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Topic So what if my hands shake. (warning a rant!) Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2010.10.18 00:45
As unbelievable as that response sounds one of our forum members was hit with that when informing a co-worker a family member has Parkinson's Disease......That's no big deal, so what if His hands shake! All these years and still that's the response!?!? Who's to blame? The media? Celebrity? The Medical Profession? We all are! I'm just plain mad now! To all the newer members here, sorry when I'm mad I type, it helps me to just get it out before I blow a gasket and I'm in the mood for a rant.

That response is all our fault. The media for allowing hours to interview celebrity the luxury of taping around "bad" or "off" times. The media for allowing Doctors to state that genetic markers have been found in an Italian family as if it is the cutting edge news when all one has to do is type it into the search engine and this recent find dates back to 1996! at least. Celebrity for talking about adjusting their medicine according to what they have scheduled for the day, when they meet several times a week with a board of directors many of whom are top of the field Neurologists. Does anyone really think the disease and how are you doing doesn't come up? The Medical field for pushing medicines and procedures upon us while leading the public to think hey you can always have an operation and it'll just about cure you when in fact no long term data exists on those results which at best only mask the underlying progression of the disease. (I'm sorry if I'm offending anyone who has had this operation as any relief from tremor, gait and balance issues must be a blessing for you.) This masking allows other to be less uncomfortable when dealing with Us Parkinsonians. We fit in and our disease is hidden better. We'd better get vocal about these things folks or the misconceptions will continue. Getting mad? Good!

So what if our hands shake, so what if We fall over, so what if We drool. So what if several times a day our blood pressure plummets. So what if We can't see right, drive safely, hallucinate, can't regulate our body heat, control Our bowels. So what it doesn't involve them! So what if Our disease progresses to the point We can't remember Who you are or where We live? Unless something involves people who say so what, no big deal.

"You'll have that response" is kind of the general feeling of the mass public. Well I don't want to leave it as that! That response is an affront to all of us! Someone please tell me why it is accepted so often? Look at the numbers.......lets do some math at any given time over 1 million people in the U.S.A. are living with Parkinson's disease (that's just patients) most are married now it's 2 million living with it, add say an average of 2 children you have 4 million, say the children are grown and each have 2 children, add another 4 million, that's an average of 8 million people closely affected by or living with Parkinson's Disease. That's not counting in-laws. In time We the 1 million I started with will lose our voices and our fight with this disease but that still leaves 7 million or more to speak up. To say tell the truth to the drug companies, the researchers, the media and celebrity we don't want to be exploited, portrayed as NO BIG DEAL to sell ratings for shows or book sales. We don't have the opportunity of meeting weekly or even yearly with Professionals who'd never see us at their offices because of the insurance we have or because we lack the money to pay their fee's. Hell we don't even have anyone to help when the going gets really rough, why? Well why do you need help or a break? So what if our hands big deal.

By lurkingforacure On 2010.10.18 08:36
Al, I'm there with you and have my own soapbox on doctors who push drugs they either know don't really work that well but dont' tell you that, so you think something is wrong with you more than just PD, or they don't know really enough about the drug and all its wondrous side effects which is professionally inexcusable. I also have my own rant about big pharma and lack of financial incentive to find a cure, which I won't go into either. ALL of these things play into what you are talking about and yes, until it affects someone individually, they can distance themselves from it and believe it's "just shaking" so that they feel less guilty and can lead their life.

BUT, hopefully to make you feel a bit better, I do think this is changing. There was a world PD conference just weeks ago where a LOT of PWP were speakers and actively participating and I think finally, finally, the medical and research community is beginning to realize that the patient may actually have something to contribute, what a concept, and the patient is being invited to participate and listened to. I really believe that had this happened years ago, we'd be done with a cure by now.

The flipside of celebrities putting on a good PD face or whatever you want to call it is that it offers hope for those actually suffering with PD. It's a double edge sword, but in the long run, probably for the better, considering the alternative. I think when my husband sees Fox, who has had PD at least 20 years now, looking as good as he does, even though he knows he has a personal staff of the best neuros in the world, no financial worries, loving and supportive family, ALL the advantages, he still looks at him and says "wow, he's had PD so long and is still going pretty well...I can too". I hate to consider what my husband would think if every time Fox was in the news he was "off" and talking about how horrible PD was, or his books really told it like it is.

By mylove On 2010.10.18 09:36
Al, we love you dearly, and agree with much of what you're saying.

On the other side of the coin, I'm with lurking in that last paragraph. We do much the same thing that you describe MJF as doing - titrating according to what has to be done for the day. Most of the time it works. Sometimes it doesn't. Maybe we just aren't at the place yet (either us or him) that this won't work well. But so be it - we are all in the place we are, and it's none of our faults. I do see hope in seeing the meds still work for him. I see him still 'doing', and, as lurking says, I hope Shakydog sees the same thing and thinks "I can still try to go on too".

You're never going to change all the people all the time. It's a process of constant education, and yes: it does get difficult and seem pretty personal a lot of the time. But you'd be amazed at how people think when they don't have the facts to base their opinions on. I spend all day at work educating people on why it's so bad to dump oil in storm drains (maybe because it goes to the streams/lakes/rivers??), and they are always amazed. We still have to work at continuing to educate people that this isn't just a disease of shaking. They can understand, but not without our help. But I don't think trotting out the worst patient we can find to parade around is going to help the cause.

By caregivermary On 2010.10.18 14:54

I'm with you 100%. Very well stated and very true.

Based on where we are today and having been where MJF is today, I know that Parkinson's disease from beginning to end is not a disease with a lot of hope. You know we on this forum have been here before with this discussion and I believe in order for significant progress to be made the Parkinson's Disease story needs to be told differently than it is being told today.

Long term use of PD drugs causes a lot of problems in advanced Parkinson's and unfortunately, there isn't always a solution to the problem.

By karolinakitty On 2010.10.18 16:05
I'll jump on the band wagon here too...... 100%

Drug companies and all the rest have no heart.. they see dollar signs and that's about it.. let's gather money for research for what... As my guy says. Quit looking for why it happened and start figuring out how to get rid of it or make my comfort level one i can stand. Make me feel "normal" again and then maybe, just maybe i'll give to your cause.

They can have all their award dinners..oh by the way... anyone here get an invitation..a "free" invitation that is....

On one of our trips, we were in a social situation. This guy approached my guy and asked if perhaps he was in a motorcycle wreck. My guy siad no, i have Parkinsons. The gentlemen first said, well i see you don't shake too much. NO, my guy said. This man then proceeds to go into a long discertation of how he had arthritis, heart problems, and so on. Said he started wearing this charm, that took all his pain and medical problems away. How my guy too could be pain free and never have to deal with this disease. It only cost $200.00 for this thing you hang around your neck. It's made of lava rock and electrically charged to stimulate the electricity in your body and brain and bring it back to where it should be. He said it was like a mini generator.
At this point i was waiting for my guy to haul off and whack him, but he let him continue.
this "snake oil salesmen" then goes into how he sent one of these things to a famous football player to try for free and how this player is now in tip top shape and has no aches and pains and stuff..... so my guy says....well, let me try one for free and i'll let you know if it works. Ohhhh .. no can do.. Then my guy tells him a few choice words about taking advantage of sick people and how most struggle month to month just to get the drugs they need and so on....
This guy was stumped as we walked away.....
People with PD are seen as shakers .. maybe we revive the old religon to gain some attention.... just kidding... I get so frustrated and i just don't know where to put it. I have thought many times about writing, for local papers at least some things to know about PD. I am no medical professional so i am sure that wouldn't go. I do have an aquaintance with a local paper, maybe write him and see about doing a med special on PD. I just don't know where to start on reaching folks.

By LOHENGR1N On 2010.10.18 19:48
I know we've had this debate before I just had to vent. But you know I was thinking what if, just what if Michael J Fox shut down the foundation? .......I'm not saying close permanently, I'm just saying what if? We've all heard if the funding was there they could cure Parkinson's Disease in 5 or 10 years tops and that was 20 to 25 years ago. I'm reminded that in "lucky Man" (I was given a copy) He interviewed telling if one found themselves planning a 10th annual fund raising dinner to consider themselves fired. Well just shut down for a week's vacation just don't tell anyone but the board of directors. Leave the phones on a we're sorry no one can take your call at this time. Shut the website. Put a sign on the door Ten years have passed no cure out of business. Let CNN, ABC, CBS NBC and Fox wonder what happened. I know there would probably be so many legal ramifications you couldn't do that but.......Could you hear the outcry from labs expecting funding? Scientists outraged. You'd hear it all over the news, websites, blogs radio and TV, papers headlines screaming.

But not much is in the news of a million Parkinson's Patients awoke this morning again to no cure. Nothing said about researchers again today disappointing the 1,000,000 Parkinson's patients as they still aren't much closer to a cure for the disease. Oh it might be in the news as labs vie for funding, we get emails asking to write our congress to back this or that bill for funding, funny I haven't even received an email asking how are you today or how are you coping with your Parkinson's today. Just Please write your congressman/woman asking them to back such and such. You know I'm not really ranting here I'm just writing down thoughts. (I must have too much idle time today) One can imagine the news 10,000 or even more lab technicians lose jobs as funding dries up for Parkinson's research, no answers yet as offices cannot be reached. No headlines, no news of still no cure for Parkinson's today researchers still working on it, oh the irony, here in the real world you don't do your job you get fired. There in the Labs it seems if you don't do your job you should be entitled to at least as much or more money to not do your job again. And here We are, lucky to have Parkinson's mentioned in our obituary. Oh well, what if? Hey Michael, you out there? What if? Take care, best of luck and hang in there.

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