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PWP w/o caregivers

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Old 07-20-2008, 05:28 PM   #1
little rock
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Default PWP w/o caregivers

Just curious, how many parkies are out there try to do it on their own? In short without a caregiver.
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Old 07-20-2008, 05:51 PM   #2
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Location: Nanaimo, BC Canada
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That is my situation although I have home care come in twice a day to help me with housework and meal prep. I enjoy these interactions. My son stays in a down stairs suite but it is not ideal for either of us. The idea of having a community of pwpd living and sharing costs has always appealed to me. The sameness brings a certain level of feeling being part of a social scene, something I miss. I recently moved here so don't have that kind of camaraderie yet.
"Trust your nervous system" - Timothy Leary
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Old 07-20-2008, 08:14 PM   #3
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I just watched the Bucket List....talk about complete identification with someone.

I need some help; family have jobs, careers, their own children - are always busy. I can joke around with others in my condition, but it doesn't quite make it with those who don't have it or are not closely connected. I want to laugh a lot more.

I really need help with nutrition. I just can't work up the energy or desire to cook and eat what I need. I'm interested in hearing more ideas and especially locations.

I am in limbo now, but have family around me. No single caregiver tho.


"Time is not neutral for those who have pd or for those who will get it."
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Old 07-20-2008, 11:08 PM   #4
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I live alone but do not require a caregiver just yet. I still manage quite well and hope this will continue for some time. I do worry at times about what will happen when I can't manage. A community for PWPD is a great idea, I hope it catches on in the next few years. I'd rather go to a place where I have something in common with the other residents and the caregivers are trained specifically for our needs.
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Old 07-21-2008, 02:03 AM   #5
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I live alone ona small farm with two horses. I can no longer manage. Friends come and mow for me, but every night when I climb the ladder to the hay loft, I wonder if I'll make it down without falling. The house is a wreck and needs cleaning badly. It has been weeks since my horses have been groomed. I'm looking for homes for them and the farm is for sale, but in this economy it won't sell anytime soon. I took in a roomate a couple of months ago. I offered free rent in exchange for help. In two months he spent one hour weed wacking. Finally, I kicked him out, but he left half an out building full of stuff. I now must hire someone to come haul it away.
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Old 07-21-2008, 06:16 AM   #6
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Default I have a suggestion

Having been immersed in real estate development for a iong time I had a project in ming that might be worth thinking about.

All over the US there are what were once small mom and pop motels that were stranded when the Interstate system was built. Typically constructed in the late 40s they lie on what were then major highways, are single story and built on a slab, and range from 25 to 50 units with each its own entrance. They were often called "Motor Courts" or similar.

There are thousands of these across the country. Probably a hundred within anhour's drive of any city. Many are for sale as they are "outmoded" for a culture taught that "new" is "better". They would be ideal for the purpose.
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-21-2008, 11:06 AM   #7
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I have lived alone since my official dx in 1994 and three years before my first noted motor symptom in 1988. I don't require a carepartner, but there are times when it would be nice to have someone here.

After all these years it is not easy. I have begun to need someone to go with me to MDS appointments, but there is no one. I would like someone who can communicate better than I can and would share their personal observations of me. My oldest daughter, whose home I am in several times a week, lives only 10 miles from me, but she feels her plate is too full with an autistic son and doesn't want to become involved with my PD.

I think the emotional and physical living alone with PD is the hardest. Cleaning the bathroom and other household duties are hard and don't get done as often as they should...like once every three or four months for the bathtub. I have found a way to sort of clean the tub without getting on my knees. Spray the surface with Dow bubbles...then use a sponge on a stick to clean the surfaces...not the best way and doesn't get it super clean, but it does the job somewhat. My dust-bunnies collect until I know someone is coming into my home, only then do I vacuum them up.

And driving...I am not too bad to continue to drive...but these days are numbered. (Well, if you count the days until I become unsafe. But even then, can I hide my PD driving issues...hummm...and continue to drive...another thread for someone to start...DRIVING....yes or no.)

Traveling alone is very hard, especially airports. Not all airports have those electric carts, Baltimore is one and it is my home-base airport, and I have not given into using a wheelchair. The train isn't too bad and I can still do okay in the train stations. The rushing around of the folks around me...don't care for that...the rush to get onto the train. Depending on the time of the day, there may not be a seat by the time I get to there.

Here in Gettysburg we have many of the old "motor courts." The ones in town have been bought up by Gettysburg College and converted into Dorms for students. The ones scattered outside of town are still in use...mostly weekly and monthly rentals.
You're alive. Do something. The directive in life, the moral imperative was so uncomplicated. It could be expressed in single words, not complete sentences. It sounded like this: Look. Listen. Choose. Act. ~~Barbara Hall

I long to accomplish a great and noble tasks, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker. ~~Helen Keller
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Old 07-22-2008, 10:54 AM   #8
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Your living situation sounds much like mine. Although diagnosed 4 yrs ago, I have only recently really accepted that I have PD and I must take ownership of my treatment and care. I joined a support group and "reasoned" with my health plan until they referred me to the Parkinson's Institute down the road in Sunnyvale, CA.

I immediately noticed that the majority of folks who coped well had partners. As a matter of fact, I think I am the only one in the support group that is on their own. While I am hopeful that the need for a full time caregiver is a LONG ways away, I have begun to ask for help as it is needed.

I can relate to your offspring situation. My son recently developed adult onset epilepsy and is trying to figure out how to deal with that. My daughter tries to help but lives 50 miles away and has a small child while working full time. BTW, I know it is not an option for many, but the lady who comes every other week to clean my bathroom and kitchen is more than worth the hair color and mani/pedis that I gave up to afford her.

The experiences and information that all of you share has already made a huge difference in my day to day attitude. Thanks, Carolyn, and the rest of y'all too!

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