For almost 5 years I'd worked at a nursing Home in Manhattan with a 50 bed HD unit, and knew of only a handful of others. Last week I found a home in South Dakota that "Specializes in HD".
I'm looking to make a list of Nursing Homes with multiple HD residents. If you know of a home, list it here with name, location, and approximate number of residents.
It would be a good resource for people who are looking to place loved ones, to know of a nearby facility that has HD experience.

My local SNF is

Terence Cardinal Cooke Health Care Center, NYC, approx 50 residents.

Kt71481
This is a good place to get this info out. I recently have been looking into NH familiar with Huntington's.
In **Potosi Missouri **Georgian Gardens** has a Huntington's wing with 18 patients and they are considering opening up another wing. I'm going to try to go there next weekend to check it out.
I found it online, our Center of Excellence Dr's make visits there. Seems like they would have made mention of it but it's like pulling teeth to get support from them. You pretty much have to find it out and then they'll say "Oh you should have just asked"
If I get down there I'll make a note on the place. Good job Kt!

Summerfield Health Care
34 S. Main Street
Cloverdale IN 46120

765-795-4260

10 HD residents currently and open door for others.



Edited 1 time(s). Last edit at 04/04/2009 08:38PM by Eric.

Here's some more, I finally found the list I had.



MASSACHUSETTS

Laurel Lake Center for Health and Rehabilitation
620 Laurel Street
Lee, MA 01238
Phone: (413) 243-2010


Tewksbury Hospital (longer term care facility attached)
Tewksbury, MA
Phone: (508) 851-7321


SunBridge Care and Rehabilitation Center for Lowell
Lowell, MA
Phone: (800) 966-5644



NEW JERSEY

JFK Hartwyck at Cedar Brook
Plainfield, NJ
Phone: (908) 754-3100



MINNESOTA

University Good Samaritan Center
Minneapolis, MN
Phone: 612-332-4626

Thanks KT, this is a Great Idea!

Good posting!

Carla, I was glad you posted the Potosi Missouri facility as I was not aware there was one so close. My sis just lives 1 hour from there. Thanks!

Lizzie,

I have heard that the NH in Potosi MO is nothing fancy but that the caregivers "get it". I am going to be going down after Easter so I will post what info I can. It's pretty far from here, about 3 hours.

Carla

Hi, my question is more about assisted living...can anyone help me with resources?

I?m new to the forum, and am have been living with HD for a long while it seems, but am walking a pretty lonely road. My symptoms are such that an assisted living situation would be most appropriate, but here?s the catch:

I?m a 100% service connected disabled veteran who makes ?too much?in disability pay to qualify for state assistance, but don?t make "enough" to pay for a decent facility. Tried spending all of my 2800 in an Adult Foster care home in Portland Oregon, where the residents were abused and I was not believed...meds witheld .. I got treated in hospitals where I was considered crazy or drunk, etc...since I?m a veteran, who "qualifies"! for "VA Healthcare" (HUGE OXYMORON), I can?t access private hospital care when I fall, seize, etc...

The VA system was content to leave me to my own devices, living in hotels, ?n case something happened, so someone would at least find my service kitty" even if I was out of it. Private hospitals saw a young woman and instead of sending me a speech therapist, or medicating me when my involuntary movements went on for days and robbed me dangerously of sleep, I decided I?d rather go somewhere where my money might make dying a little less painful.

I?m in Mexico, was BLESSED to find a Dr. who specialized in HD at the University of Mexico in Mexico City...he?s been more concerned with stepping up to help instead of stepping out... I wouldn?t be alive if not for him...but now I need more help..my family?s really toxic and is NO source of support...I?m too much of an extrovert to want to live, or die alone..and I want to be a part of people I don?t have to explain my repeating myself, or forgetting, or falling, or stuttering, or seizing, or wanting to die because I get so tired of doing this alone.

And I registered without reading the guidelines because I couldn?t find them. Can someone help me?

Thanks much.
Be well

Anyone know of a nursing home for HD in or near Reno? I am trying to help a caregiver find one for her husband. See thread I posted today. Maggie



Edited 1 time(s). Last edit at 04/09/2009 04:15AM by Maggie.

Mangojuice67,

In many states there is something called a Miller Trust or a medical needs trust for those who earn too much money to qualify for Medicaid but not enough to pay for their care. All of your income goes into the trust account and is paid out for your medical needs and then the state pays for the rest through the Medicaid program. It needs to be set up just right so an elder care attorney needs to be involved.

I live in Delaware and we have an office of the Public Guardian for those who need help but can't choose a family member or a friend. If you have a similar office in your state, I would call them. If not, call Adult Protective Services. They should have information about how you can get the care you need and an advocate/guardian.

Please keep us posted.

Marsha,

First, thanks for being kind enough to take the time to respond. Second, since I've been living in Mexico (country) since last May, I'm not sure where to begin...I seem to be in this limbo land where I'm functionally limited enough that no one in my "family of origin" wants to get involved and help me , and it WOULD be really hard for me to make a move anywhere, or back into the states, without having someone or something waiting for me on the other end.

Since I'm not residing at the moment in the States, I don't really have 'a state.' I guess that means I could pick and choose if there are states that are more disability friendly or service access oriented?

I'm not familiar with the terminology you used..about a public guardian, etc....

TWO QUESTIONS: Do you know the costs involved in getting help for people who are funds challenged...and 2, Do you know if there is a way to check into this information, or ANY RELATED LIVING SITUATION INFORMATION ONLINE?

Thank you, and be well

Mangojuice, my heart goes out to you. I wonder if you went to Mexico believing many false hopes that often come from there? But now, feeling very lost, because of your HD, as to how to come home? I have hd too, i'm in the early stages, yet i know what it's like to just feel lost sometimes, but fortunately i have my husband and friends. I think it must be very hard to have HD and be on your own, and now, to not know how to come home...keep posting to us, i'm sure someone here will know how to get you some help. We're all in this together

Barb,

Thanks for the thoughts. Came here for a lot of reasons, Mexico HAS been home at different times when the VA system had either ignored a condition or wrecked me in the process of trying to get help. The VA, and private hospitals or doctors in the STATES have been the source of false hopes.

I knew at least here, people are much less likely to label and then isolate you.

I came here, to hold a child from an orphanage I visited a year and a half ago, to step into the ocean, to see a sunset, and to die.

I came here, because I don?t seem to fit anywhere else. And I want to be responsible, safe, productive (volunteer), do whatever I can do with assistance...and being in the middle....makes figuring out where to step much more difficult.

Especially when my organizational and short term and working memory are killing me...it takes me so long to even post...let alone search via google, so yep, if anyone has any ideas...

Be well