6-12 months

[Mydad]

Hi all,

Well my mom received my dads disability paperwork and what the doctor wrote and it saddened us tremendously. The doctor gave him a prognosis of 6 to 12 months from date of diagnosis to live. The doctor did put in the disability paperwork that it is Bulbar onset, which we knew already due to where his symptoms started. His speech is going day by day and its getting harder to understand him. We are hoping to get the Eyegaze soon. This all just seems so unreal and hard to fathom. I know the doctors do not truly know how long a pt has, but seeing it in writing it us straight in the gut.

Thanks for listening!

 

[KimT]

The doctor probably gave the prognosis so your dad can get disability and the right care. Nobody knows how fast or slow ALS will progress, whether it will speed up or slow down, etc.

Does he already have a feeding tube? Is he on BiPap? These two things will improve the quality and amount of time he has left.

Sorry about your dad. It's a terrible disease.

 

[Jrzygrl]

I'm hoping that the doctor merely stated 6-12 months in an effort to hasten the disability process. We found that fighting to get all the required paperwork completed to be placed on disability was a lengthy process. I hope that your father gets the coverage quickly, but has a long meaningful time ahead of him.

 

[Mydad]

Thank you both for your reply...He is scheduled for the feeding tube on the 10 of this month and he does have a Bipap and uses that mostly at night.

 

[swalker]

I know the shock of reading that kind of information. Saying it is unsettling is a vast understatement!

For me it was very important to mentally separate the paperwork from the reality.

It sucks to have the diagnosis. The paperwork should reflect that so it is a smoother road to getting the benefits from disability, medicare, social security, etc.

But, the reality that we experience can differ from what is in the paperwork.

I pay absolutely no attention to prognostications about how long I will live and how fast or slow my progression will be. Instead, I focus on getting the most out of every day. Ok, the reality is "most days" rather than "every day". But I do try to do it every day

I hope you and your family will be able to likewise. I have found it to make a great, positive difference in my life.

Steve

 

[Firefighter58]

I agree with Steve one hundred percent. I could not believe it when I was diagnosed but now it is just part of life. I do not worry about all the talk and predictions, I just carry on with life.
Al

 

[Mydad]

We have not told my dad the prognosis....We feel it's better that he not know and he doesn't ask questions either. We have been living one day at a time some days rougher than others. My mom told me yesterday that he has fell twice in the last few days, hit his forehead and the back of his head. I called him yesterday to talk to him and to let him know he has to be very careful and not try to do so many things. This happened when he was bending down to pick something up and lost his balance. He started crying and I told him that I'm only saying something b/c I love you and care and want you to be safe. He still has strong legs, but his core muscles are gone and has lost movement in both arms, still has some in the left arm. My mom in the last few days has had to start feeding him b/c he gets too tired when lifting the utensils. They are going to the beach this weekend with some of our family and I think this will be good for him and my mom. I truly appreciate the replies and this forum it helps tremendously.

 

[swalker]

It sounds like your father is reaching (or has already reached) the point where being careful is not enough to prevent falling.

That is a hard stage to accept (at least it was for me). If he has reached this stage, assistive devices are necessary.

I found that once I started using a wheelchair the truly damaging falls came to an end.

Whether his next step is a cane, a walker, or a wheelchair, once he starts using the appropriate assistive devices he will likely reduce the number and severity of falls.

One thought that persuaded me to go ahead with the power wheelchair was that I would eventually need a wheelchair, so why not now. I have had the wheelchair for over 2 years now and am so very glad I got it when I did. Getting it was one of the best decisions I have made.

I believe the injuries we suffer from falls are a major contributor to progression. We just don't heal like we used to.

Steve