I'm pretty disturbed over this MJF thing... - Cure Parkinson's

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I'm pretty disturbed over this MJF thing...

LJ123 profile image
46 Replies

I , for one, cannot even fathom a sitcom about this disease. I am the wife of a PWP and our lives are totally taken over by this disease..To find humor in anything about this disease is disturbing, at best, to me. I am enlightened by how

all of you are handling this. But, I believe in calling this what it is and that is unfair and totally unacceptable. I guess what this reminds me of is all the "brochures" we are reading in the doctor's offices that have people sharing good times and wonderful laughs with their families and loved ones on the cover. Our 6 beautiful grandchildren agitate their grandpa lately and he has not been able to smile for over 3 years. So someone please tell me how all this is going to be funny?

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LJ123 profile image
LJ123
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46 Replies
floppy1 profile image
floppy1

i totally agree with you on this one i mean whats funny about not being able to walk a couple of metres without your toes curling under and having to stand there in the middle of the street till they straighten themselves out "hilarious" or the shaking of the hand and arm which at times is uncontrrollable and can look quiet obcense "rib tickling" and what really gets my backup is the people that call it a gift from god well for me he can stuff his presents were the sun dont shine and dont get me started about being speciel or the chosen one!!!!

LJ123 profile image
LJ123 in reply to floppy1

Thanks for being a realist. We all want to laugh and be happy, but, I don't agree that this disease is a blessing in disguise....

Johnsilk profile image
Johnsilk

Lighten up everybody. Any publicity is good publicity as awareness of the condition is about as low as you can get. A great portion of the Western worlds population dont know about PD and thank G-d for people like MJF and Mohamed Ali who have at least stood up and been counted.

.

We can simply accept the fact we have PD or go into our shell or as MJF is doing talk about it and hope the publicity may make life a little easier for all

Hikoi profile image
Hikoi in reply to Johnsilk

Thanks John,

i hope the PD community doesnt become MJF's biggest critic over this. i have seen this happen to other people with Parkinsons who have been in the media.

Jocee profile image
Jocee in reply to Johnsilk

agree!

I am certainly not going to sit and brood in misery over whats been dealt out, I consider myself luckier than most people. Look at the people involved in wars, families dying, no security.

Besides , All those brochures are same anywhere, showing families smiling. That's advertising for you.

We can't afford to take life so seriously, it is hard enough to cope in life without an illness,

even more so without a sense of humour.

Jocee profile image
Jocee in reply to

I agree with you, oldtyke!!

shasha profile image
shasha in reply to Jocee

SO DO I

harding55 profile image
harding55 in reply to

Amen!

Jocee profile image
Jocee

I do not agree. If you don't want to watch it, that's your right. Laughter is the best medicine sometimes.

shasha profile image
shasha in reply to Jocee

AGREED

Whats that old saying ?

Laugh and the world laughs with you, cry and you cry alone.

Joanne_Joyce profile image
Joanne_Joyce

Wasn't there a recent post about a happy mood creating more dopamine in our brain? It true, we owe it to ourselves to laugh. Right?

LJ123 profile image
LJ123 in reply to Joanne_Joyce

Go ahead and laugh away. I find it difficult to laugh at this disease. I admire your attitude. Perhaps someday I will be there. The problem with more dopamine is wtih a PWP once it's gone it's gone.

gettome profile image
gettome

WHAT IS MJF?? . PLEASE DON'T ASSUME THAT WE ARE ALL AWARE . I AGREE WITH MOST OF THE COMMENTS AS LAUGHTER IS A GOOD THING.

GETTOME

Joanne_Joyce profile image
Joanne_Joyce in reply to gettome

If you google Michael J. Fox you will get his websites including his foundation.

Kat00 profile image
Kat00

gettome

MJF is short for Micheal J Fox..the American TV and Movie actor who has Parkinsons and has done much to raise money for research and has spoken out publicly about Parkinsons disease.

It must be a difficult for Micheal, having made his career as a comedic actor who has Parksinsons. If he tries to work in a comedy, he is seen as making light of his disease. If he tries to work in a serious film, (he must make his Parkisnons part of the story line since he can no longer hide it) he is seen as manipulative.

I can't imagine trying to "carry on" with this nasty disease and being judged for your every move. I truly believe that Micheal J Fox is doing the best he can to have a life, fight the disease and help to find a cure. His efforts may not always have the outcome he is striving for (a situation we all have experienced)

I am withholding my opinion until I actually see the show, but I am hoping for the best, (as I am sure MJF is), that the new show educates the public about what Parkinsons in a way that is helpful and still respectful of those who live with "Parky"

Pete-1 profile image
Pete-1

PD is far too important for it to be taken seriously.

If you attempt to stiffle humour regarding PD you let it fester out of conscious awareness. To allow humour means that PD may be talked about, brought out into full view. Humour oils the cogs of communication. Importance and humour are not mutually exclusive. So if I laugh at someones missfortune maybe even my own then that does not diminish the importance of PD it merely makes it more accessible.

The alternative is that your run the risk of appearing pompous.

Anyway its not the pain or the particular uncomfortable aspects of PD that may be funny but the circumstances that surround them.

I'm having difficulty expressing my meaning here, Is there anyone who has a similar view and who also has better words to explain my point ?

judam9 profile image
judam9 in reply to Pete-1

just enjoy life as much as possible. you will feel better.

olpilot profile image
olpilot

We are all trying to lead as normal a life as possible, somethings about this we can laugh at, somethins not so much. I hope it goes well for him, without taking away the realities of this, and trivializing what millions of families are living with day in and day out.

srarndt profile image
srarndt

Thank you all for sharing your point of views on the subject. Can anyone tell me, please, has his (MJF'S) new show even aired yet? If so, I would like to know the name of the show so I can search for it and watch it.

I'm not sure what type of creative control he will have over the show, but every interview of his that I've seen, his presentations in the United States congress, his replies to the idiot(s) who had accused him of faking his symptoms, his books, etc. have all seemed very good for the image that we have out there. We don't need sympathy, we need a cure. And if his taking the route of including PD as a thematic piece of a serial entertainment program gets us a smidgen closer to that cure, then i for one am very supportive of the idea - even before watching an episode or several.

Best wishes for all of us who could use an additional smile or two as we meet our day to day challenges!

Peace and love,

Steve

Bisbee, AZ

gettome profile image
gettome

To all of you above me in these comments. You have said it better than I did and thank you all.

gettome

PatV profile image
PatV

I'm looking forward to it. I think it'll be great. Did you see him as a pwp on Curb Your Enthusiasm? A scream. I can think of a dozen hilarious things as day, as a pwp, like when I served my granddaughter tea in a cup and saucer. Guess how much tea she got. MJF definitely does not just take a pill and is fine. Au contraire :D

LJ123 profile image
LJ123

As of yet the show is not named. From my understanding it is about a PWP who goes back to work after taking time off to deal with his Parkinson's. That might lead people to think it gets better?! I guess I just feel that making "fun" or " light" of this disease is inappropriate. I, in fact, have great respect for MJF and have organized and participated in numerous fundraisers for his foundation as well as the NPF. So, I will try to understand your views of laughing at and enjoying this show

MBAnderson profile image
MBAnderson in reply to LJ123

On one level humor is ha ha. On another level, it's a very effective form of communication.

Susie01 profile image
Susie01

A friend called me when he was recently on the show, "The Good Wife". I saw only a few minutes of Michael in it. I will have to say it is always scary for me to see people with advanced stages of PD because I know that unless we get better treatments I will in the same condition myself.

Maybe that is where many of the previous thoughts are coming from. When I was first diagnosed, a friend gave me his book, "Always Looking Up". I started reading it and had to stop because of what he dealt with just getting out of bed in the morning, never mind the rest of the day. After a few years, I am now reading it and can see how tirelessly he has campaigned for awareness, the fallout he took from ignorant asses like Rush Lindbaugh. I don't know where he gets the energy to do everything he does, constant fatigue is something I deal with.

I am probably somewhat biased, we are the same age and I have loved his comedy since he was on Family Ties. I even named my dog of 17 years after his character on that show. Never dreamed we would have this common tie of PD.

I do not believe he would consciously do anything that would harm the PD community, I think he is just trying to bring awareness in the medium he knows best, comedy.

Hikoi profile image
Hikoi in reply to Susie01

Susie

I just want to say please don't think you looking at your future when you see MJF. If i have worked it out right he was diagnosed at 30 while you were maybe 20 years older to start. That makes a huge difference as we know there are differences in younger compared to older onset. Also back then people knew less about medication than today and many took way more meds than we do. If I remember right from his book MJF had pills in his pocket to take just about whenever he felt the need. Sure the future will be a challenge but it is unlikely to be just like MJF. I wish you well.

Susie01 profile image
Susie01 in reply to Hikoi

Thank you Hikoi,

I was not that many years older when my symptoms became very apparent, just took them a while to diagnose me...I know that is the story with many younger onset PWP. I had bilateral tremors, freezing and great difficulty standing with out falling by the time I was diagnosed.

I have been fortunate that Azilect has worked fairly well at reducing tremors to this point. My neuro has prescribed requip and neupro but I do not want to use any more medication than I have to.

Yes, MJF was over medicated and they probably used the wrong medications to start out with. Also, I know meds that may work for one person do not for another.

Thanks again.

4809cats profile image
4809cats in reply to Susie01

Susie, please be careful if you do decide to take Requip, it truly turned me into Manic crazy woman. The warnings about the OCD personality changes......Had it and wore the t-shirt!! Just a thought-cindy

Susie01 profile image
Susie01 in reply to 4809cats

Thanks, my bottle of requip is still full. I just do not want to take more meds than I have to....I tried the neupro patch for a couple weeks but blood pressure was an issue and I stopped it,

gettome profile image
gettome

Im sorry to ask a question that many of you know, but is PWP. gettome

Pete-1 profile image
Pete-1 in reply to gettome

Person With Parkinson's Disease

Johnsilk profile image
Johnsilk

Having kicked up a storm may I suggest to all of you who are PWP(People With Parkinson's) who are wanting to do something to help yourself and your fellow patients think about attending the World Parkinsons Congress in Montreal in October.This will give you a chance to hear and be hared by the Doct6ors, Researchers and the Pharmaceutical companies as to your needs not their perception of them!

You might meet Tom Issac,Jon Sanford of this sites management team or-Jean Burns of the famous newsletter, the last edition is titled "P IS FOR PISS",or john Ball who ran so many Marathons to publicize PD that he wore his knees out or may be Ryan Tripp e PE teacher who has been described as Mister Canada when it coomes to awareness of PD ormany other fellow patients who are doing some thing positive about the welfare of us

jean-pdplan4life profile image
jean-pdplan4life in reply to Johnsilk

thank you John, Sheryl and I try to show the humor in living with Parkinson's disease. I hope others will visit our website and sign up to learn when we update the website. pdplan4life.com

And Sheryl and I are looking forward to meeting everyone at the WPC!

Hikoi profile image
Hikoi

gettome

it is shorthand for person(or people) with parkinsons.

So glad you keep asking these questions.

Bitbit profile image
Bitbit

MJf is my hero. How does he do it? I feel so crappy and scared and tired so much. I guess it helps to be rich and ave a supportive wife. But still, I am grateful and it helps a lot to laugh when you can.

Jash profile image
Jash

We can all use more humor in our lives-- preserve the seventh sense--humor!

morgaine53 profile image
morgaine53

I feel the show is in very poor taste to say the least! I have lost relationships with close friends and relatives, directly relatable to my PD. I get tired so easily , and everything must be planned around my PD "up periods", which are becoming less and "downtime" is becoming more.I am so tired of taking tablets that I could just scream - oh to have a day when I don't feel awful at least once, or a full nights sleep without aches, pains, and dystonia! I feel worse now than before I started on the tablets. I think it is an absolutely stupid idea for a show!

4809cats profile image
4809cats in reply to morgaine53

Hang in there Morgaine, I too have lost 75% of my friends, they just can't be bothered because of the fatique, I can't drink wine all day by the pool, so I'm the no fun girl. BUT you will soon find real friends that will help you and most likely understand because they have health problems!! The drugs, well, have you tried ginger tablets for the nausea?? Oh and the show, it'll never make it, unless you're watching McDreamy who wants to watch sick people. HANG IN THERE!-4809cats

LJ123 profile image
LJ123

I totally understand morgaine53. That has happened to us as well. I wish nothing but wonderful things to MJF and I applaud him for the wonderful work he is doing. I have supported his foundation many times over with PD Walks and other fundraisers. Our community has rallied and raised alot for PD....I am just saying, in my opinion, and this is just my opinion....This disease is not something one can call a blessing OR sitcom material.

lilao profile image
lilao in reply to LJ123

I totally agree with everything lj123 says .As a pwp living with it now for 12 years diagnosed at 39 had dbs last year. I do not know for the life of me why anyone would find a programme about a person with pd funny.I know it needs publicity but the publicity is at our expence and could send out the wrong message about the illness ie that it is not a serious illness. I Went though just about everything with pd and atlothough i do accept it i could never laugh at it but this is only my opinion.PS this is my first post I only joined last night

MGirardi profile image
MGirardi

If for one moment someone that is suffering from PD and suicidal had a glance at a real PD

patient (not only an actor) that could cause his heart to lift for an instant, the show would be worth it. And of course, if you oppose it do not watch it. I'm sure MJF, the PD patient, would NEVER intend to cause pain or offend anyone else with PD.

LJ123 profile image
LJ123

I get this, I'm just saying PD is just not sitcom material.

oldskool49 profile image
oldskool49

I give Michael credit for being as out spoken as he has been and at the front of helping to find a cure or at least something to help slow the progress. So I for 1 am waiting for his new show to air and then judge, Remember when he made guest shots on Boston Legal or rescue me?

cowmom27 profile image
cowmom27

ok----------having PD sucks BUT I think there are worse things--------I still have all my senses intact, wake every morning happy for a new day, making a new frie nd, enjoying the ones I have---mornings are my best, by the end of the day I am tired, I hurt all over--it would be so easy to throw in the towel and let the PD have its way. Its been 7 yrs since diagnosis and I still drive, babysit my grandkids, am president of our community or anization, belong to a book c lub, planning a trip to Switzerland to visit my daughter, and basically do all the cleaning, cooking, laundry, and driving for myself and S.O. who recently lost his vision----------if I didn't have a sense of humor I'd be in a rest home. I was a nurse for 46 yrs with almost half of that time in longterm care so I am not fooling myself about the stages of PD---------it is work to maintain a sense of humor but oh so worth it---is an inspiration.

in reply to cowmom27

Amen! pd sucks but there are definitely much worse things. I was almost (almost) relieved when my diagnosis was made after years of mis-diagnosing. At least it has a name and we can treat. I stay active; yoga 3-4 times a week and I am planning to walk a 5k this June and a 8k in the fall. I quilt and I string beads (you should see me string beads on a not-so-good day! I am nothing if not stubborn!) If you don't laugh, you most certainly will cry and I try not giving pd the satisfaction of crying about it.

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