Does P.D. have a rating system, from from bad to worse, kinda like torandos ?

[151bill]

[bunngalo]

Yes, there are five stages. Here is a link, neurosurgery.mgh.harvard.ed...

[151bill in reply to bunngalo]

Thank-you so much for the info. It will be a big help.

[plainbob in reply to bunngalo]

Having browsed the site, it's very interesting. Much appreciated, thankyou.

[quirkyme]

I like the second one but some things are missing. My husband has lack of initiative but some of this is a lack of self-confidence. It's amazing how fast that went. I think it due to the shock from the diagnosis and learning to adjust to having a chronic and progressive illness. It doesn't assess the psycho-social well, which I think it all important. I think my husband felt himself vulnerable, as if no one would 'be there' for him when he declined, that no one would take care of him. (I know people whose partner/spouse left or divorced them). Or family is not there for them.

If my husband didn't have me, he'd be in a nursing home, I think. He's bright and aware cognitively, but his hands don't work and other disabilities would mean that he needs constant care (although I can go out for a couple hours). Having someone there makes all the difference in wellbeing, someone to monitor diet and in my husband's case, feed him at times (he can manage sandwiches and feed himself sometimes). I think anyone who is newly diagnosed might consider a support group, and most important, assemble a team of professional, family, and neighborhood/friends who will each play a part.. Hopefully, you'll have many years of ability and good living.

[JohnPepper in reply to quirkyme]

Hi quirkyme. We have met on this site before, but I never realized what a wonderful carer you must be. I take my hat off to you, and others will as well. I have always said that Pd is worse for the carer than it is for the patient. I hope you get the help and support you deserve.

Kind regards

John

[quirkyme]

Thank you John, I appreciate your kind comments. It's not easy, as you say, but care-givers do what we can. All the while we search for some way out of present difficulties/challenges, all the while protecting our loved one, like a 'she bear' (with that kind of fierceness and devotion).

We are: psychologist, social worker, exercise mentor, cook, server, personal care attendant, laundress, ever vigilant to prevent falls, homemaker, house-cleaner, landscaper, gardener, accountant, bill-payer, social director, lover (but often not in the old sweet way), masseuse, medical para-professional, medication manager, chauffeur to all excursions outside the home, runner of all errands, entertainer, and provider of solace for both--and all--in the family, friends, neighbors. Etc. Etc.

And we are 'lucky' to have this 'job' we never asked for. "Lucky" that is, if we can 'turn it around' or 'turn it over' and accept in time, with or without (as in my case) a traditional religious faith. My husband has always, without fail, shown the utmost love, kindness, and respect toward me. Anything I do for him is small repayment in all the caring and even nurturing he showed to me. Love is a circle and there are many circles we move into and out of.

My circle now includes a PD group I now lead. As another caregiver (hate that word) puts it, "you have found a new ministry" to a group in need of leadership, education, support, and socializing. Again, I am so grateful for all who put this thing together, including the Steering Committee.