I lost my father and yougest brother to ALS a year apart - Amyotrophic Lateral Sclerosis (ALS) Message Board

Coco Grace · 03-20-2009, 10:26 PM

Is there anyone out there who had similar losses?
If your out there...my fathers illness was the worst pain I had ever experienced but I had no idea how much worse things could be ....finding out my "little" brother had ALS too and had 3 to 6 months was a whole different thing ... he was a newlywed (His wife miscarried after he was diagnosed) and I felt very maternal towards him .... a truly incomprehensible level of pain and shock...I am looking for a support group in my area but no luck yet:

juniper5 · 05-18-2009, 03:28 PM

I am sorry to hear about your Father and Brother. I feel your pain. I lost my father to ALS in September 2004. He was 61 years old. It was the worst experience I have dealt with. Watching him get worse and weaker by the day and not being able to do anything to take his pain away. Being there when he passed away is something that can never be removed by my memory. I know that people say time will heal all wounds, but I feel like it has not. I feel like the more time that goes by is more time that I was robbed of spending with my dad. Coming on message boards have helped me by helping and informing other people. But you are right in the fact that there is not many support groups out there in local neighborhoods.

Stonepile · 05-18-2009, 04:07 PM

Coco Grace

Are you particularly wanting to meet face to face with other people? Have you contacted your local hospital? Often they have knowledge of support groups from which you might be able to benefit.

I have not personally had a family member with ALS, however I did watch my Grandfather pass due to CLL which probably ended in a very similar way. I have not been able to get that picture out of my head either and so I can sympathize with you. One thing is for certain and that is there are things that we cannot understand nor for which we can give a reason. For me this is where my faith has to step in.

I have read a book that I think truly helped me to handle things like this. Have you ever heard of the book, "The Shack"? It spent quite a bit of time of the New York best seller's list. I've handed out about 15 of those books. I'm sure there are other good books out there that could give you some support as well. If you read the book will you let me know what you think? Also, will you keep us informed as to you being able to locate a good support system? I'll be thinking about you.

zuzu8 · 06-14-2009, 03:38 AM

Coco-
The loss of both your father and brother to ALS only one year apart is truly incomprehensible.

Regarding support groups, isn't Brookline only about 5-6 miles from Boston? I know there are support groups there.
And I bet a call to Mass. General Hospital might be very helpful in steering you in the right direction.

Best of luck
zuzu

Coco Grace · 06-15-2009, 03:09 PM

Thank you all who have been so kind to reply ....I trully appreciate it!
I have been somewhat distracted from all as of late as my mom has had a second major stroke and I am her proxy and very busy advocating as she lost speech....Who new life could this tough ... I will contact mass general as they were "treating" my father

and happen to have a sample of my brothers blood for testing ....thay found no genetic links and i don't think they even know he got it .....
thank you all
and bless you with peace and happiness!
coco