Fox FactorNot a big fan Micheal J Fox

[Captsteve]

I am sure I am going to catch hell for this but I need to get it out. I am not a big fan of the way Micheal J Fox goes around to all these talk shows without taking his meds and twitching around. Then I see him on tv HBO's Curb your Whatever or the red carpet not nearly as bad as he was on Regis and Kelly or anyone of the morning shows. Parkinson affects people very differently mine is stiffness it felts like, I was going paralyzed. I am kind of thankful because the dbs surgery worked well for me. Before that in order to walk I would have to take about 5 different med 5 to 6 times a day. or I be in a wheelchair. It would come out of the blue , I d feel my hands getting stiff then 5 minutes later I was done. Some mornings my med wouldn't kick in til the 2nd or 3rd dose but the Dyskinesia was coming on also due to the sinemet. So here I am at my social security hearing last year not moving and I am told it didn't look like Parkinson's,.Their own definition clearly states rigidity in two or more limbs. I blame this on the Fox Factor ill call it. Sure he done more than anyone has ever done for Parkinson's ever. Especially more than me, but I believe he also stereotyped us. to where if our symptoms are not the same as Micheal J Fox. Then we are not that bad or don't have Parkinson's I once heard him say in an interview he said, he doesn't take meds to see where it will take him,,,Mike ill let you know it takes you... to a wheel chair. Its not brain surgery or should I say rocket science So thanks to the Fox Factor I must go through yet another Christmas where my kids don't get crap. i am stuck in a one room apt. Girls dump you when they find out you have PD the sane ones any way. Mike please take your meds or do whatever you do before you do your tv shows for your interviews and lets show some of the advances what little there are with p/d. The public see you as our poster boy and if your never showing signs of improvement neither does pd...

[par004]

As we humans all know, no body is perfect, not my body nor Michael Fox.. He has almost single handedly raised the public awareness of PD, which far overshadows any negatives that he may be guilty of. ""let him who is without sin cast the first stone" Ain't going to be me. Your battle is with Social Security. Maybe if you asked Michael J fox might help you.

[Captsteve in reply to par004]

again no pic about me nothing.

well i didnt say he knew what he was doing or that would be a sin. i said he 's done more for parkinsons then anyone has ever before

i gave the man credit. and as far as him coming to help me ill fight my own battles

thanks for your comment

[simonsays]

10 minutes on tv does not show what MJF has to live with every day like the rest of us do. May I suggest that you read his books?

[Captsteve]

so your saying there has been no advancement in parkinsons

yes his life must be tuff as hell with all the doctor at his disposal. i really felt sorry for him when he was one show saying he was climbing mountains to see buddhist priest or something like that

Book sooks bblogs logs every one thinks they have a different story to tell. here is a book i got parkinsons i was scared as hell i was depressed. i started drinking i found god i hear there is a cure right coming, the end.

people right this stuff for there own therapy. what make his story any different then mine or yours.

thank you for your comment though

next time put a pic up and fill in the about me space

[Dianagers]

Hi, i only joined this site yesterday, so am new to it, but not new to PD.

having been diagnosed in january 2007.

what i am about to write is only my take on what capsteve has written.

PD, is unique , to each person that has been diagnosed with it.

I think if a person, like MJF, can use his status to raise public awareness,and raise funds for research ,then that can only be a plus.He is a very positive person, and gives inspiration to so many people.

Acceptance of a PD diagnosis, can be difficult, it is a loss, and like anything we loose in life, be it loss of a partner, a limb, or even a job, it causes many feelings and emotions to come out, and it can take sometime , before you can actually be positive ,and motivated , and live your life to the full.

So what i have read, is not about MJFox, but more about, Anger, resentment, and why me, all of which are negitive,, also blaming others is just another form of Denial.When you blame others , you give up the right to change .

Blaming keeps as stuck.

so my point is, the more awareness can be raised, the more funds for research, the more we communicate between one another, and realize we are so very different , and do it in a positive way, raise the awareness with your social security, by facts from other PD sufferers, Don't blame MjF. do something positive yourself, It will raise self esteem.

All the above, is my take on my diagnosis,, i like you said, but as i am english, the saying is,,,,I expect i will take some stick , for this.

[Captsteve in reply to Dianagers]

i never said i blamed him i said he caused us to be stereotype. my other comments just in response to those comments left. i gave him credit were its due but if someone is going to speak on my behalf lets see the who pic.

[JoelSchnoor]

My own take on this ... In the 12 years since my diagnosis, I've run into too many people who think that there are drugs out there that can cure PD. There's nothing of the sort. The drugs only treat the symptoms. MJF has single-handedly raised the awareness level and knowledge about PD, and his "appearing on TV while OFF" has been wonderful in letting people know what it's like to have to live with PD.

There's a HUGE difference between ON and OFF for me. When I'm on, I can run 3 miles. When I'm off, I can barely even walk without falling.

He's also done a ton to fund clinical trials. I'm participating in the CERE-120 trial (gene therapy -- I had brain surgery in March 2010) and that was ONLY possible due to the work of the Fox Foundation in funding further research.

So, kudos to MJF. Would that we could all have such a positive impact.

[Captsteve in reply to JoelSchnoor]

yes kudos to the foundations but if he never had Parkinson's would he care. for every touchdown scored there are 11 players on the field. well sorry you didn't like y blog but at least you but your picture up.

[shasha in reply to JoelSchnoor]

i agree with you about mjf - he is a great great person who has done so much for us

have not seen you on the site recently hope all is well ?

[Anemone]

You said it first, so wht didn't you stop before you struck out and did what sounded to me like blame MJF--a hero to many of us.

I'm sorry things aren't going well for you, or for so many of us. But things would be so much worse (I believe) without MJF's heightening awareness, being the first to say everyone's PD is different--and helping search for not just a bandaid, but a cure.

Lighten up on others and you'll find you will lighten your own load. Maybe you'll be out there being positive for the rest of us when we're feeling things couldn't get worse.

Take care of yourself, and be kind, ". . . for every one you meet is fighting a great battle."

[Captsteve in reply to Anemone]

i said he has done more for Pakinson's then anyone has in the ever done before including myself. really iam not that bad off i had parkinson for 12 years now and feeling like i was before. i just keep getting but in this box with Micheal. i have Parkinson's thankfully i been not as sever as Micheal's is. but you are correct i should lighten up a little

[Susie01]

Joel,

I have had the same experience, people who have actually said "take a pill and get over it'!

Like you, I have days that I can work in my yard (my therapy) for hours and be fine. Then I have days that the tremors and weakness is so bad that I cannot stand up without falling. A friend has now given me her deceased mother's walker to keep by my bed during the bad times.

I see the validity of both sides, on the one hand, people see the visual of MJFox without his meds, the visual is so disturbing that they do not get past it and think that is how folks with PD are all of the time. On the other hand, he has raised so much money for PD research. I am currently looking into what studies I would be eligible for and would want ot do. My DNA kit has arrived for the genetic testing, I have not opened it yet.

I think what even those with PD need to understand is that all of our symptoms are not the same. I spoke with one person who had never experienced the tremors, I have a small tremor even with medication. My handwritting is horrible since I have to grasp a pencil or pen, but I can type with the small tremors.

I have had a lot of optic nerve and inner ear involvement, which can cause visual hallucinations and overwhelming nausea and vomiting along with full body tremors. This has only happened once since I have been on meds, I would be scared to death do go off, not so much because of the tremor, but because of the visual hallucinations and severe nausea and vomiting. I letterally cannot turn my head from one side to the other without vomiting.

[Captsteve in reply to Susie01]

Thank you susie u hit the nail one the head

[Susie01]

Thank you, sometimes I feel a need to start a public awareness program in regards to PD. Probably the most hurtful thing with this disease has been the loss of a so called "friend" who declared that I did not have PD, that I was an alcoholic and was in denial and she never wanted to speak to me again.

In talking with others who have family members with PD they have similar stories. I live in the "Bible Belt", there are people who believe PD is caused by alcohol. I actually looked at research that said just the opposite, heavy drinkers have a lesser risk of PD, NOT a reason for frying your liver! But I understand how some of the symtoms can be looked at and think it is due to drinking.

[Lightning94]

Capt.Steve, Not trying to be mean or condescending, but evidently you have not faced the side effects of sinemet (carbadopa/levadopa)the way he and I do. Because what you see in Micheal is not the Parkinson's, but side effects of the medicine. You mentioned that you have had dyskinesia , but as you have also said everyone experiences this fun disease differently I know first hand, because the wiggles (dyskinesia) is the same thing I get at the top of my dose and usually by the evening. I did not have this until three years ago, when my dose of sinemet became quite large. However, everyone is different, so what might seem to be a large dose to one might be small to another. I was diagnosed in 2001 and about every 6 months I've had to either increase my dosage and/or decrease the interval between doses. Glad to hear the DBS has helped. Good luck with managing Mr. Parky.

[par004]

Susie01

I can relate to the comments about alcohol and PD. Last year I was in a fender bender with a car with 3 teenage (17 year old) girls in it.(The other car was eventually found at fault) My 15 year old grandson was a passenger with me. A cop showed up because the other driver called them. The cop grilled me but not the other driver. He ordered my grandson out of my car to answer his questions. I didn't pickup on what was happening until after my grandson got back in my car. Then I read the cop the riot act for doing a one-sided investigation based on age and disability discrimination, Bottom line was the teenagers and eventually the cop thought I had been drinking based on their interpretation of my "slurred speech". Afterwards I sent the following (full page) poster to the County Sheriff "WHATS THE DIFFERENCE BETWEEN BEING DRUNK AND HAVING PARKINSON'S DISEASE? HINT: ONE IS ILLEGAL AND VOLUNTARY, THE OTHER IS NOT! IT'S TIME YOU TAUGHT YOUR DEPUTIES THE DIFFERENCE

[PDdiagat40]

I have 2 pictures of Michael J in my office to keep me motivated. He is amazingly articulate for someone with 20 years since diagnosis. His youthful good looks and his quick laughter bely his willingness to take on this battle with a truly nasty adversary, PD. He has made PD his personal enemy and is fighting it with his youth, his humor and his unseen toughness. If I have a bad day I read part of MJ's book or go to his website for some inspiration.

[AmyLindy in reply to PDdiagat40]

Me too...

[DANIEL]

CAPTSTEVE, MY HUSBAND HAS THE SAME TYPE OF PD BECAUSE OF THE STIFFNESS IN STEAD OF MOVING ALL AROUND. IF HE TAKES TOO MUCH MEDICINE THEN HE'S ALL OVER THE PLACE. WHEN HE HAD TO STOP WORKING HE WAS NO WHERE NEAR AS BAD AS HE IS NOW. BUT THEIR (DISABILITY ) DOCTOR OK'D HIM TO QUIT WORK. WE THOUGHT HE'D BE DENIED, BUT THAT DIDN'T HAPPEN. IF THEIR DOCTORS DON'T KNOW HOW PD WORKS YOU MAY HAVE TO ASK THEM FOR THEIR DIPLOMAS. SORRY THINGS AREN'T WORKING OUT FOR YOU. JUST KEEP TRYING. YOU MAY HAVE TO GET LEGAL HELP WITH THIS.

[Joealt]

Michael J Fox is on our side.