running against Phil Hare, a longtime aide to Lane and he shares the same values as Lane. I would like for you to come to visit me in Peoria, Illinois, where i live and go shopping with me for a day. It is always such an adventure

. I can assure you that Michael J. Fox would never stoop so low as to "act" like he has Parkinson’s. He doesn't have to fake those dreadful times when you feel yourself spinning out of control and all your meds quite working, It is a very scary place to be in. I applaud Michael J. Fox for having the courage to go on TV and to show people the true face of a person with Parkinson’s. I know that it took a lot strength and courage to do what he did for a cause that he believes in.
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If you cannot take time to come to Peoria so that I can make my point, then perhaps you'll visit my website at:
www.calipso-pd.org
and take a look at my video called; "Parkinson's Disease-It's a Life Sentence not a Death Sentence." You might just learn enough to realize that you owe Mr. Fox a huge apology for your inconsiderate and demeaning words. It might just cause a tiny bit of compassion to grow from that stone that is in your chest where your heart ought to be.

Sincerely,

Joan Blessington Snyder
Founder & President of CALIPSO
(Central Illinois Advocates of Lives Interrupted
by Parkinson’s Support Organization)