For those who care for someone with Parkinson's disease
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By ekatz04 On 2007.11.30 08:46
Hello everyone, My name is Eyal and I am a student of Occupational Therapy. As an exercise for one of my courses, dealing with support groups and group activity in OT, we've been asked to approach an online discussion board (relevant to our studies) and try to find out what it means for its members and how it helps them.

this forum's administrator has been kind enough to allow me to post my question here. (I should emphasize that my exercise is meant to review the general attitude of forum users, not to discuss specific answers, and that it is not meant for research purposes and will not be published or referenced anywhere.)

So, after this lengthy introduction... I would greatly appreciate it if anyone at all wished to comment on whether, and how, has this forum been significant for them, and how (if at all) it has contributed to their everyday coping experience.

Thank you...

By annwood On 2007.11.30 18:23
Welcome aboard! I hope that we can help you with an unerstanding of PD Caregivers. From my perspective the Forum allows me to ventilate my anger, fears, amd uncertainty to others who are in the same situation. Not many professional or lay people have a good understanding of the disease or the toll it takes on the caregiver. I have found that there are several "regulars" who post and at any given time some of us are ok and some of us are hurting. We all have our ups and downs. The group tends to recognize when one individual is in need of help and at that time they tend to be there for that person. Rarely are any of us carefree but the compassion of the users is in full evidence when we need it.

We have loved ones in various stages of PD, of different ages and sexes, and with a variety of symptoms. Many are attempting to manage careers and families, some of us are caring for parents others for spouses, some of our loved ones have PD dementia which makes matters so much worse, most have financial burdens as a result of PD and ALL of us are exhausted. We usually have lost most contact with the outside world - no time for friends, vacations, or relationships. A shower is a luxury and we don't even think about 8 hrs of sleep. Despite all of this I have never encountered people who were feeling sorry for themselves. It is a brave group of individuals who are trying to cope with an almost impossible situation while at the same time extending a hand to others in the same boat.

I was an oncology nurse for 25 yrs so I was familiar with terminal conditions. The difference is a cancer patient either gets well or dies in a relatively short period of time compared to PD patients who slowly loose their battle over many years. In the case of those with dementia you loose your loved one long before they cease to exist. It is so painful to watch them drift further from you every day. No matter what someone says it is a very natural reaction for a caregiver to resent the PD patient and what the disease has taken away from them. This group seems to understand this. Outsiders have compassion for the patient but few think of the caregiver.

Good luck with your project. I feel all of us will be willing to help. Pay attntion to how one may be low on Monday but ok and jumping in to help someone on Thursday.T

By Pearly4 On 2007.12.01 08:43
annwood has said so much so correctly. The board was down recently - I think we all panicked -- felt as if my last lifeline had been cut and I was left adrift again. This board keeps us sane - no where else can so many unseen and unknown people understand and accept so much from each of us. I don't think any of us can say anything that the someone else hasn't said or felt. The ideas, suggestions, etc. are wonderful and more than helpful but, for me, the handhold and return to sanity are what keep me coming back........that and the hope that I can occasionally offer the same to another. (Huge sigh......I guess we caretaker types can never get enough!)

By grazia On 2007.12.01 11:33
hello, if I have understood correctly, you are looking for answers about what this forum has ment to its users. Well, I have participated actively some years ago, when I was a caregiver about my father, who was ill of PD. Apart the obvious answer that the forum gave me the chance to vent and was a powerful source of information and of mutual encouragement, what I did found surprising is that, even today that eveyrthing is over ( my father died in 2006 ) I still come here to read the posts , and sometimes to write on the forum, because the people on here have become almost like people that i know in some ways....So, to me, the experience in this place has been part of my life, not in a virtual dimension, but in something deeper. I hope you have understood my meaning, english is not my first language. Thanks.

By ekatz04 On 2007.12.02 11:02
Hello again,

I am just writing to say a profound "thank you" to everyone who answered my question or even took time to read it. Thank you for welcoming me and for helping me with your kind and honest answers. (And a note to Grazia: I really understood what you meant, and English isn't my first language either.)

And one more personal statement: We studied a lot last year about Parkinson's Disease and its effect on patients. Yet no one really covered the issue of its effect on caregivers. A quick glance at other topics on the forum made me understand, in a way I couldn't have otherwise understood at this point, what you and your loved ones are going through. I have no words to really express my admiration for your courage, love, patience, perseverence, faith. I've never been in your shoes and won't presume to speak for anyone but myself, but I'll say this - I think your loved ones are lucky to have someone love them as you do, especially with an honesty and awareness of the difficulties. I hope if I were ever in this situation I would be able to do the same. May God bless you all with love and hope. Eyal

By Pick On 2007.12.05 20:24
I'm sorry I missed out on this thread. So much has been said already but I'd add that unlike a support group that might meet once a week or month (as if I'd have time to go anyway haha), this forum is here for me 24/7. These caregivers know all too well that you may be at the end of your rope at 4 AM after the umpteenth diaper change or just being up all night trying to convince your parkie its time to take his meds and go to bed. Who's going to be there at that hour but you guys?

Also, as close as I feel to the posters on this forum, I also believe the anonymity encourages more honesty and openness. I've admitted things here....and seen others admit things...that I think frankly would be much more difficult to confess if we had to look at each other face to face. But who knows...

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