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My husband has frontotemperal dementia and now has been diagnosed with ALS. I don't know when the right time will be to place him in a facility. One NH I contacted wont take anyone with FTD. I couldn't believe it...even tho they have a dementia unit. Anyone else dealing with this?? My husband is 65.

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My heart goes out to you! My mother has ALS & FTD. My father was diagnosed with Louis Body Dementia this last year & my sister died 3 1/2 yrs ago from MS. Both parents are in separate care facilities now. It has been an extremely difficult road. I have for sure aged significantly. My heart goes out to all caretakers & family members who are dealing with these diseases. Get as much support as you can find! It is needed. Hospice programs are available for those diagnosed with ALS early on. They are angels from God! Be careful to take care of you😊 Blessings, Lisa
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I will, thank you very much.
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Florida, make sure his MD writes his diagnosis as "familial ALS with associated Fronto-temporal dementia" because FTD has two different meanings. Acronyms cause too much misunderstanding and improper handling and rejection when the intake people don't know the difference.
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Thank you both for your comments. My husband definitely has FTD not schizophrenia. He is not violent but I do understand some patients do act out He has been diagnosed with FTD for going on 9 years, but the ALS (familial) was diagnosed 3 weeks ago. Unfortunately for me, there are no support groups close by - (PA) but I have been on a telephone support group which I don't find very helpful. I have checked ALS, ALZ and FTD to no avail, but I will try again. Just taking one day at a time!
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Sorry to hear that your husband has these terrible diseases. The reluctance to take a patient with FTD may be the concern about potentially violent behavior. The general apathy can alternate with angry, scary outbursts that may be physically violent. I suppose that as the ALS progresses it would be easier to place him in care because he won't be able to physically act out. I recommend that you contact both the AFTD and ALS organizations. Also, order this free booklet from the National Institute on Aging, "The Dementias, Hope Through Research". This is a quote from page 5: ..." other forms of FTD are associated with aggregates of the protein TDP-43, a mutated protein found among people with a type of ALS that is inherited". Also, "In some cases, FTD is associated with progressive neuromuscular weakness otherwise known as amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). The signs and symptoms may vary greatly among individuals as different parts of the brain are affected. No treatment that can cure or reverse FTD is currently available.". There are other booklets available thru nia about dementias and other health issues. They are free to access online, or to order free printed copies to be mailed to you. Also, if you haven't already read it I recommend the book edited by Lisa Radin and her son "What if it's not Alzheimer's?" When the time comes you will probably be able to find the right care facility for him. Be sure to plan for your own health and well being. You may be able to find several types of support groups in your area... ALS, FTD, ALZ, etc. The Alz Assn is a good resource too because of the coverage in their material about "the other dementias". The FTD/ALS will take one of you....don't let it take both of you. Best wishes on your long journey.
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You may have to clarify whether FTD is Fronto Temporal Dementia vs. Formal Thought Disorder (schizophrenia). A nursing home will avoid psychotic patients. They can manage ALS and dementia, but not schizophrenic patients.
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