Parkinson's disease

[David Votoupal]

One of my closest family friends had had Parkinson's disease for well over a decade now. In this time, and with great support from her family as well as mine, she managed to cope remarkably well with it.

However, the past 12-18 months has seen things take a turn for the worse. I've spent a lot of time around her, enough to notice that the effects of it in that short period have been far more debilitating than they were for the best part of 10 years. Joanne's suffering because she knows that she's increasingly unable to do things that she used to be able to do, and her husband has become virtually house-bound.

Just last week Joanne went in for a 10-hour operation at Royal North Shore Hospital and seemed to come out of it well, but yesterday my cousin (who is married to her son) sent an SMS message telling us that Joanne's condition has deteriorated even further.

Now, I want to ask, is this the normal pattern for those who suffer Parkinson's and if so what should we expect next? My mum's going in to visit her today, and she also visited yesterday, and I'm honestly starting to fear the worst. It really bothers me because I care for Joanne and her family so much, as they've been a part of my life since the day I was born and they are now an extended family since my cousin married Joanne's son in 2001.

Her husband has long insisted that he's able to cope with anything that comes ahead, but judging from what I've seen I'm starting to have reservations about that.

 

[Captain Sensible]

I cant answer your quiestion but I hope everything works out OK.


Maybe a search on Google could provide some more information?

 

[David Votoupal]

Thanks but I'm really not sure what to think... because anything is possible. Joanne seems to lighten up somewhat when she has her friends around, especially me. That's the reason I've spent a lot of time with her in the past 18 months, because all I want to do is make her happy. I'd give my all to see that, because selfishness is something that's never been in my books.

All I can do now is to pray to God that everything will be alright and that she lives to fight another day.

 

[lioness]

I can't offer any first hand experience on the subject, but I agree that doing a Google search would get you all the information you need.

All the best.

 

[skipper kelly]

Good Luck David.

 

[Asgardian]

David, sometimes words from others may seem trite, this I cannot alter, but please accept my heartfelt best wishes.

I have experience of Parkinson's within my family, background is that my Dad died in 1971 of heart related problems, my Mum remarried in 1973, my Step-father died in 1996, he was bed ridden with Alzheimer's Disease AND Parkinson's Disease.

What killed him is really unknown, suffice to say that both conditions were devastating. He died an undignified death, bed-ridden, knowing no-one, he had been in a nursing home for the last 10 years of his life, it is not possible to have such a patient live at home.

Please do not take this the wrong way, I am a firm believer in euthanasia.

People we love and care for, should never be made to suffer, to lose dignity, to have dimished quality of life just for the sake of "existing" a few more days/months/years.

To make such a patient suffer so, is, in my opinion, selfish, the fact that terminal patients like my step-father was revived twice, even though he was in the final stages of existence, is down-right criminal, it is uncaring.

I am sorry about ranting, but this is a subject close to me.

Mourning over death is temporary, recollections of past loved ones are eternal, but watching someone loved die just a little bit, day after day, will almost suck you down into that very same abyss.

 

[evade28]

yeh true asgardian, theres nothing worse then watching someone u love waste away.

 

[carn_the_nmfc]

Hope that your friend recovers from this bad bout of Parkinson's Disease, David. Thinking of her and you at this time.

 

[David Votoupal]

I just got home from town, and I got the news that Joanne's feeling much better at the moment. The signs have been erratic in recent months, sometimes she's good and other times she's bad, but what matters now is that she feels better and has been given a chance.

 

[Mooster7]

Originally posted by David Votoupal


Now, I want to ask, is this the normal pattern for those who suffer Parkinson's and if so what should we expect next?

Yes, it's normal.

There is no real treatment for it. You can make improvements with some treatments ie Dopamine medications, anti-oxidants, surgery, and even forms of self-hypnosis. Some patients respond better than others. Improvements are temporary. At best, it's one step forward/two steps back.

At any rate, the condition will worsen, until she has no control over her motor functions at all. The tremors will lessen. Her ability to communicate will diminish to nothing. And she will die. Usually from complications of malnutrition, or bed-ridden pnuemonia. The efffects and rate of deterioration vary, just as does the response to treatment. There is no establishing a time-line.

If she is cognizant, now would be the best time for her to make decisions as far as life support, artificial feeding etc. If not, the family needs to assign legal responsiblity for her care, with one person designated to make health care decisions for her.


Sorry. Tough thing to have happen to someone you care about.

Peace,

 

[David Votoupal]

Thank you very much for that. Yeah sounds like it- the surgery was to put motors into her brain, more or less, that will enable her to hold on at least for now.

I mean, yes I will admit I'm affected by this because of the amount of time I spend with Joanne and her family. It's inevitable that I would, seeing they're my cousin's in-laws now and have that very special bond with us. She's notoriously stubborn and set in her ways, but she's been a fighter all this time.

So watching her condition deteriorate so badly in this time has been all too agonising to watch for me, it's been on my mind every single day and it doesn't help that I have so many other things on my plate as well. If anything, I would be willing to sacrifice a lot just to care for her, but I'm not sure how that will turn out.

 

[David Votoupal]

Joanne was first diagnosed with Parkinson's 13-14 years ago as far as we can remember. Like I said, it really didn't seem to affect her much as she still enjoyed life- she drove, went places, did gardening and cooking, etc.

This year in particular, I began noticing a few things in her:
- an increasing stubborness and spreading herself too thin by working in the garden very hard and then tiring out
- she's even struggling to get up and walk now

The whole thing about her condition wavering is that every time I called her house, her husband would tell me she wasn't coping at all. Whenever I got there, Joanne seemed OK which kind of confirms what was said about her mood depending a lot on the people who visit her.

Mooster7 says that it's normal for the above stuff to happen and indeed it is, but surely there have been cases of Parkinson's where this debilitating stage comes earlier (i.e. not so long after it was first diagnosed)?

 

[Mooster7]

Originally posted by David Votoupal

surely there have been cases of Parkinson's where this debilitating stage comes earlier (i.e. not so long after it was first diagnosed)?

Like many diseases, the progress varies from patient to patient. Adolf Hitler went from virtually asymptomatic in early June 1944 to having a fairly advanced case of Parkinson's by April 1945. Anxiety vs a sense of well-being has a lot to do with it.

Under extreme cases of acute stress, advanced Parkinson's patients can revert to a temporary normal state. I saw that happen once. I had responded to a house where an elderly man had taken a nasty fall down a set of concrete stairs. His wife was upset, but very helpful providing information, going around the house gathering up medical informatin, medications and even the car keys. She was going follow us to the hospital in their car. Suddenly she collapsed and exhibited tremors. She didn't make any sense afterward. At first, I thought she had a seizure or perhaps a stroke. As it turned out, she was an advanced Parkinson's case, and this was her normal state. These stress-induced returns to normalcy are called paradoxical outbursts .

So absolutely, the emotional state of the Parkinson's sufferer has quite a bit to do with the symptoms they show at any given time. But like I said, if the disease runs its full course, the pt will eventually deteriorate to a vegetative condition. From there, other opportunistic failures generally claim the patient.

Peace,

 

[David Votoupal]

I'd like to thank all of you who have sent your best wishes. I should be visiting Joanne's family today, so maybe I'll get a better idea as to how she's doing.

Once again, thanks everyone.