my story

[SoniaT]

Hi Katrina,

I'm sorry to hear about your dad. It is scary to watch someone you love suffer so much. My mom had ALS and I cared for her for over 2 years, I was scared and overwhelmed the whole time!

Katrina I think you reached out to a really good group. People here have first hand experience of this disease and seem very helpful.

I agree that it is easier to talk to someone who understands what ALS is and is going through the same experience or has gone through it. I found out my "true friends" during my mom's battle with ALS, needless to say I have less friends now but I know that the ones I have will be there no matter what.

If you want to contact me, please send me a personal message, I will be sure to reply.

ps - I used to live in Toronto, loved it there, miss it now. I'm a Newfie living in British Columbia.

Hang in there Katrina,

SoniaT

 

[Amie]

hi KAtrina,

I am 29 and my father is 50. He was diagnosed 3 years agoa nd has since lost he use of his arms, has a feeding tube, a trach, and is slowly ( or is it quickly?) loosing the use of his legs.

This is more than hard it is almost unbearable. If you'd like to correspond...I'm open to it.

I hope that you are able to help your dad enjoy each day and find peace with the disease.

Amie

 

[glow1268]

Hi Katrina. I am in the same position. My Husband is 70 and he was diagnosed April 2005 with Als. Started in his lower legs. He has lost a lot of muscle in his legs and is now wearing braces which has helped him walk more steady and I am not as much afraid of him falling. I hope you are contacting every service available to you. With his Insurance he has a case worker and anything he needs I just contact her to be approved for equipment or Pt etc. He was given 2 to 5 years and if it has to be Thank God it started in his lower limbs and not his respirtory system. I am not looking forward to facing what will happen next. Being 67 myself I pray I will be able to manage his needs. I know when the time comes I wil be able to get help but even now I have accepted a lot more chores that he used to be able to do. if you feel like talking I am available too. We have two small Grandchildren 10 and 5 and they love their Papa. I feel real bad for them especially the 10 year old because she lost her other Grandmother 2 years ago and hasen't got over that yet. Hugs to your Dad and Mom and all of your Family. it sounds like good people hear and sometimes it helps just to talk and let things out. Gloria :wink:

 

[me]

Gloria and Katrina - welcome to our family. Most of the conversation goes on under "General Discussion" but we are glad you found us during these times.