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07-21-2008, 10:24 PM | #21 | |||
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In Remembrance
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http://maps.google.com/maps?f=q&hl=e...=19&iwloc=addr
this one is a typical but out of reach due to a new Walmart just up the way. Otherwise it would be a great prospect. Quote:
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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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07-21-2008, 10:30 PM | #22 | |||
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In Remembrance
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google messed up
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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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07-22-2008, 11:02 AM | #23 | |||
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Not wanting to put a damper on this ufea, but the following are wht it would not worj for someone like me.
1. I need privacy. I'm very sicual but also need time akone. 2. I can no longer cook. So, some poor soul would have to take up the slack. 3. I'm easily annoyed by white noise, such as TV or nusiic. The facility would need to be bug enough to insulate folks from sound. 4. i need my dog. He is being tained as an assistance dog, but others may have allergies and fear issues. He is a 130 lb rottweiler. 5. I need time outdoors. Sunllight keeps depression at bay. 6. I can grocery shop. but have probkems unloading from car to house. 7. I have zero tolerance for whinners. 8. I can no longer clean house, so again someone else gets stuck. Yes, I'm a pain in the *****, but I've lived alone most of my life. |
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"Thanks for this!" says: | lou_lou (07-22-2008) |
07-22-2008, 11:19 AM | #24 | ||
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Yappiest Elder Member
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what about contacting the major corporations that open assisted living or alzheimers homes? let them know there people with PD looking for some type of group living.
maybe they could start out with a "wing" in some places. in a regular house, in most cities, you would need to be zoned for group homes. that can be a big battle. any bed and breakfasts for sale? they would have a good kitchen set up. most likely many bathrooms. trade room and board for an advocate/driver/cook/housecleaner ? (hey..i also do accounting, web design, laundry...i think i have this job at home. )
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07-22-2008, 04:30 PM | #25 | |||
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In Remembrance
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I'm much the same way, but I think it is still doable.
1- Having one's own room is essential. These old motels lend themselves to that. 2- With enough people, a common kitchen, cook, dining is possible. 3- That's one thing about the old motels I have in mind, the dividing walls were often masonry and blocked sound. 4- Within your walls it would be your own business. (I am thinking individual condos here, not institutional.) Outside,I would think pick up the poop and keep him under control. 5- Landscaped grounds? Community garden? 6- Hire a community helper who serves as a driver for shopping on a schedule. 7- So? Have a no-whiners section! 8- Again, a community helper. Quote:
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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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07-22-2008, 05:54 PM | #26 | ||
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Member
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projected here are good, and i think are workable to some extent. WE have a horrible disease, we all need so much help. I like the idea of a PD campus, where everyone has a single room with their own bathroom. Privacy is essential to any quality of life issues. What we lack are the abilities to take care of ourselves on a number of levels which are constantly changing.
There are approx 1.5 million of us in the US. How do we deal with setting up "PD houses" across this vast country, it is difficult to see this happen. WE would have to have a "blueprint" for such specific facilities, and make them affordable for all PWP. That is where money for "research" should be going, to take care of those who already have advanced PD. Only we as PWP know what we really need, what and when. I would love to see an affordable "alternative living" infrastructure for PWP. We waste millions on shabby "research" for PD. It's time to address the real issues; if we aren't going to be cured at least find a way of taking care of the thousands of alone, forgotten PWP. Maybe the humane housing of PWP would guide what is further needed, places where people with other disabilities could get the specific care that they need, at a reasonable price. A whole book could be written on this subject. Thanks for tabling it Harley. |
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07-22-2008, 06:36 PM | #27 | ||
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In Remembrance
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I don't think we should have any responsibilities. By tossing in our income, we should hire for all housework, yardwork, and driving. I can almost guarantee that people won't be able to hold up their end of housework duties. I'm not even going to pretend that I would pull my weight with housekeeping. That, to my understanding, was one of the purposes of pulling income and living together. If we can't get ourselves fed, we won't get each other fed. Thus we have assisted living facilities.
I agree that privacy is a must and we once talked about a quiet room too. Pets are a difficult issue, unless we used one room for a kennel or something. IMHO, energy that we have should be spent on exercising programs, group counseling, yoga, etc. This won't be a resort even if it sounds like one. Those of us with advanced pD need these things and someone to push us to do them to survive. paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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07-22-2008, 09:36 PM | #28 | |||
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Member
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idea... an rv park?
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I have a post-encephalitic neurological disorder, but it does NOT have me! |
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07-23-2008, 02:04 AM | #29 | |||
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Junior Member
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Last edited by dbiker2; 07-23-2008 at 03:46 PM. Reason: addition |
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07-23-2008, 09:32 AM | #30 | ||
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Quote:
Thank you...Ibby |
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