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Topic should this be a matter of concern? Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2017.06.08 21:25
I've noticed on the boards a seeming trend. And please don't take this as any individual criticism because I am not singling out anyone. But I think I should maybe say something about it, many compulsive actions are caused by agonists (sp). some may be induced by other causes even the disease perhaps. I think if continued might cause confusion and the stigmatizing of We patients. We have had discussions past about being in public and people reacting towards Us as if We were drunks even remarking about the drunk (patient) should be ashamed or not go in public drunk. Many patients do not have compulsions for porn or sex or gambling but many do either from drug side-effects (the majority) or other causes. When we state it is because of their Parkinson's mind it treads toward stigmatizing that it is the mind and hence the disease that causes this. Which can and will in some peoples mind conclude it is part of the disease and in so doing it may lead to people saying and believing sooner or later Parkinson's Disease makes us all degenerates and sex fiends. The public can visit and read our posts so disinformation can quickly spread. Stating we know it is the patients P.D. mind is not accurate. And the main culprit agnosists (which have many cases due to them which correct when medically withdrawn from this class of medication) it would be closer to say in their meripix mind or artane mind. I don't want to be nitpicking but I don't want another battle trying to un-stigmatize the Parkinson's community either I hope no one takes this personal as it is not my intention.

addendum; just reading the fox foundation's spring/summer 2017, Impulse Control Disorders, they most often develop after a dopamine agonist is started or increased. While estimates vary, it is believed that fewer than 10 percent of people with Parkinson's disease (PD) experience ICD's but these disorders are likely under reported.

By mylove On 2017.06.09 08:42
With all respect and kindness, you asked if this should be of concern.

My honest take is no. No matter what the reason for the symptom, this board needs to remain an honest place to discuss everything related to PD. The purpose of it is as a place for caregivers to come together and share experiences and support, not as a teaching site for the public. It is a public site, yes - but if we start to censor content based on outside perception it loses value to the folks who need it the most.

This place holds the good, the bad, and the ugly. I vote to keep 'airing the dirty laundry' here, so we can help folks get the help they need. And keep sharing that help, everyone. For some, it's the thread that keeps them going. Hugs.

By LOHENGR1N On 2017.06.09 09:17
you're right, the board needs to remain an honest place to discuss everything related to P.D. but it is and always been a teaching place along with that. When statements are made like I know it is P.D.? My concern was that is giving skewed information. This site has always helped and corrected and shared info on a plethora of topics and should do so. It's not dirty laundry it's life for us here. We've always called a spade a spade here and will I hope continue to do so.

By pinki53 On 2017.06.10 16:53
While I understand what you mean, to those of us as caregivers, everything that happens with our PWP is PD. If it is caused by the meds or if it's a known symptom of PD or whatever, it's still PD for us as we deal with this on a daily basis.
Sure there will be people who may read this and not fully understand. But that can happen in many places
This makes me think of the hundreds of memes or "news stories" that fly around social media that are false. I want to scream when someone "shares" something when they could easily have done a bit of research to see if it was true first. I hate it.
But I hate PD more than anything.

By LOHENGR1N On 2017.06.10 23:13
pink, I hear you and being a PWP myself I don't want people who know little about the disease reading Parkinson's thinking or saying as part of the disease we have ICD's and will grab Women's butt or act inappropriately in public. As I mentioned above about a thread we had awhile ago on people thinking we PWP were drunk. Years ago I was walking down the street and a State police officer drove past me 4 times before stopping to see if I was publicly intoxicated. Upon telling him I had Parkinson's Disease he apologized and drove away. So stuff happens.

By Checkmate On 2017.06.11 09:36
Ok so I have been debating whether I should respond to this concern but now I feel compelled to. With all due respect this is a 'caregivers ' site and we at all times try to protect our PWP from judgements in fact that is why we post here because the general public do not understand and the only people we can speak openly with is other caregivers who live with parkinson's. We cannot censor nor should we have in the event that the general public may read our posts. Otherwise we might as well close down the caregivers site. I have been startled with some of the labels being used as examples in this thread. If this continues I for one do not feel comfortable or secure in posting. This is very unfortunate as it is these honest postings that help caregivers carry on and give them the strength to help their PWP.

By pinki53 On 2017.06.11 10:06
We get out and about almost daily. We use a wheelchair for anything more than just a few steps.
If one of us tells someone we are talking to that he has PD, does that mean the public will think all PWP will use a wheelchair?
When he spills food or drips soup between his bowl and his mouth does that mean to the public that all PWP are messy eaters?
When he misses the toilet in a public restroom does that mean to the public that all PWP do this? (and yes, we were told in one small consignment store that he was no longer welcome to use their restroom - we haven't been back). Or when the front of his jeans are soaked and he smells of urine that all PWP are incontinent? (He's not really incontinent, he just can't get to the toilet in time or control the direction).

My point is that we can not control what the uninformed public thinks about the disease.

If they read ALL of the posts in the thread, they will see that not all PWP have sexual issues.
But we can't make sure everyone reads everything.
I guess we could have a blanket statement that we preface every post with that says something to the effect that "when you've seen one PWP, you've seen only one PWP."

By pinki53 On 2017.06.11 10:28
Checkmate,
I came here looking for a place to be completely open and honest about concerns and questions and yes, sometimes just to vent because I'm going crazy. And for some reason, venting helps.
I have a group of on-line women friends where I can vent but none of them deal with a PWP.
From the beginning I have worried that I will say something that will offend or hurt the feelings of a PWP who is reading here. That puts me right back here at home. Unable to express some feelings without hurting my PWP's feelings.

I guess I'm venting and frustrated this morning. Had a really bad afternoon and evening yesterday with my DH. I cried and really just wanted to run away from home. Many days I think I just can't take any more.

Praying today is a better one for everyone.

By jcoff012 On 2017.06.11 11:37
Al, while I agree with your many valid points, again, I don't agree that Carl's Requip has been a problem. He has been on this agonist for nine years, and does not seem to be bothered by nor changed superficially by it. As always, we are lucky. Our PD journey seems to be moving along much slower than many here.

I do agree, however, that the uninformed public IS a problem. But, this site does not need to be censored, but rather to be informative. What I have noticed with caregivers is that, for the most part, caregivers are frustrated and sad, but want greatly to help their PWP by coming here to vent, to ask questions, etc. of others who do not judge. I also feel strongly that too many need to follow the sage advice you imparted the first day I signed on...that being, to NOT hover, let him do as much as he can as long as he can, don't "do" things for him...I don't, and his neuro told us at our last visit that his remarkable stamina and attitude are greatly affected by that. Motivation is a great ally in the fight to remain as "normal" as long as feasible.

Right now, Carl's dream backyard is progressing nicely, with him at the helm. He has come to realize there are many parts of this construction he can, nor should, any longer attempt. BUT, he is cutting lumber, etc. daily. He accepts his limitations with PD and does not make unrealistic demands.

Yesterday was our fiftieth anniversary. The day before, he drove his truck the 35 miles to Santa Rosa to pick up the new outdoor fireplace, BUT he also picked up the wedding ring set he had ordered for our anniversary...(I took mine off years ago, and left them in a hotel in Disneyland!) While most days when we have appointments we go together, and yes I am more comfortable that he not drive that far alone, when he said he was picking up the fireplace, I thought nothing of him driving alone. Why? I know it's because I trust his driving and also know he is sensible with PD...he does as he wants within self-imposed boundaries.

I love my husband and always will. So, if anyone reads this board and makes any rash decisions as to the "plight" of PWP, or feels that by reading posts that ALL caregivers are the same, I say read the posts again. There is a lot of love here.

One last comment...In public, just be honest. Give people a chance...many want to understand, but even more want to help. We are upfront on many levels...We tell the waiters or waitresses I am on Weight Watchers and need help making good choices, and that Carl has PD if they notice his tremors or quiet voice. We do the same on airplanes, etc...we have NEVER been made to feel badly, but rather, we have had a few laughs, a few nodding of the heads, and even more, a LOT of kind assistance. So, I guess what I am saying is that the public cannnot understand, but it isn't their fault...if you want understanding or compassion TELL them. This board tells them. Some of it isn't pretty, but so be it. It is life with Parkinson's.

By LOHENGR1N On 2017.06.11 11:50
I didn't say or suggest censoring the post or the thread. I said I was concerned with the statement Impulse control Disorders are from The Parkinson's Disease, when the medical profession recognizes the cause to be dopamine agonist's. I didn't say to or suggest censoring posts or threads. How it devolved to that I don't know. I try to help everyone here on our walk with Parkinson's. And yet again if I voice concern over a statement said as fact when it isn't we end up with a mess.

By LOHENGR1N On 2017.06.11 11:54
Jane as I said way up above on this thread. It is reported that around 10 percent of PWP develop ICD's So even with taking agonists not everyone develops ICD's even though they are on the drugs

By fishing15 On 2017.06.11 13:04
[deleted]

By jcoff012 On 2017.06.11 13:41
Al, and others, we all need to enjoy life as best we can and keep moving forward...no hard feelings, no accusations...Al is invaluable as a resource, but more as a friend, PD aside. Everyone needs to take a deep breath and smile...and realize that we all have opinions and concerns, and we need each other along the way. Take care. Great people here!

By LOHENGR1N On 2017.06.11 18:33
I bumped up the post drum roll please. We're #1 in 2017 too!
Jim states "In addition to being recognized as the #1 caregiver website, We are also being cited as an authoritative source of information for the likes of eHow, About.com, support groups and University research pages."

With respect to everyone here We built this reputation by discussing all the good and horrendous times and situations We experience daily, hourly and in some cases minute by minute living with this disease. We reached this level of excellence by not shying away or censoring any topics and by not lumping drug side-effects and diseased caused effects as the same. Which was my concern. This has certainly been a vigorous thread lets continue to keep up the great work we do here. we are all in this together.

By sara hatch On 2017.06.14 16:07
I think it should be noted that most problems with hallucinations are drug related. It's difficult to pin point though as most people with PD are on some kind of drug besides CD/LD.


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