The Family Caregiver Forum
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Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.
majikgypsy
Posts: 12
Joined: Jul 2010
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Monday July 19, 2010 1:30 PM
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Hi, I was wondering has anyone ever cared for someone with ALS? My husband has had many health problems, and even went into remission for Hep-c, he's had cancer removed, has 3 herninated disks and PTSD (all thanks to 22 years in the Army).
At first, it was problems getting him to the specialist. Then it was accepting this. And after 2 years, he's finally admitted he has it. I just wonder how to make it through this one.
I took care of my dad when he was dying, took care of my mom for 4 years after that and also took a job taking care of a handicapped woman. Bottom line... my back is really bad. Since ALS will eventually leave my husband bedridden, I am just kind of looking for some kind of support rather than my friends crying over us.
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Blessings,
Jan
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rzxq2y
Posts: 1612
Joined: Jun 2009
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Saturday July 24, 2010 9:56 PM
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Hi, Jan,
I believe that there are at least some caregivers in this forum caring for loved ones with ALS. Also a number of us, care for loved ones with MS, Parkinson's disease, and other nerulogical diseases. I care for my wife with Oarkinson's disease. While progress at different rate from ALS, I also know that her disease will take away all her mobilities and other important abilities. Only after a few years after she was diagnosed with the disease, she can barely walk a few steps and her speech is very hard to understand. This is the right place for us to support each other and help each other.
I know that you have already read at least some of the posts under "Miscellanoous Tips". Most of the posts deal with mobility and safety tips. As your husband needs more help, hopefullt these tips may be of use.
Sorry to hear that your husband has ALS. A friend of mine lost his wife to ALS several years ago, after a few years fighting the disease. It is such a terrible disease. My thoughts are with you.
Best Regards,
Min-Shih
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lkingsbury
Posts: 1
Joined: Aug 2010
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Thursday August 05, 2010 10:49 AM
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Hi Jan
My husband was diagnosed with ALS on July 3, 2007. He is now in final stages of the disease. I am so sorry that you have to deal with this on top of all you have already dealt with.
You mention that your husband is a veteran. I hope you are aware that ALS, as of October 8, 2008, is a service conntected disability and the VA will cover his care 100% so please, if you have not done so, contact your local VA.
Also, the MDA has ALS clinics that are very helpful. An ALS diagnosis made me feel like we were thrown in the middleof the ocean and had no idea which way to turn becasue there are so few doctors that deal with the disease. Our visit to the MDA clinic was wonderful. Our first visit was 4 hours long and when we walked out of there we had a social worker, we met with a doctor that assigned us a speech therapist and a respirtorits doctor....all of which you will need. You will need a referral from your doc for the clinic but I encourage you to do it.
The ALS Associaiton is also helpful We joined as advocates becasue it felt like it was the only avenue to fight this disease. It's easy to get depressed when you feel so helpless, some volunteer advocacy work may help empower you mentally with the knowledge you are fighting this.
Please feel free to contact me at l.kingsbury@roadrunner.com. I know how alone you feel in this but you are not alone. There are a lot of us dealing with it.
God Bless you and your family, and I will keep you in my prayers.
Lisa Kingsbury.
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Lisa A. Kingsbury
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