Anyone else dealing with familial ALS?

[aquirk]

Is anyone else dealing with familial ALS? My husband is now the 3rd person in his family to have it -- his father and one of his sisters had it. His other siblings (many) are asking what if anything they can do to contribute to research etc. There has been some discussion of genetic testing.

I feel like this is a steamroller coming at this family and there is nothing we can do to stop it.

 

[Al]

Have you gone to any of the support groups that ALS Ont. runs? They may have people in them with familial members. I know a lady in Barrie that has familial and we had a guy in Brampton that had it as well. Sadly, he passed away last year.

AL.

 

[Miss]

Aquirk, I am so sorry your family is going through this. I know how hard it is just having one patient. I cannot imagine three members of the family. I'm sorry I have nothing to offer, but you are in my thoughts and prayers.

 

[LizT]

When my PALS was diagnosed, his doctors wanted his family to come in for blood tests to see if it was the familial type. Thank God it wasnt. I dont really understand how they could tell from a blood test, but i was told he has the sporadic type.
Before i started taking care of my PALS, I worked with a lady whose husbands family has been struck with it. I believe they have had around seven people pass away so far. Horrible.
Sorry to hear that you and your hubby and family have to go thru this. Im new here, but i'd like to talk to anyone anytime about all of it. the more we share, the more we know.

 

[akaal]

Hi Aquirk. You may want to start with checking out ALS Canada (als society of Canada) you will find alot of the resources you are looking for there, including the nearest certified ALS medical center. My family has also been aflicted with FALS. (More than 12 family members since the mid 70,s) Education is your best tool, learn as much about this as you can. It is important to give each other as much support as possible. I'll keep you in my prayers. God Bless.

Andy