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Topic Oh My G-d he's messing with the tables again Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2013.02.17 00:47
I turned the table last week and asked questions instead of My usual answering them. Got pretty lively for a bit. Another thread about PD and clebs had some good points also So I'm combining thoughts and questions about each and raising new questions. I asked about do we stress movement too much so that the other aspects of suffering with Parkinson's Disease aren't addressed. The other thread was about MJF and does He do service to or dis-service to the P.D. Cause. Okay if you're ready fasten your seatbelts and read on.
In the 1980's (My time of encountering "Mr Parkinson's Disease") We were told with funding we would have a cure in 5 to 10 years. After all Doctors knew more about Parkinson's Disease than any other disease of the brain. In the 90's same thing. 2000 to 2010 same, even on Oprah Dr. Oz with MJF as guest stated We're going to have a cure in less then 10 years you watch I'm sure of it. Today reading my copy of Neurology Now February/March 2013 issue (it came in the mail yesterday) the page from the editor tilted "Funding Research on Brain Disease" it states "The number of people with Parkinson's Disease is expected to double by 2030." Fifty years later! Fifty years of with funding we're going to see a cure in the next 10 years and the number of Parkinson's Disease Patients will be doubled? Doubled from when? Now? Or from what it was in the 1980's? It doesn't really matter! The field of Neurology is expecting it to double? Oh My G-D!

A little background for this next paragraph; Joan Samuelson (sp?) started P.A.N. (Parkinson's Action Network) to gain more funding for research for PD. At that time AIDS/HIV was getting over $1000 per patient in research funding while Parkinson's Disease was getting less than $35 per patient in research funding. When asked why She stated because they have Celebrities campaigning for funding.
You know what else they did? They put the ugliness of the disease and death out there in the public too. They didn't sugar coat it or just go out there when they were having a "on-time" or at their best. It's fine if you don't want to be seen at your worse but don't give a false idea that this is all it is either. I know it's hard to be out when the med's aren't working, damn hard not only from a physical aspect of exertion but a psychological aspect of being stared at, shied away from, whispered about, etc, etc. but it has to be "out there" to be taken seriously! Something has happened to me over these past years, I've been out there pushing myself when before I would have been staying home out of sight. (Maybe it is some internal clock ticking?) I'm a folksy kind of person anyway and blessed with the gift of gab but even so I'd shy away at "off times". But not lately, I'm in line at the cash register hand extended to the cashier so they can pick the change out of it for me. I've got a handle attached to a 150+ pound dog for balance. I've got Parkinson's Disease, the dog stabilizes me so I don't fall over or stagger all over like a drunken sailor. A Disease not contagious a disease, through no fault of my own, I just have it. At times it isn't pretty and it does interfere with every aspect of my life in one way or another. And it will kill me. But the majority of People don't know this. I do understand some trepidation patients have of being seen this way, I've been there but We have to get it out there to be seen not for more funding to prepare for a doubling of the disease to make sure we've got more drugs to treat it but for funding for a cure.

Some have posted they wouldn't want their loved ones out under scrutiny to be gawked at. I do understand that. But there is one of the problems. How do we get serious attention to finding a cure without Parkinson's Disease at it's worse being seen? It's uncomfortable, being the one seen. It's uncomfortable to see on TV. It's uncomfortable to be dying from it and it's uncomfortable to have to stand by and watch loved ones die from it too. And it's uncomfortable to live in a world where graphic suffering seems to be the "norm" to get funding or support for a cause. Again I don't know the answer to what more needs to be done to get attention to find a cure for Us? If anyone has some ideas I'd sure be glad to hear them because if things keep going the way they are it's going to become really crowded in this and other forums in the near future! These new to the disease better study and learn because there will be many hard questions asked and as it looks We who have been around awhile won't be here to answer it will be up to you!

I've got a whole lot of different emotions running through me right now so if I sound frank well I'm mad, disgusted, frustrated, sad for those to come, feeling helpless and kind of fed up with some foundations and org's. And to tell you the truth I also over these 27 some years of living with Parkinson's have looked forward to the day of hearing We've got a cure! Not to a day I'd see in print the expectation of the disease doubling in number of those stricken. But before they celebrate I'm still here and still kicking and fighting right down to the end so they better not think they're quite rid of me yet.
(insert Tarzan yell here) Take care, best of luck and hang in there. and here's a twist on one We're all in this together but it's really getting deep!

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils

By GladIhavehorses On 2013.02.17 10:12
You know Lo you keep on saying we are all in this together when in fact most of us are just bystanders watching our loved ones slowly slipping away. Once they are gone we are no longer in it are we. We caregivers really have no idea how our PWP really feels physically and mentally and emotionally. I feel alot of the time they don't let us know for one reason or another or can't.
I once posted that MF should do a reality show on how his everyday life really is. Poor chose of word. I should of said a Documentary. Not necessarily him. I have never seen any kind of Documentary on some one living with Parkinson's . When my hubby first got dx I had no idea what we were in for so of course I hit the internet. All I could find was a few short clips on You Tube here and there and nothing really about the so called JOURNEY that the books refer to. I don't call it gawking, as a retired teacher I call it learning! How is the rest of the world going to know what a PDer is going thru if someone doesn't show it. These are people that still have something to contribute to the world and we are loseing them to a disease that robs them of all dignity, hope and family life and the future for god sake. We should have tee shirts made up saying " No I am not drunk, I have Parkinson's Disease. Please give to helps us find cure for me and possibly someone in YOUR future."
No , I am not in it with you and my hubby. Thank God. I am just along for the ride in your journey That I wish we could make it cease before we get to our last stop. I am So sorry for you, my hubby and all those with this disease.We can only hope that one day NO ONE will ever have to endure this disease again.

By jcoff012 On 2013.02.17 11:25
Al, I understand your hurt and frustration. I have no solution. As you know, we watched and helped take care of my MIL over 22+ years with PD. Now, my PWP is my husband. His disease manifests differently, but it is still the same horrible disease.

I wish someone would find a cure, but seriously, I feel the same way about cancer. I wish there was a cure for a disease that has taken my grandmother, brother, aunt, brother, brother in law, and was suffered through by my Dad, myself, and my son, who is still fighting. That, in no way, negates ANYTHING you say...just a statement that there are a great many diseases that most often lead to suffering, too...and for which there is no cure.

As for PD, we agree to disagree about MJF, and that won't change. I have no concrete reason why I feel as I do; I just am glad someone is doing something.

I think maybe the biggest problem is not knowing HOW to spend the funding that is raised. I mean, in their quest to find a cure and money is raised, no one seems to know how or in what manner to spend the millions of's like throwing good money after a bad idea. I liken it to all the money that is spent on stupid movies like "Bridesmaids"...I mean, how can one compare that movie to "Gone With the Wind" and yet, it was nominated for an Academy Award...??? What a waste of money for a crude and crass movie...

...In the same way that money is spent on PD research...spend the money raised for curing the disease and offering a platform for open discussion. Don't hide those who are suffering. But, there again, I have a problem with that, too...Agree to disagree...I don't want to "see" the disease exploited; as I have said, I don't need to see the harsh realities...doesn't mean I don't want to be educated; I just don't need to watch the decline. Maybe it's because we know what is coming; therefore, my PWP and I don't need to publicize it.

Al, I DO know your frustration. Watching someone you love and care about, including you, My Friend, and knowing there is little or nothing we can do, is heartbreaking. We all want to find a cure. I just sincerely don't know HOW. Love you and hugs, Jane

By jaxrock On 2013.02.17 11:50
I'm trying my best to digest all of the important info in your post.....I'm going to read it over and over............I agree with all of it
I've tried to have my husband NOT stay home too much, to interact with friends at movie theaters, restaurants, shops, etc.
So, I've had to go into many men's rooms to assist him at awkward, and I'm sure, embarassing , moments. but it was necessary....who cares if someone stares??
We've had to leave events at odd times, too....if his panic attack hits, and walking around the venue doesn't help, we leave. No big deal.....and people seem to be very helpful if I merely say, It's Parkinsons.
I've had to help him eat at restaurants sometimes, and occasionally we get stares...but, again, he's out and about instead of being stuck at home.
Perhaps the day will come when he can't function in social situations...and I'm sure it will. but, until then, thanks to his meds, and the understanding of strangers and friends, I'm encouraging the "one foot in front of the other" attitude. I know it's hard...I know it's difficult....but, I just can't give up....(insert tears here.....................)
Thanks for sharing your thoughts on this very difficult condition.

By mylove On 2013.02.17 14:12
I have a problem with the 'who cares if everyone sees' thought. HE cares, that's who.

I have IBS. *I CARE* when I have to run from the table to the ladies room rather than sit with friends and family and enjoy a meal. I CARE when I have to use a public restroom, and know that everyone else knows I'm sick in there. I CARE that I have to come up with lame excuses not to participate in events that - inevitably - revolve around food, because my relationship with food is tenuous at best, and medications may or may not work, and let me down at the worst of times. I DON'T CARE to share my most embarrassing moments with everyone - friends, family, and coworkers, just because I have to deal with it. There's nothing worse than feeling as sick as a dog and having everyone all over you being solicitous, even if they mean well. I feel like it's my basic human right to have that one thing be mine, and private. I'm sorry - I don't want to be the 'face of IBS'. I have it, and that's that, but I'm living despite it.

My beloved husband knows, and he helps me all he can to 'cover' so that we can live a relatively normal life. I help him by 'covering' for him with his PD. Yes, our families know, but we take care to try to manage our conditions so that we can share the fun times, and retire privately to each other's company during the rough times.

I would never ask him to enter into a situation where he had to share the various indignities of his condition publicly if he wasn't comfortable with it. That's not fair. HE CARES if everyone sees. That's all that matters to me.

I'm sorry... that's the way it works for us, and that may not be the case for everyone. Good on the people who want to be activists... we just want to get through this and live as normally as we can. I just want to say that maybe we need to agree with our spouses how much exposure they're comfortable with, and respect that. After all, it's not like if we stand them up on a stage in full blown off position that a 'cure' is going to poof miraculously out of thin air and it's all going to go away.

"Awareness" is nothing. I've yet to meet someone who isn't 'aware' that Parkinson's exists. I'm not going to sate their curiosity about what it looks like at it's worst.

By jcoff012 On 2013.02.17 14:49
Hear, hear, Michelle! I do agree. Carl is a very private person. It is all I can do to get him to go to the monthly PD meetings. We still go out, travel, etc., but we are early on here...we know that. We don't hide, but I see his pain at times, when others notice the changes in his gait, posture, and the increased tremors. He tends to visit places who knew him and know of his decline, but who are understanding and still treat him normally.

Here's how I know being someone used as an example would be a setback for him personally. We were in a restaurant a few months ago, when I had to use the restroom. When I got back to the table, he was visibly shaken, and not PD tremors...I said, "What happened?" He said, "The waitress, in not a quiet voice, said, "SIR, you are shaking, you must be cold. Do you want to move?" Then, to his dismay, without waiting for an answer, she asked a co-worker to come move our things. He was mortified, as the restaurant was crowded and there really was nowhere else to go. He told her, "Please, I am fine. I have PD." She said, "NEVERMIND, Lorraine, he has Parkinson's; he's not cold." This was in a NICE restaurant, just an inconsiderate, uneducated YOUNG waitress...We stayed, but I know he was anxious to leave.

There are some who like to be the center of a cause. I want to help, but I agree with Michelle, that decision is personal, and I would not expect my normally quiet, reserved husband to become an activist. He never was, never will be. He is supportive of the causes in which he believes, but I cannot imagine subjecting him to any embarrassment that this PD brings on.
Hugs and love, Jane

By LOHENGR1N On 2013.02.17 15:27
I'm sorry if I sounded like I want to push everyone into activism or out in the public spotlight. That wasn't my intention. It is an extremely person choice and never would I force that choice upon anyone. Just tossing the thought out there to get ideas on how some feel about it. That's all, there are no easy answers nor any easy questions. And Yes every terminal disease is horrid and we don't need to be pounded endlessly with the effects, however I've not heard other terminal illnesses referred to as a chronic condition as Parkinson's Disease often is.

Again I sorry if I offended. I think I'll just go back to answering questions instead of asking them. I think We all Patients and Caregivers/Partners have many fears and feelings that we push back, try not to think about and are painful when touched upon or brought up. Take care, best of luck and hang in there.

Doc Holliday: What did you ever want? Wyatt Earp: Just to live a normal life. Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By jcoff012 On 2013.02.17 15:48
I will let others weigh in, but first, and foremost, Al, your insights are invaluable and needed! Please, never think you offend anyone. I, for one, LIKE open discussions. YOU have every right to say how you feel and ask ANY questions you want...heavens, you listen to us! Don't go away from this is one should be offended by open discussion which is not directed at anyone! Onward and upward, and fight on! Love, Jane

By mylove On 2013.02.17 16:13
I wasn't upset at you, Al... I guess I'm just tired of dealing with both our issues, and it's tough enough having the problems without having everyone out there second-guess you. Sometimes I feel like we're caught between trying to feel normal, and having people think we're trying to 'scam the system' because he's on disability and they can't see the problem; and feeling ashamed because you have to defend your case by showing everyone the seedy underbelly of the reality of the disease. Neither option is particularly humanizing. I guess that's what it's all about, right?

I also have gotten spanked a few times from other friends who are more activist and in-your-grill about it, who feel like we just aren't serious enough about the 'cause'. We all deal with it in our own way, and I would hate for someone to push it on someone else that they have to get out there and 'show the disease' or they are somehow not doing their part.

I had to help Ben out of his bench seat at a fancy restaurant on our honeymoon dinner last week, because booth seats tend to be too cushy and we sat a long time. He had to endure the stares of the couple across the aisle. And this was a nice place. Sometimes I wish people would just mind their own business - we're not a car wreck and someday they'll be hoping someone else gives them the same courtesy.

By dans316 On 2013.02.17 16:36
It doesn't seem all that long ago that Jerry Lewis was being criticized for having people with MD on the Telethon. He had one advantage in that he could have young kids with MD on the show and play for sympathy. I'm not sure if that was right or wrong, but it sure seemed to help him raise money. BTW, even with all the money raised they still don't have a cure for MD.

I too would not want to subject my wife to any embarrassment and I try to make sure she is dressed nicely when we go out. I'm not sure, but I think there seems to be a difference in how PD affects a woman at least per some of the accounts I've read here.

By jcoff012 On 2013.02.17 18:16
Dans, my PWP is my husband, but his Mom had it for over 22 years. At times, we are watching the progression of my husband's disease through her eyes.

I think you may be right; women seem to be affected in different ways. My MIL was very concerned about her appearance, even to the end. My husband is anal retentive, but he always has been; even to the point of being OCD!

But, he lies on the floor, sleeps in a recliner, and doesn't mind getting dirty while he works around the house...She was really OCD and had to have her clothes just so, wore not only a Depends, but insisted on wearing another feminine pad at the same time. My husband allows the family to see him during some hard times; she would go to another room, not wanting to have anyone stare. He doesn't mind going out in public, she became a recluse early on. She was quick tempered and belligerent when questioned; he is still sweet, most of the time. (However, until PD, she was NOT ill tempered, ever...meds, I guess.)

So, we do see subtle differences. She also did not fight the disease, while my husband does...she took an abundance of meds from the beginning; he refuses, for now...I am not sure if these differences are feminine or masculine ones, but they are real.

Wishing you well, Jane

By Reflection On 2013.02.17 19:16
Dear Al - don't you dare disappear on us. We need you, and we need your questions. Very thought provoking.
In no particular order:
One way breast cancer has gotten funding is to emphasize the "life time" risk:
"Based on current breast cancer incidence rates, experts estimate that about one out of every eight women born today will be diagnosed with breast cancer at some time during her life.
The strongest risk factor for breast cancer is age. A woman’s risk of developing this disease increases as she gets older."
Um - sound familiar? Can anyone rattle off the lifetime risk of developing PD? Given our aging population - given that it's more common the older you get - I think it's going up. Way up.
Example - I now know my father had PD - though he was never diagnosed. His leg dragged - classic. He was never diagnosed, and I seriously doubt it ever occurred to him, or his doctors, or anyone that he had PD, and he died of a massive heart attack when he was 75. But - if he had survived that heart attack (and I believe more folks with family heart disease are now living, longer, because of improvements in treatments) - he would have developed PD, I'm sure of it.
The search for biomarkers for PD is critical for research - for seeing whether treatments work to halt the neurodegeneration. But I"d submit it's also critical for getting more folks personally invested in finding better treatments/ways to halt the degeneration/ways perhaps to regenerate some lost neurons.
If, eg, you had constipation, a poor sense of smell, restless leg syndrome etc. - if you realized this put you at high risk of developing PD, wouldn't you be more committed to PD research?
Serge Brin puts a lot of money into PD research, in part because he knows he's a risk, genetically.
I'm actually a huge fan of Michael J Fox, because I think his foundation has been exceptionally intelligent in how it has used the money it has raised.
One symptom of PD is apathy. As many here have mentioned, those who have PD can also withdraw, or be embarrassed to appear publicly. So - it may help to enlist a broader range of supporters - not just those who have PD now, and their families, but also those at risk of developing it. Putting out the word about early signs could help.

By karolinakitty On 2013.02.21 21:23
Wow...all good points...but I am with AL..but then I am an activist.....and I will continue on after my loved one has passed...but what if I pass first? well I'll figure that out later...

I am the mouth of the south...I want ...My Jim wants....for people to see the reality of this disease...

Does he want a movie camera on him when he doesn't make it from the van inside the house to the bathroom? Hell no...but he wants people to know these "accidents" occur and it's not because of prostrate or Low T....who the heck ever heard of Low T before 2005?????? He wants them to understand that the receptors go to the sphincter also..sometimes it works...sometimes it doesn't

It's activism and advocacy that the word gets spread... Not all are cut out for this....but there is a movement and in Particular YOPD folks ages 23 to 55 who really really want the word out there...they are tired of the stares and looks as if they were crack addicts and meth heads who can't make it to the next fix!!!! Cause guess what??? it looks the same in others eyes....did you know sinemet can ruin your teeth like a crackhead/ methhead?
you have tremors...your eyes can be half closed like you are spaced out....yeah it sucks to have PD @ 23 when it is only considered an old age disease...and be associated with a crack head...

There are those who put it out there on youtube..Jim his ugliest with his eyes almost closed, swollen legs to the size of elephant legs...BUT...he also has newer ones post requip...the equal to the point of..DO you really have PD? in strangers eyes...

Stubborn as a gator on swamp people he fights to get it known....but then that's him...that's me....and may be me too....over the last year, I am showing signs of the demon myself... is it accident God put the two of us together??? I don't know....I did a small trial playing with some drugs since I don't have insurance, nor an income...He has some 10/100 sinemet....I used those...over a period and my symtoms I have it...tremors aren't prevalent, inside tremors ... so going to any neuro would get me no results at this time would be futile...I won't take requip, mirapex nor azilect...I've seen too much to take those I have to wait this out in years probably and fight like a fool until I do get a tremor...or win the lottery so I can see a movement specialist..and since we don't play the lottery...I'll fight until I know for sure

my biggest goal as an activist/advocate is to get the medical professionals to understand this isn't my fathers Parkinson's as Bev's video is named....It is not all about tremors and's about quality of life and how and what we can do to make it better...they(medical community) can make it better by listening more to the patient...

Educating the public is my second goal....I want people to know that just because the doc says "take this" it's not always the best choice...EDUCATE yourself about the disease...

Get past those stages of grief and move on to LIFE

Our activism not only goes towards the bigger foundations...we are involved in one way or another with NPF, PDF and PAN...the others not, but having a foundation of our own, that actually can aide the individual...yep... I want it... bring it on....I am ready for the challenge...

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