For those who care for someone with Parkinson's disease
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Topic Just thinking (musing) Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.07.27 00:03
Counseling and Psychiatry ?

These two issues have been raised in a few threads I've read lately. I plead ignorance in this question, does anyone know if they push these issues in Patients with Alzheimer's Disease? I'm just wondering. If so how effective are they? Dementia in Parkinson's Disease might be different in attacking different parts of the brain but it is dementia. I do know that if a Counselor or Psychiatrist isn't well versed in the cognitive issues of Parkinson's Disease and or the Medical side effects of Medicines used to control Parkinson's it isn't going to do much good. As I've said before you'll end up with two apples and an orange in the room as the apples keep trying to tell the orange to be and act like an apple it just won't work. Our Parkinson's effected brains are breaking down, rerouting themselves so in time "normal" behavior isn't possible.

In time if We all live long enough it seems we'll develop dementia. It's heart wrenching to see, the spiraling back to earlier stages of life the forgetting or unlearning and inability to relearn things. If by some miracle I avoid getting hit by a bus, struck by lightening staggering into the path of a falling meteor or any other of the plethora of things the can end life. If I make it that far and am demented I hope my family and loved ones will view it as an act of kindness by G-d. I will be at a place or in a stage where I won't realize what I've lost. I won't have to worry about not doing the correct thing or be chided I know better. My faculties are still for the most part intact (I don't believe anyone's are fully intact, lol). I won't be like a child "pants-ed" on the playground caught by surprise, onlookers agape because of what I did or what just happened. I think I view that as a merciful act of a caring G-d. I hope loved one's and caregivers can learn to view it that way also. To learn to accept I'm not trapped inside full of anguish over what I've lost or aspirations not met. That in some way I'm seeing the world the way it was meant to be seen, a glorious sun rise or set. Not worried about hazy air from pollution or rain might ruin the wax job on the car but enjoy the feel of the rain on my skin because now I really don't have the sense to come in out of the rain I have the sense to enjoy the rain as it should be enjoyed.

This is a awful disease We the Patients are trapped inside a body going horribly wrong! You loved ones and caregivers trapped outside helplessly watching not being able to intervene or set all right. It's tiring and wearing on both, as time goes on the "rules" change as we change and the disease advances. Psychical and mental changes. Our behavior can change, not from deceit but from dying off of or injury to cells in our brains. Thinking can slow. Not from stalling trying to form alibis or excuses but from faulty wiring and delayed neural pathways. This disease is always moving forward unseen in it's destruction. These results are shown by Us, exhibited by Us, sometimes hurtful, sometimes shocking, at times humorous. And for the most part unintentional. It's a tangled mess to be sure however what must be remembered is, as in all of life it is a transition. From childhood to teenager to adult. From wellness to illness to death. Some meet transition on their terms some don't but we must travel with dignity and be allowed to transition with dignity. We can't be counseled out of it or Psychologically stop it anymore than you can fit into the clothes you wore on you 3rd birthday party. We can go with dignity, be treated with dignity and teach dignity in the face of adversity. Try not to weep over what might be lost, enjoy each and every day and minute. Take comfort in knowing what is lost is probably not missed as much as you suppose it to be. Roll with the punches. Roller coasters are fun AND they even have ups and downs! Hang in there friends and be easier on yourselves.

By susger8 On 2011.07.27 10:32
I always enjoy your philosophical musings. This one too.

My dad started getting confused about 6 years ago, which was when I started caring for him. I learned early on that I couldn't usually tell him to think or behave differently. In his case, he really couldn't help it. If I explained that the TV wasn't broken, he just should push button A instead of button B, he was not going to remember that more than five minutes at best. If I asked him not to try to get up when nobody was there to help, he would agree, but do it anyway because he forgot he wasn't supposed to.

I've said it before, that I do think it's in some ways a blessing for him to have dementia to the extent that he doesn't realize what bad shape he's really in. It's painful for me. He was an engineer who could fix anything he laid his hands on, and now he can't turn the TV on. But it's what life deals us sometimes.

I know that every situation is different. I'm sure there are plenty of PWPs out there who are just being difficult to be difficult and need a firm talking-to to straighten up. I'm pretty sure that's not what's going on with my Dad, though. Although I'm usually a believer in counseling, it wouldn't help him. (might help me some, though!)


By plcpainter On 2011.07.27 10:34
A very thoughtful post. As a pwp you offer insights that are powerful and often inspiring. I always read your posts and find them helpful. Thank you.

By karolinakitty On 2011.07.27 11:06
LO... I've been getting more into the Alz/dem things and have been following a doctor at John Hopkins called Dr. Peter Rabins, well known for his work with these two DIFFERENT diseases. They are different. Neither are pushed into therapy by this doctor. The caregivers included, unless they have some underlying issues themselves, like depression, or bi-polar, things like that. HOWEVER, there are support papers and groups he recommends to LEARN how to deal with issues involving ALZ/DEM. HOW TO's on helping the patient as well as the caregiver.
I have always gone against therapy, even when my own child was in and out of Psych hospitals since he was 8....only because at that time...25+ years ago, they weren't as involved with children's psychi's as they are today.....putting a child on several drugs just to keep them focused in school is not the answer in my book.... i digress....
In my eyes, how can you give counseling or therapy to someone who can't re-learn to begin with? How can you teach an old dog new tricks when the brain can't comprehend how to comprehend? The rerouting of everyday functions is a losing battle. You can distract, come up with new ideas, but, you can't re-learn. Keeping your mind sharp at the onset is the key to helping stop progression and from everything I've read and done it DOES work.
I think for the caregiver, you need to get out your frustration, and if therapy works for you then go to it.....but for the patient....
I can see sitting in a room, as a couple, going over issues and having the person with dementia saying over and over again, how they don't do that particular issue..not because they are in denial, but because they truly don't remember doing it, causing it or saying it.....
You all have to remember that it is the brain we are dealing with ..all the way around.. the central nervous system out of whack because messages aren't properly being sent. To date there are no drugs you can take SAFELY, and i note SAFELY, with PD meds that would truly help out the PDer......They may work for a short time, but soon the side effects outweigh the good the drug was doing in the first place......
It IS heart wrenching to see the person you know, whittle away by a disease you have no control over. Have a person who was once the kindest suddenly turn and be the meanest. To have someone just sit there and stare out into space not knowing where they are or even who they are, it's a heart killer.....
Can psychologists/psychiatrists really think they can help someone to get better from this? It's proven that Alzheimers is the 6th leading cause of death, that is incurable, so how can they even think to take money from someone they know they can't cure?
This is just my opinion and dealing with dementia since before the diagnosis of this disease, i can't see where any counseling for my guy would do anything. HOWEVER, i can say proudly that working hard to slow the progression, has done wonders...and working hard by both patient and caregiver.... he has to be involved..he has to work the games and listen to the music and you CAN overcome issues that pop just takes work...I know we are all tired....i get tired too...i just said to a friend today, i want one night of uninterrupted sleep....but that is the face of this disease and we have to look at it everyday...we can choose to give in and give up and get frustrated..or we can adjust and abide in the best way we know how..... knowing that others are in this spot helps..knowing i can call on friends, that i have met here, to help me out when I am stuck... it's a's a help... it's comfort... and whether we agree or's our thoughts and our voice that stand.........

By mytngenes On 2011.07.28 09:06
I needed to hear this. Thank you do much for your thoughts and musings!!

By Elly On 2011.07.28 20:58
Wonderful post, as always.

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