First and foremost I need to say that Michael J Fox has done a tremendous amount for us and PD. I am and always will be a fan and admirer of him his strength and courage. However in his new tv show I wonder what the effect will be on the perception of pwp. I'm sure it will be some what honest about life with PD, but there have been many times when I have mentionef I have PD and have heard," oh Michael J Fox has that, there are pills for that, it's not that bad."
The impression people have is that he's doing sp well it can't be all that bad, can it? I wonder how they will deal with the realities of this disease. Will they talk about the thi ngs of everyday life. The constpation, problems swallowing, sexual dysfunction. So many problems that no one one knows about, no one who doesn't live with this understands. At a time when funding from the government is getting harder to get is it the time to make our lives a sitcom? The more people think that it's ok there is a pill for that, thd less people will realize that this is terrible terrible disease.
I do believe you need a good sense of humour about life about what is happening to you, but I know in my life it 's not so easy. Will they talk about carrying a card that says I 'm not intoxicated, I have PD, the fact that I may need up to 30 pills a day to function, that all those things I once did with ease I will never do again. I really don't think so, and if not it will be a real disservice to the millions of pwp who can't be on tv, continuing with life, making a living, and making people laugh. I hope with all my heart he succeeds I do but
even more I hope he shows the realities of this life.
I really am eexcited to see his show, to see what he shows how he depicts pwp, if it is honest true to life, great if it shows, "no big deal we get along just fine, " I for one will be truly disappointed. Most of our us don't have the luxury of money and fame, the people on my support group don't that's for sure.
Just needed to say that.
y
der
Written by
olpilot
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I can certainly see where you are coming from, as a carer for my husband 18yrs of PD even I let alone my husband find it so frustrating at times when some people even our closest friends do not appear to understands the full impact this disease has on lives in a 24hr day. I too admire MJF and wish him well hopefully he will be able to portray the effects of living with PD and spread the awareness for a positve outcome.. Take care and thanks x
I share your admiration for MJF as a person, also share your concern over the way PWP will be porrtrayed in the new show. Most of us would probably agree that the situations, faced in the daily life of a PWP, do not contain much portrayable "situation comedy", except possibly to other Parkies.
I agree with that hard for some one who doesn't have it understand what this like. Most people wouldn't find much humour in a t-shirt that says "I pooped today", and really mean it.
That's a new one to me, I don't expect anyone to be enlightened or to understand every aspect of what is going on with this. My fear is that people will think ," Parkinson's, oh yeah MJF has that. He is doing great, he's on tv, it can't be all that bad." There is so much more to this than just movement, I don't see how it can be made something that people want brought into their homes for entertainment. Minimizing this thing to me is a great disservice to everyone who is suffering with it. There are so many parts of it that aren't understood, even by those of us living with it, how can they show that on tv, and make it something people want to see week in and week out, without minimizing the realities of it? I hope he can, but I also know that without understanding it, it will become MJF's disease, and it's no big deal, there's pills for that.
My wife got a support group going where we live and it has grown very fast, I don't see in any of our group a sitcom. I see people who have not left their homes for a long time to go out, who just need to be with people who are like them, who understand what life is like for them and their families. My hope is that their, our lives aren't minimized because there is so much that isn't funny. Like was said before, we can laugh at it, but how do you make constipation, incontinence, sexual disfunction, constant pain, amd so much more something people want to watch every week without miminimizing it. Me and my family live with it, as does everyone here, if it is real and informative great, if not it will be a great disservice.
The world may not know what PD does to us, because we barely understand what is going on with our bodies. PD is a disease that effects all of us differently.
As for me, I have had since 2001. I got lead poisoning from pumping leaded gas in the 60's and 70's. I am okay. I fight the PD with everything I got. I ask myself each day what can I do to improve my life. I can honestly say that I am better off today than I was a year ago. Except for those days when the pain was so severe, suicide was an option.
I do understand your concerns and others who post similar sentiments. I haven't seen MJ Fox's show so i have no way of knowing how he comes across but on the TV interviews i have seen i would never think life was easy for him or that he is doing well, he is so dyskinetic i find it is painful to watch. I feel sad when i read of your experience of people saying its not that bad, how can anyone say that after watching him beats me.
I am cautiously positive about the show, why? Because i appreciate anything that raises the profile of PD even if people don't get the whole story about PD's effects. After all i think it takes us ages to really understand the effects and we live with it. Parkinson's is the second most common neurological condition and yet it is still a hidden condition as far as i can see.
I have heard this discussion before, not related to MJF. No doubt it will continue. I wonder if we will ever find a way that will positively raise the profile of PD.
I was diagnosed in 2002, and have been a PD advocate for almost as long. Yes, I feel the pain, and deal with a lot as all of you do, but I also have done a broadcast/podcast and here is my take...from a pro people person with PD. Some of PWP are so selfish! Let MJF raise the money-that's okay. Oh, but if he has a bit of fun with it, now all of you are ready to step in and tell him he's gone too far! Did you ever think that maybe after 10-years of this disease, maybe he's done all he could. Maybe HE needs to laugh at it because he's tired? Maybe it could have a placebo effect on us all. Maybe instead of just sitting at home focused on just the PD, some might go smell the outside! After 5- years of doing over 250 programs, and over a total of approximately 40,000 downloads (which sounds like a lot) and very little support (thanks to those that did) I see where MJF is at. If nothing else, but in my eyes - he bought the right to do this sitcom. Maybe it will spread the word - this awareness plan now isn't working out. Oh, for those that said, "oh, what if everybody starts thinking it's not so bad, because the sitcom portrays it as???" First, wait to see the program. Second, I'm assuming those so worried about the perception must be those that might lose their daily dose of sympathy! Once again, how selfish of you! Heck, the public thinks that now! If you want the press that Breast Cancer gets, then start working together, and get on the phone and tell the corporate giants about the plight of our disease. Oh, last, but definitely NOT least...After all Michael has done for you people out there, after all he's done for all of us with PD...how dare you doubt him! Do you really think Michael will let those corporate sponsors get away and not continue to donate big money for research??? If that's what you feel, then in addition to selfish I'll add foolish! Keep waiting for Michael...he'll find a cure, yes Michael will find a cure. If I think at all like Michael, then I know, he's doing all this for the people he loves the most...his kids...and I've been an advocate because of my child. I don't want the children to have to suffer with this. This is all about our kids. You want more awareness, pick-up the phone and call your local media outlet when your feeling terrible. Invite them over to see your PD. Do your part, it's as easy as that! Quit crabbing & crying! I don't think we'll see a cure, but with a little luck...our children will. God Bless Michael! Save the children.
Never one did I say he shouldn't do this, I hope it is a great success. If I want sympathy I'll go fall down a flight of steps at the mall, or slam my fingers in a car door in a packed parking lot. I wont go out and get PD. What I was alluding to was the fact that PD is not very well understood and it someone is going to show it on tv maybe the lesser know parts should be there too. We don't all have the money to get the latest treatment, or drugs available. There are an awful lot of pwp who can't get the drugs they need to be able to function somewhat normally. I am lucky I have insurance, my drugs are cheap. I take azilect, I pay 15.00 per month, there are pwp I know who can't get it because without out insurance it costs 900.00 per month. 1500.00 per month for mirapex. I don't begrudge Michael for what he's doing I thank him for everything he has done, making people laugh is a great gift. Helping people understand what is happening to millions of people, what an opportunity. If people thinl that PD is no big deal, what is the need to find a cure, if people know what it is and what the toll is on both the pwp and the family, who knows.
Well before I was dx with PD I was a big fan of MJF, I had read his books, watched his interviews every chance I had. I admired his strength and courage in dealing with PD. The thing is most people only see the tremors, they don't know about the depression, the non motor symptoms, the pain and the everday efforts it takes for a lot of people just to get out of bed. Asking how some of these things may or may not be dealt with is not a criticism, nor is it asking for sympathy, it is a question. Like many in life it may not have an easy answer, but asking is not criticizing.
We have been actively doing our part, forming a support group when there was none, helping raise moneu donating time, energy, and what ever we can. I watched my grandfather suffer before ledopa was discovered. Get of your high and mighty self. I am one of those children 50 years in the making.
I really don't understand what my ego has to do with my comment. What "high horse?" How is it that my wife and I open up our lives and hearts, and share everything that has to our family for the world to hear...that's something to brag about? Doing a weekly program, and sharing our emotions on 250 programs, paid for by us, never a thought of making money, because we didn't - we spent it. So we speak at events spend hours upon hours motivating others, and telling them that it's okay to be angry about this disease, and maybe even feel sorry once in a while, but in order for people to really, truly understand - they have to get emotionally involved. Michael has done enough, now it's time for all of us to go public. I thought for the longest time, just how can we convey our plight, how can we show what it's like having this disease? Because, Brothers & Sisters, my in-laws, and my parents still don't get it. Why? Because I manage my meds extremely well. So, maybe the answer is unveiling our other side, that reality that few see. I thought, maybe go off my meds during a charitable event? No, that would be hell. Then, some of us were talking, brainstorming if you will, and a great idea came forth. Why not get as many PWP as we can at a national event like the PD walk in N.Y....but those that have had DBS. With Doctors present, and as long as it would be safe, what if, say ten, twenty, or more PWP and DBS shut them off for a brief time live on national TV? How powerful would that be? Just a thought. The secret of successfully spreading the word about PD, is telling others, that like us - it can happen to them without warning. It can happen to anyone. Just because they're laughing at Michael on a sitcom, don't think that won't stay with them. Once the chuckles are gone, all that's left is the ugliness of the disease, but with Michael, Ali, and a bunch of others not afraid to go public...we'll have them on our side. That's the secret though...getting that message into all the homes that will only let that message in, gift wrapped as a new, funny sitcom starring Michael J Fox. Did you see Michael on "Curb Your Enthusiasm" with Larry David, who was the genius behind "Seinfeld?" You laugh along with others at the clever way Michael makes fun of himself, and disease. This is what gave him the idea. It works! So rather than debate, if it's right or wrong...trust Michael to do the right thing. Get his message out through humor. Oh, if I wanted to stroke my ego, I sure as heck wouldn't do it via Parkinson's Disease and sharing the experiences of what it does to my family, like making me feel like less of a dad, because I can't take my son places because I don't drive anymore. Or watching my family go out to the movies because even though I try, sometimes the meds don't work...and after they leave, I'm left alone to ponder my fate. I wonder to myself...what will I do in the latter stages? Will I be able to handle it? Will I? Yep. I promised my son I would...and I never lie or make false promises to anyone - including my son. Even in pain! Now let me get on that high horse and ride off into the sunset, so we end this moment on a up note! Cheers!
You seem to have it in you to tell me to stop sniveling and suck it up basically and with out knowomg me to stop whining a nd do something that is your hig horse. I hav questioned anyone's integrity or their devotion to a cause. You brought up the very reasons I asked the question. Ma ybe you didn't see the many times I said I hope iy is a big success. You told me to get out their and do something , but you don't know me or what I've been doing which given that we live in a small town in so Wisconsin is as much as we can right now. Starting a support group helping to raise both .oney and awareness. I don't just blindly have faith in anyone to do the best thing for anyone . Wondering how this will be portrayed doesn't make me somekind of a angry ogre, or a none believer, it makes me curious.
We have all lost a great deal to PD , I had promises made to a grandson I can't fulfill,dreams of retiring on our sailboat with my wife, had to sell the boat. We both want the same thing here , you just seem to be angry that anyone would have the gal to ask a question that from what I've seen has been on several minds. He is not just portraying himself om that show, he is infact putting us all outhere. I'm not sure blind devotion is the only true answer. Worrying about what little dignity left is ok too. I'm living with it, I watched my grandfather before levadopa, I spend time witb the wondeeful folks in our group and the thing is we just care . I you take the time to readwitb out your preprogrammed anger you may see no one is question him , his integrity, or his ressoning. Just how he will, if he does show some, not all of the dark side. Giddy up.......8)
I can understand the curiosity of wanting to know how MJF will portray his life with PD on his new sitcom.. He carries a great deal of responsibility with him every day. HE is well aware of that.. It cant be easy to represent so many.people.. He has to be well versed in the latest medical information and yet.he isn;t a doctor. He was just like you and I before his diagnosis. He probably had never thought of PD.. Now he has to know the disease and be able to answer questions about itl... He can't look like he is begging, He can't look like a whiner,He can't sit there and be depressed., He must be strong and mostly upbeat yet still convey to anyone who will listen we need their help..
His is not an easy task. But I have watched him speak and I have seen a good deal of growth as he trudges on for our cause.. I truly believe if it wasn't for him, we would be very much more alone in this society with our PD.
So I have been able to reassure myself that he knows what he is doing and is very aware of "US".
I am certain that he wants to do a good job. He has already given us so much, that he could quit today and still have made a great impression on the minds of humanity.
I hope he does well with his show. I remember when he first started out he did not complain or talk bout the negative side of PD . He was on a blog and using a different name and he said one of the PD writers mentioned that they wished he would tell the people about the pain and the difficulties we face. He did just that on his next interview...
I have come to believe in him and appreciate him more every day.
I'd like to thank everybody for the input and again like I said in the beginning I am very excited about Michael J Fox's new show and I hope it's a great success
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