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Topic Michael J Fox and PD Go to previous topic Go to next topic Go to higher level

By dkleinert On 2013.01.27 00:11
Does it bother any of you that Michael J Fox is such a notorious spokesperson for PD? I think he does the population with PD a disservice by being on TV, playing hockey, playing his instruments, etc. He makes it look like PD is just a walk in the park and that anyone with PD can continue on with their life as they have always known it, and no one will notice anything different. I have had several people, when I tell them my husband has PD, say - well at least if Michael J Fox is any example - be glad your husband has that and not cancer or something worse....or words to that affect. How can someone who really has PD for as long as he has said he has had it, be able to do so much and it not appear to really affect him much. We have known my husband had it for 8 years now, and he could no more come close to doing all Michael J Fox does than the man in the moon......what am I doing wrong that my husband can't do all the things Michael does? What drugs does he take that I don't know about that my husband could benefit from?

It just infuriates me that so many people see him as the face of PD, and don't think it is a "bad" disease at all to have. I recently saw a photo shoot that Michael and his wife did. They looked like any ordinary couple......PD aged my husband so dramatically in the last 8 years that people many, many times think I am his daughter!! They have said it to us in front of my husband and it is humiliating to him. Michael J Fox does not seem to age dramatically with his PD. He does not stand stooped as my PD husband does, he can even walk semi normally - not my PD husband. Even when my PD husband really tries when we are out in public, he walks shuffling......sorry if I seem bitter about this, but too many people have made light of my husband having PD because of the image they see of Michael J Fox, that I have heard it once too many times finally today.....I think even our adult kids and family members judge my husband based on what they see in Michael J Fox, and don't believe me when I tell them some of the struggles their Dad is going thru, and what I deal with also.

I don't expect I will have much positive response from any of you, 'cause so many people are grateful to Michael J Fox and his foundation...and they love seeing him on TV, etc. It is OK - I just had to vent here after being told yet again how thankful I should be that Joe has PD and not something so much "worse".....They said "Oh, you mean what Michael J Fox has? well, I know you must be thankful your husband has PD and not some bad disease" I just have heard it too many times!!!.

By LOHENGR1N On 2013.01.27 09:32
I hear you D! I never cared for the "Help" MJF gives the overall population of Parkinson's Patients. I remember when he underwent his operation and was on TV stating it gave him another 10 years at least to work!?!? (How'd that turn out Mike?) Maybe He's reading this or someone who knows him will? After that interview you cannot count the number of people who walked up to me (who knew I had Parkinson's disease) and asked why don't you have that operation MJF had, it cured him! What you say and what you do Mike affects our whole population of patients. I, like you, get by sometimes making flippant remarks about the disease no scratch that about OUR disease as we the patients are truly in this together. But You for whatever reason to sell your books or promote a project of yours come on TV make fun of it and millions of people view you as a saint buy your books, many trying to provide inspiration to their loved ones. Or just discount the suffering of a million patients. Yes a million! As you can see this is a touchy subject for me! Muhammad Ali? Where are you champ? We need you! We need you to help us make people understand Parkinson's Disease is serious! The suffering is serious! It's not a cake walk, a stroll in the park! Please Champ give Us a hand!

Mike? You talk the talk but you don't walk the walk! You go on TV and chuckle with celebrity Doctors and daytime hosts. You laugh and say vanity is the first thing to go with a disease like Parkinson's? (you even joke about body language saying my body language lies. (you so sure it is just your body language Mike?)Prove it Mike! Let's see you have a camera follow you around town (if you even go out then) on a bad day. Vanity? Sometime when you are really struggling to do even the simple things? I've seen you on TV and the host announced we're waiting for Michael's medicine to kick in so he can come out here and do our show. He'll be out in a few minutes. And then you announce vanity is the first thing to go? Come on Mike come out and show the whole disease why don't you? You Mike, until you do show the world the whole of our disease no matter how much funding is raised for the researchers to spend in their labs, You do a great disservice to all who suffer from PD and to all the caregivers/partners out here doing battle every day. Sorry about the rant folks it's a touchy subject with me.

By GladIhavehorses On 2013.01.27 10:45
Oh My Gosh Lo. You are so spot on with your comments. We are sitting here watching "Sunday Morning" program and a advertising comes on for his new show. We both commented about how people think PDers all should be like him. Even our doctor constantly refers back to him as a example ( again sugar coating the progression ). Yeah. Lets see him do a REALITY SHOW on his daily routine. And how about revealing just what meds he is on.

By jcoff012 On 2013.01.27 12:22
OK, Al...You are my hero, you know that...But, I see this in a different light...

Hollywood is full of pretty faces who spend millions on makeup, surgeries, etc. to remain beautiful. I applaud MJFox for using his celebrity to do more for this illness.

I think I mentioned before how our now oldest daughter reacted when I told her about Carl having PD..."Oh, Mom, it's no big deal. Look at MJFox, he's had it for years." Hurt to the bone...and, yet, the way he presents himself breeds that kind of thinking. On that point, I agree.

However...and it's funny you should be discussing this...Just yesterday, Carl said, "You know, I notice now when I see people with PD...by their walk or their eyes...always their eyes. MJF has the haunting look. He is putting up a good front, but anyone who has watched his decline can SEE it. He looks ten years+ older than he should. Sad."

On the reason we both respect him, we both see what he has done for Parkinson's and research...My MIL had PD long before MJFox and there was very little being done that was aggressive or new. Along came MJFox and things started changing...He put a face with the disease. He gave our family hope when we were facing a disease that very few people really discussed. We appreciated him talking to the media. BUT, we also were realistic...

As I told my daughter when she said that, "MJFox has the MONEY, the TIME, and the chance to make MORE MONEY than we will see in our lifetime; and can, therefore, always look and sound better than the average PWP. If he doesn't present well, they do "retakes" until he is...The reality is your Dad has the same disease, but will most likely suffer longer and be in pain more because we do not."

However...he puts his money where his mouth is...Right now, we just finished sending in our "spit" and 43 questionnaires for a Genome Project for PD that was funded in large part with the MJFox Foundation and the cofounder's wife of Google. Do you honestly think that this would have been possible without the front person, MJFox? I doubt it. Again, it gives us hope.

Like it or not, I am glad he stepped up to the plate. Maybe he isn't doing it in the way you think he should, but at least he is doing something! The vanity of Hollywood must be difficult to overcome.

One final note, do you recall the hubbub when MJFox appeared on tv without his meds...people who do not understand the disease said he was faking it...So, why shouldn't he do all he can to fundraise by appearing as "normal" as posssible? Americans do not face "reality" well, be honest. We want things sugar coated and pretty...PD isn't pretty. But, those with the money to put towards a cure WANT the pretty face...and he has it!

Don't want to be disrespectful, Al...You know how I feel about you and your insights...just disagree on this point...I want the cure and if MJFox can get it, I say hooray for him. I want it for you, Carl, Ben, and everyone...and I know you do, too...

Let's say we can agree to disagree... Love always, Jane

By jcoff012 On 2013.01.27 13:24
One thing I forgot to say...sorry... But, here goes...

I don't need to see the graphic details or pictures of my son's fight with testicular cancer to know it is horrific, nor do I need to see anyone suffer to prove a point. That's why I don't need to watch MJFox decline. No amount of money, no celebrity status is going to take away the inevitable. To watch his suffering does nothing to me, I hope he CAN manage well...for his sake and for his family.

It hurts to the core to go through this stupid disease, but we cannot change what others think or say. Sorry to say this, but I honestly figure most people are ignorant...and prove it by their stupid comments...BUT...

Don't you think they are scared? To me, their insensitive comments show they don't understand, but more, they are frightened that someday, it could be them...

By LOHENGR1N On 2013.01.27 16:23
Jane, As you say we can agree to disagree and that's fine. I'm not going to debate or argue as I said it's a touchy subject for Me. I lived with PD a few years before MJF was diagnosed and then came out public. It caused me problems but that's water under the bridge now (hard to forget but gone past). Within the last year PD has been put on the list of recognized fatal diseases. This is very important for research funding as fatal disease gets more than "nuisance" diseases as which PD was viewed. While on Larry King a few years back MJF was asked by Larry King if PD was fatal you can't die from it can you he asked....MJF's reply no it isn't fatal it won't kill you. ......ACKKKKK I'm doing it again going off on a rant! Sorry don't mean to!

On another personal note, I know many disagree about MJF and I and as I said that's okay. 10 to 15 years ago We had a support group that met in Williamstown Ma. (strange group we were all in our mid 40's and had PD for about 10 years) Shortly after our group formed a PD support group started up in Bennington Vt. less then a half hour ride away. The group in Vt was a more typical group of mid 60's to 70 year olds just diagnosed or a couple of years into diagnosis. They invited us up for a couple of meetings to garner knowledge and first hand what to expect now from Us "old timers". Where am I going with this? Right here....at one meeting they brought up MJF! If you didn't know MJF owns a farm in VT. A summer retreat and they claimed him as "their Son" how wonderful he was etc, etc. ............well .......just from my postings you know I couldn't keep my mouth shut.............remember the scene in Frankenstein? The one where the towns people have pitch forks and torches? It was almost a mob scene....if I didn't have my old service dog with me I think they would have grabbed me! A month or two later they invited Us up again they were going to tour assisted living homes in the area and asked if we'd like to go also?!?! I think it was a plot they hatched to try to lure me out on a secluded country road and do away with me! So no worries anyone when MJF comes up I know quite a few will disagree with me. And I'm safe in my home on the computer with my dog Tessa who's twice the size of my old dog Squire. One thing I will tell you and I hope you take me at my word it is very traumatic to have a group of pleasant senior citizens transform right before your eyes into a crazed lynch mob! Take care, best of luck and hang in there. (We're all in this together)

By jcoff012 On 2013.01.27 17:18
Lol, that's why I have the utmost respect for you, My Friend...tell it like it is...and know that I will, too...I fully understand your personal opinions and feelings...and, honestly, you know me I would have expressed my feelings at that meeting and adamantly, too! ;)

Please allow me to digress to show you the way our family feels about expressing our opinions...good or bad, we want only what helps in the fight against all of these chronic diseases...please read what our daughter posted to Facebook (and, yes, she is the one who was so heartless about Carl's dx)...this was in response to a friend posting how horrible Lance Armstrong was, etc....

A few years ago, my brother was dx with stage four testicular cancer. It was a rough time for him and for the rest of our family. He got through it and NEVER complained. At one point, his ex brought him Lance Armstrong's book. He read a chapter, then threw it aside. When I asked him why, he said, "He's a p---y!" I thought about that last night, as I watched the interview with Oprah and it made me happy. Happy my brother is still here. Happy that he is my brother. Happy he chose to fight this without fanfare or celeb. He simply went to work, never complaining, even though through chemotherapy he was confined to a wheelchair, but he needed to support his little family. He is just that awesome. What Lance Armstrong did was disgraceful to say the least. But, what he did for my brother's disease should not be forgotten. I wondered, watching the show, if my brother's treatment was better BECAUSE of the attention he brought through his own fight. Did the doctors advance treatment because of the money allocated from his foundation? Would my own brother be alive now if not for Lance Armstrong? I hope that the sponsors and average people understand that there are many of us who are grateful to him for bringing the main stream media into the fight, and we NEED their support...even if he is a p---y.

That is why I have said what I have said. Our family is grateful to ANYONE who can bring an end to any disease...at least, celebs need to do SOMETHING...

Not going to belabor this, either. Actually, I am interested in others' opinions, as well...we ARE all in this together and can learn from each other...Hugs, Jane

I DO hope that someday our daughter will understand this disease, for both of their sakes.

By dkleinert On 2013.01.30 00:25
Thanks so much for all of your comments.
Lohengren - You are indeed so special to me!!! We see it the same.....thank you for all you said. Now I don't feel like such a weirdo when it appears so many people love MJF. Yes- I wish Mohamed Ali were more visible.....Many HUGS dear friend!! I always learn so much from you. I also just want you to know that you have really changed me for the better after all you have posted on various posts lately. BIG HUGS!!!

By parkinit On 2013.01.30 02:57
I hear both sides... MJF doesn't represent the PDers who shuffle, fall, drool, are incontinent. I get that. He puts a "happy face" on and will continue to do this as long as he can, I get this about him, too. I also know, he has mentioned that he has to push his feet in his special shoes to straighten them out in the mornings. I recently saw him on television. His words were slurred and hard to understand. Yes, even with his looks that always seemed youthful, he is starting to age, like a "normal Parkinsonian."

However, because of his celebrity status, he is using that to rub shoulders with other celebrities who are willing to give money to further studies on PD and hopefully help find better meds, and, dare I say it, maybe even a cure some day.

I thank him for using his celebrity status to bring more money to the research table for PD.

By makrivah On 2013.01.30 20:52
Check out https://www.michaeljfox.org/foundation/news-detail.php?michael-fox-brings-slice-of-parkinson-life-to-television
Looks like MJF has a new TV show in the works. The headline reads:
"Michael J. Fox Brings a Slice of Parkinson's Life to Television"

It will be interesting to see just how he portrays a day in the life ...

I found out about this from a MJ Fox Foundation email blast.

By dkleinert On 2013.01.30 21:57
I get MJF's email blasts and posts on Facebook, also. I think his work to have a centralized place for people to register for clinical trials is good. We registered my husband, and have never heard about any trials. I hope it is helping somewhere. Yes he has used his celebrity to raise money for his foundation.....so far, nothing has surfaced from all the work his site says is being funded. Do you know of any direct results from the money spent on the research he has funded?

It will be indeed interesting to see how he shows PD in real life.....a true "reality show"? I doubt it....we will see.

By jcoff012 On 2013.01.30 22:59
Donna, (see, I looked at your profile ;)

Check out 23andme.com. It is partly funded though MJFox's foundation...Carl and I spent several long days this weekend to answer all 43 surveys and about 100 "quick"questions. If yo are a PWP it is sent to you free...a genome and DNA project with a focus on PD. interesting.

I would say that most research donations don't show results for years, if ever...We donate to Stand Up 2Cancer and have since it's inception, but still no cure, only research for cancer...same thing, I am sure. Hugs, Jane

By mylove On 2013.01.30 23:51
My spouse did the 23andme thing (the questionnaires and the DNA sampling). The results were pretty interesting, actually. It's a saliva sample, so not very invasive and pretty easy.

By dkleinert On 2013.01.31 17:46
Gonna' check out 23andme.com! Thanks for that!

By jcoff012 On 2013.01.31 18:05
Donna, make sure you register as someone with Parkinson's...it is free!

By karolinakitty On 2013.02.12 10:18
I haven't been on in a very long while but stopped over and this was the first post that caught my eye..so I thought I'd give my 2 cents..or my namesake anyway :)

MJF to me, has caused a diservice to the PD world. He has brought attention to the tremors and involuntary movements. he has brought attention to those dramatically to the tune of "well, you shake and move a little" known across the globe. I know across the globe from the many that i speak with regularly...MJF is raising money worldwide for his foundation and in the past almost 20years has brought nothing to the table. Not anything that poses a great treatment or a cure. An inhaled sinemet and possible hand stem cell prcedure.

What he has NOT done is focused on the pain and suffering on those who share his disease. He is a man worth a lot of money and can afford the best medical doctors in the world. While his counterparts in this disease can't even get treated by a neurologist. So many out there are being trreated by Primary doctors who haven't the slightest clue about the whole of PD. Heck not even a lot of Neuros do.

There are smaller quieter foundations that do 10x the amount of work with patients for research and clinical trials, but because he has the pretty boy face he gets all the attention and all the monies for research. If people broke away from his pretty boy face and really looked hard into who really helps in research they would see things better.

Our own National Institute of health, already paid for with your tax dollars has done more research in the last at least 5years, I know of, then MJF and his crew have done in 20. Parkinson's Disease Foundation(PDF) is another that has done research and truly cares for the patient and getting them to clinical trials. Yes politics is involved in all aspects of these research groups but at least some of them don't play as hard as MJF.

Now about 23andme...

We did the test for Jim turns out he didn't have the marker. However, after going to the NIH in Novemeber last year where Jim had another genetic test done....well...we learned from the nurse who took the test that 23andme does not do what is considered a full genetic marker profile. Yes, they do a test...but just like DNA tests, you can have one ina few weeks OR you can get a full DNA in 6months...quite a difference in the results...all the other possibilities of diseases and health issues are not solely based on true genetics but are based more on ethniticity and regional "health issues" on your ethnic background. Their genetics are mostly based on what "could" be in your bloodline than what is actually "In" your genes. They use markers from an ethnic base rather than from a medical base. That is why they get the results to you so quickly. FOr those of us who have done this...go back and really read the results...you will find that your "ethniticity" is a bigger factor than you realize.
we won't know the results from the NIH until May...and actually.. only if they find a genetic marker for PD. They know there are now 4 markers for PD and they only research those 4 particular markers rather than a whole slew of possibilities of anything else.....

By LOHENGR1N On 2013.02.12 15:31
KK, Good to see your posts again. While 23andme me does by the sounds of this post a broader across the board testing than the specific for PD test you refer to the NIH doing, Whomever told you, you get a full DNA testing from NIH miss-spoke. With the present technology it would take a few computers close to 10 years to run the full DNA of each individual. Good to see you on the forum again.

By karolinakitty On 2013.02.12 16:05
Sorry Al, guess i mislead... the NIH does a more in-dpeth genetic test than 23andme but only related to Parkinson's not all those other diseases.....it's not a DNA test at all...it is genetic markers that they look for...sorry :)

By jcoff012 On 2013.02.12 18:11
I guess as long as he is alive, the debate will continue about MJFox. Nothing will sway either side, but again, I still believe that he has, is, and will keep PD in front of mainstream media.

As I said before, I like him as a face for the disease...and I see no value in showing all of the realities of treatments, tremors, or other PD manifestations....I don't need to see how cancer has ravaged my son's body to understand his pain....he, not unlike MJFox, puts on a brave face and tries to remain positive, that helps him and the rest of us.

One thing no one has mentioned, but bears some thought...keeping up his appearance and living as "normal" a life as possible is paramount to HIS personal and professional lives...His way of supporting his family. Who would hire him if they felt he couldn't work? As always, who are we to ask ANYONE to go before the public with the masklike face, or stumbling, drooling? Would you, seriously, put your spouse/loved one in that position? Of course not. why should he, just to make you feel he is showing PD as it really is. Although if you have at all noticed, he leans against doorframes for balance, his facial expressions are strained, and there are times he speaks too quickly and his words are slurred.

As I said, I applaud him for bringing his celebrity, his time, and his passion to PD. How much easier would it have been for him to live out his life out of the public's eye and scrutiny. How many of us would do it? Very few, I think.

As I said, no reason to fight about it, just putting in my five cents' worth...

As for 23andme, we found it interesting. It was free for PD patients...so, why not? We didn't expect a full blown DNA survey and complex results...they are upfront about that. As Al says, a full blown testing would be much more complex...we looked at it as a way to participate in possible research, albeit limited.

Hope everyone has great weather. We are headed to the 70's tomorrow. Hugs and love, Jane

By lurkingforacure On 2013.02.12 18:21
I hope everyone realizes that 23andme will be using the patient data freely given by the participants for purposes other than many thought when they volunteered to participate. And by using, I think they are actually going to be getting $$$ for this data. Many people are very upset about this. I don't want to get into it, you can google it (just realized how ironic this is, one of google's founders is the husband of the founder of 23and me!) and what the ramifications of this might be.

By karolinakitty On 2013.02.12 18:24
I guess there are different factions of folks with PD....

Mine would go in front of everyone to show that pd isn't just about tremors and to educate those interested in the side effects of meds involved....would he embarass me or himself...absolutely not....it is what it is as a disease...

Many YOPD folks are very willing to show what this disease does and are looking for avenues to do this in..like the Neuro Film festival, the World Parkinson's conference and other venues.....

They support MJF and what he has done they just, we just, don't always agree on his position on certain matters..

Agree to disagree...the nature of this beast

By jcoff012 On 2013.02.12 18:39
Kk, if I may ask...we're yu just too busy or is there another reason you've been away? Was wondering the other day...hard to ask on these boards..never can anticipate the answer. Hugs.

By karolinakitty On 2013.02.12 19:04
I have been away simply because we started a new foundation for Parkinson's in October. I am the CFO and the cheapest(free) employee...lol

We are trying to get our foundation up and running and as some of you might know it is a challenge....

Our foundation is called PANDA or Parkinson's Assistance Network Directory & Alliance. We do not get involved in research or finding a cure...there are plenty of already well known groups for that. What we want to do is finacially aid the parkinson's patient, caregiver and family. There are only a few rarely known groups that do this and they only do it locally....we want to reach nationwide and eventually globally. Right now we have very little in funds as we still our in the process of getting our 501(c)3 and aren't eligible for but a few grants. We have done what's called "piggy-backing" another Parkinson's group here in the Carolinas, known as Parkinson's Association of the Carolinas or PAC. We are now able to collect tax deductible donations through them.
WE are having our first event on April 6th and are planning a South Carolina Parkinson's Conference in September. I also have been a part of several other events for NPF, PAN and PDF....

If ou want to check out what we are up to you can go to:
www.parkinsonpanda.org

We have guest bloggers there on the website and I try to keep things up to date daily as we also are heavily into awareness through social media....

That said....I have been one very busy little lady...but now that my guy is so much better...it is a becoming a little easier...except for our pocketbook.... I have now taken on an outside part-time job....we lost most of our savings during the 14 different meds a day for so long....Part D didn't pay for several of those and they were over $150/month for just one.....living on ones single disabitlity check isn't easy.....but...we are good at scrapping...lol

By jcoff012 On 2013.02.12 19:23
Kk, we should talk..seriously..I started my own nonprofit for literacy..took me a year, but I did it by going to the library and on the Internet...but without paying lawyers, etc...the paperwork is daunting...and the best advice..make SURE IRS is your best friend...their filings, restrictions, etc. MUST be followed to the letter. The state if CA requires yearly board meetings, so I had to get special permission to hold the meetings by phone and to log ours, as our board lived in England, Canada, and all over the US. Our online program was a huge success and I still count as friends authors like Judy Blume, RL Stine, Bruce Coville..it was an inordinate amount of work, but until we became a funding casualty of 911, we were in line for major funding from Verizon.

If you ever need nonprofit advice, let me know...I had to retire from all of my jobs because of a variety of family, and my own, health issues...that was before PD entered our lives (as you may remember my PWP's Mom had it for 22 years). Just an offer... Jane_coffey@comcast.net

By trapper On 2013.02.13 21:44
jcoff:

I agree with your comments on Michael J Fox !

He is trying to help us, dont you think ? What more can we ask ?

trapper.

By jcoff012 On 2013.02.13 22:04
Thank you, Trapper. As I said before, in life, I don't think anyone " owes" anyone else a thing. We all are responsible for our own lives. To expect someone to act or appear in the public arena because "we" need it, is unfair. Like I said, I give him, or ANY PWP who brings attention to our needs, a great deal of respect. Glad to meet you! Hugs and love to all, Jane


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