For those who care for someone with Parkinson's disease
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By LOHENGR1N On 2012.02.22 00:31
Some will disagree with Me on this posting and that's ok. Some may feel offended and that's ok also. I'm not intending to offend anyone or expecting everyone to agree with My thoughts, however these thoughts need to be aired because they are important to the Parkinson's community.

We are and have been set up to fail. Harsh? No just a plain fact. I'm talking about two of the "D" words. Dementia and Delirium, scary and a fact of life in Parkinson's Disease and the many other diseases that fall under the umbrella of Parkinson's Plus. How many times do caregivers/partners falter at a forgetting where we placed the keys or remote? How many times do We and our partners feel the sinking twang of fear of onset of dementia? Too many times. Not all with P.D. or P.D.P. will develop dementia. Sadly some will and do. It's the roll of the dice with this disease. How many family or spouses and friends will diagnose by themselves dementia and just use it in their conversations and posting? Delusions and delirium for our medication are real and more apt to develop. Hallucinations and other side-effects. There have been posts on changes in the making of our medication. Farming out of the country and substandard products, even one post of a person being laughed at by the Pharmacist for complaining about the medicine not working right. We're not taken seriously because of misconceptions and misinformation about Our collective Diseases. For years I've been beating the bushes on Dementia verses Delirium. That's what the big deal is, people once a label is attached then whatever credibility We had is done "oh He/She is demented"! The hospital staff doesn't listen, the Doctors don't listen and guess what whomever we have advocating for Us isn't going to be taken seriously because they're listening to a demented person and relaying the babble from them. Now I'm not saying any of Us Patients babble but that might as well be used because that's what many of the medical field view our concerns as.

Question everything.......get second and even a third opinion! Don't take one Doctors opinion as gospel. Research dementia and delirium, find out side-effects or medicine. Don't label or allow labeling of patients until everything else is ruled out. Once dementia is diagnosed and on record it never goes away and misconceptions say the person doesn't or isn't able to make sound safe judgements of their well being. This is serious people, skip to the store while your charge is napping and something happens? Some hard questions could be asked....why did you leave them home alone with dementia? They wander off ...why weren't you watching and keeping them safe? To us lay people we might not see much difference in actions of the two "D's" but to a Hospital, Doctor, State agency or a sharp lawyer well it's another whole different beast. Some think they have "family" problems about care now? Let an attorney become involved then you have Problems (yes with a capitol P).

I'm not popular when I post things of this sort, generally I get a lot of heat and sometimes personal attacks. If I keep my keyboard shut and only answer questions to help others and don't rock the boat I'm tolerated. If I speak out or up about things then I'm chastised and should begone. Well I'm a boat rocker and shake things up from time to time (pun intended) while I have a voice I'll advocate and take stands. I've helped a lot of people and many times those who've been glad I'm here to help have turned on me also. But I understand that it's the nature of the human animal to act like that at times so I keep plugging on. I'll be posting again on what I don't know but as topics arise I'll be here. Take care, best of luck and hang in there!

By andy On 2012.02.22 09:00
Hi Al:
I have never posted before. My wife was diagnosed with PD last year and I have ready every post in the forum since then. I have found your take on things very valuable in that time. You keep on doing what you are doing and if people take offence so be it. Take care

By buddy On 2012.02.22 11:15
As a former home health care worker, I found your post to be very accurate. In some instances, the county or insurance company requires a "label", (which of course requires meds) in order to pay for care services. In the messed up medical world we live in, the easy thing becomes the difficult. Staying in your own home with a home health aide is a no-no to medicare, but give up your home and life savings and move to a nursing home? ....well, they can cover that.
Wish my dad could become an advocate for his own PD care like you are....

By Mary On 2012.02.22 12:53
Al, you have been a blessing in my life. Your words - even though I haven't always wanted to read them - have ALWAYS been helpful as a caregiver for my dad. Your insight amazes me and you've also made me laugh at times when I thought I could not even smile. One of the things I respect most about you is that your words are your truth and you'd never say them with hopes of offending, only hopes of educating and helping. I've printed off many of your postings and hang them on my bulletin board at home. Thank you for continuing to be a part of this forum. We are all better for it. Hugs and blessings, Mary

By seawench On 2012.02.22 13:15
Al, My guy and I have been the victims of labeling. Prior to the PD Plus, he had an extremely rare adrenal gland tumor that produced a "Chemical" anxiety attack, except he wasn't in a panic or depressed. Years before he had been battling a long term depression but we had found a wonderful pastor who worked with him one day (all day) a week for a year and we were very very sure that he had licked it. In fact when they tried to tell us he was depressed we would respond "He's not depressed. We know depressed and this is not it!" The private insurance system put him on anti-depressants and sent him on his way. Luckily an intern at the VA listened to him and checked the adrenal gland. TA DA! that was the problem.
They wouldn't listen to him and they wrote hoprrible things about me in their chart notes - but I'm glad we stuck it out. Unfortunately because it took two years to win that battle we lost what might have been honeymoon years before the PD plus got to the disabling point.
Thanks for writing a cautionary post for us. We are always so anxious to get a handle on the newest symptom or issue that we could easily jump into something we may later regret due to the consequences. We often ask the question "Is this a husband thing or a disease thing?"

By karolinakitty On 2012.02.22 18:18
Great piece there AL....

SO true how even the medical world can't tell the difference between the two and label people as they do....thank you for the post

By lurkingforacure On 2012.02.22 21:16
Books have been written about disease-creation and disease mongering, all for putting folks on meds for life which rakes in huge dollars. Sick, sick, sick.

I just read the other day that "new and improved" standards in the psych discipline are being issued which have even that profession's own members up in arms. Shy? That's now a mental illness, along with a host of personality traits that have heretofore been just that. Outgoing? Now also a mental illness.

All of these labels, though, are meaningless without some drug to "treat" comes big pharma to everyone's aid, just in time with some new drug (or a new use for an old drug), for all these mentally ill people living their lives just fine.

I'm glad so many here are so proactive for their loved ones, and feel so sorry for those PWP who have no one by their side to love them, hold them, comfort them, or make sure they are getting what they need and not getting what they don't.

By LOHENGR1N On 2012.02.23 00:05
Thanks everyone for Your kind words of support they mean a lot. andy, welcome to the forum glad you posted keep on posting we need all the help we can get. Again thank you everyone. Take care, best of luck and hang in there!

By parkinit On 2012.02.25 14:36
Al, thanks for the post, the warnings, the reminders, the bluntness. We need you in this forum! Thanks for being here.

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