Parkinson's Disease Tulip


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Old 07-13-2010, 02:06 PM #1
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I just returned from PA where my father is in a nursing home. It is depressing for many but having taught physically impaired, and learning so much, it didn't seem that bad.

One can't help but think of where we are headed. We repeatedly talk about baby boomers but is anyone in the business of building nursing homes? It's making his wife poor, and there are 4 beds in his room. This is an unpleasant subject - reality.

I see much money going in to useless research and very high salaries Is anyone building nursing homes? I'm not blaming researchers for not finding the answer. I'm thinking about where the money all goes.

Reading this board is my salvation, but a nursing home is reality. Our spouses and carepartners can only do so much. Someone needs to make the advanced a priority or the suicide rate will sky rocket. I'm not suicidal; reality is not always positive.

Please don't post about depression. I am just recuperating from a trip that was actually fun and I saw so many family members. I'm exhausted and useless today. This illness is not going to be resolved anytime soon and I'm in pain. We are suffering and studies have been going on for years; there is money in someone's pocket. Being tired today, I'm feeling resentful.

I got an email from a loyal pipeline member with an article saying there is a link between low vitamin D and parkinsons. A press release in fact. Hot off the press.

That about says it.

Money is needed for nursing homes, sorry to say.

paula
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Old 07-13-2010, 02:49 PM #2
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Default I'm with you

Yep. We're an aging population; not enough resources. My mom is in a cycle of residential family home-hospital-skilled nursing home-and back again right now with Alzheimer's. When I look at her, I see me in a few years. It's bringing our family closer together. Lot's of tears and laughter while we struggle with the whole medicare/private pay system trying to find the best care. It's a full time job.
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Old 07-13-2010, 02:55 PM #3
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Good points , Paula. I know of one -- Presbyterian Homes in New Hartford, NY (near Utica) offers comprehensive services and care in their Parkinson's Residence. The program was created, and designed in consultation with and supported by the local PD community there, led by the Central NY Parkinson's Support Group -- a group of forward- thinking and proactive people.

See the website at: http://www.presbyterianhome.com/parkinsons/

We know some of the folks in this group, and have heard the NH director speak at a conference

People from many other areas have visited and spoken with the staff and director, but don't know if any new projects have resulted.
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Old 07-13-2010, 03:20 PM #4
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Default here's the link

http://www.eurekalert.org/pub_releas...-vdl070810.php

forgot to post
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Old 07-13-2010, 04:23 PM #5
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Default Seattle and Minnesota

this is one in Minnesota in conjunction with the Strothers Clinic

https://www.parkinsonsspecialtycare.org/

and one that is being developed in the Seattle area

http://www.parkinsonsproject.org/
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Old 07-13-2010, 10:39 PM #6
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Quote:
Originally Posted by paula_w View Post
I just returned from PA where my father is in a nursing home. It is depressing for many but having taught physically impaired, and learning so much, it didn't seem that bad.

One can't help but think of where we are headed. We repeatedly talk about baby boomers but is anyone in the business of building nursing homes? It's making his wife poor, and there are 4 beds in his room. This is an unpleasant subject - reality.

I see much money going in to useless research and very high salaries Is anyone building nursing homes? I'm not blaming researchers for not finding the answer. I'm thinking about where the money all goes.

Reading this board is my salvation, but a nursing home is reality. Our spouses and carepartners can only do so much. Someone needs to make the advanced a priority or the suicide rate will sky rocket. I'm not suicidal; reality is not always positive.

Please don't post about depression. I am just recuperating from a trip that was actually fun and I saw so many family members. I'm exhausted and useless today. This illness is not going to be resolved anytime soon and I'm in pain. We are suffering and studies have been going on for years; there is money in someone's pocket. Being tired today, I'm feeling resentful.

I got an email from a loyal pipeline member with an article saying there is a link between low vitamin D and parkinsons. A press release in fact. Hot off the press.

That about says it.

Money is needed for nursing homes, sorry to say.

paula

Paula, I just found out recently through blood work, that I have a vitamin D deficiency..My Dr put me on suppliments, and Im scheduled for more blood work soon to see what is going on since I have been taking the suppliments
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Old 07-13-2010, 11:24 PM #7
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Default Assisted living

I think this is a dandy deal, especially early on before full nursing care might be required. I'm thinking of an apartment building with say 8 apartment where people with Parkinsons can live as independently as possible. One apartment occupied by a couple, one a cook and one a nurse/pt. This arrangement could last until we are in need of full nursing care at which time it doesn't really matter where we are. But i'm thinking those interim years whether with or without a mate living in community could increase our enjoyment of our lives and maybe even eliminate the need for longterm nursing care. It's something we should think about.
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Old 07-14-2010, 03:24 AM #8
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Default Affect on Caretakers

For those of us who still have spouses, Social Security has decided those who still have jobs should not collect social security until they are are 70.
They work their butts off all day day, then come home to take care of us.

Do you suppose we could be proactive and demand that the proposed bill allow those living with a disabled person be allowed to be exempt from the change?

Steve, it is not at all uncommen for PD people to be on vitamin D supplements. I was on them for many years.
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Old 07-14-2010, 06:55 AM #9
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Steve ,
So far, 100% of the people who posted about vitamin D testing have turned up deficient. i'm sure there are exceptions. I was especially surprised because I live in Florida. I'm on 2,000 mg a day - was very low.

Pam, that would be an ideal situation. And less expensive.

Vicky, I hear them talk about raising the retirement age to 70 with fury. A 70 yr old crane operator or construction worker in Florida? There are no words to describe the injustice and lack of reasonable judgement in keeping people, who by then are very likely to have health issues and who did NOT spend all the money, from their hard earned retirement.




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Old 07-14-2010, 02:06 PM #10
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Quote:
Originally Posted by paula_w View Post
Steve ,
So far, 100% of the people who posted about vitamin D testing have turned up deficient. i'm sure there are exceptions. I was especially surprised because I live in Florida. I'm on 2,000 mg a day - was very low.

Pam, that would be an ideal situation. And less expensive.

Vicky, I hear them talk about raising the retirement age to 70 with fury. A 70 yr old crane operator or construction worker in Florida? There are no words to describe the injustice and lack of reasonable judgement in keeping people, who by then are very likely to have health issues and who did NOT spend all the money, from their hard earned retirement.





My Dr put me on 2,000 mgs per day also..I went to have bloodwork done today, and I see my Dr on Monday

I also get plenty of sun, and eat alot of fruit..I was also really surprised when I was told I had a vitamin D deficiency as well..Pd must have everything to do with it..Imagine if we didnt get much sun exposure?
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