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Mydad

Member
Joined
Apr 12, 2017
Messages
26
Reason
Loved one DX
Diagnosis
03/2017
Country
us
State
TX
City
ooooooo
Hi everyone,

My dad went to his 6 MONTH ALS clinic follow up apt last week, and my mom and him were given horrible news. He was unable to even register on the breathing test so they weren't able to see what his FVC percentage was. He is unable to speak now only my mom can understand him, arms are almost gone and legs are getting weaker. The neurologist told them that he probably only has 3 months left to live and it was time for Hospice to come in. We are very grateful that the Hospice agency the ALS clinic uses will allow him to keep his BIPAP and PEG tube. We are completely devastated by this. My mom told me that they talked that night and said they were not going to live like he only had a few months left and that no one knows how long he has and he didn't feel like his time was coming. He isn't on his BIPAP 24hrs yet, so I don't understand why he made this prediction? The ALS CLINIC here is absolutely wonderful. They gave them a loaner eyegaze until his comes and are going to give him a wheelchair also. He was just fitted for his own, but they are stopping that process due to what the Neurologist said. Has anyone been given this type of prognosis and was it based on his breathing?

Thanks!
 
I would not stop the wheelchair process whatsoever based on the neurologist's prognostication. The FVC is not all that, and not every clinic has the equipment to accommodate measurement for bulbar weakness. Not knowing what the prediction is based on, I can only say many have been proven wrong.

That said, it doesn't always happen that 24/7 BiPAP needs occur before death. As you say, how the PALS feels is usually a better predictor, so I'd uncancel the wheelchair cancellation. If the neuro doesn't want to play, you can find another, or a PCP or PRM, that will.
 
Hi Mydad, I am so sorry to hear this. Our neurologist made a similar prediction at our ALS Clinic visit last month and it was such a difficult thing to process.

One thing to keep in mind is that if you elect hospice right now, Medicare will no longer cover the cost of the power wheelchair (assuming your dad is covered by Medicare). MY PALS was also in the process of getting a chair but we felt that the benefits of hospice where we live outweighed having a wheelchair he would barely use.
Perhaps if the wheelchair had been ready in one month we would have waited for the wheelchair before going into hospice, but we were told it would still take 3 months of waiting.

Wishing you lots of strength during this difficult period.
 
I'm sorry that this is all so rapid.

While they can't truly predict with accuracy, you are aware your dad is very rapid progression to be where he is at only 3 months after diagnosis already.

I suspect he didn't get a result on breathing tests more because he couldn't form a lip seal which is really common and when a partial seal can be formed it often messes up the results.

However, I do think that if your dad wants hospice and the loaner chair he gets is quality, it could be worth cancelling the chair order, but it is really for them to weigh up. We can't say from a computer screen what the right choice is, they have to make this on their own gut really, because no one (not the doctors and not anyone here) can make a definite prediction. What we have learned here is that this disease the only thing predictable about this disease is how unpredictable it is!

Having said that, rapid progression is really something different to deal with than those who have slow progression. Live every moment right now and take every comfort measure offered!
 
Thank you so much Tillie! Yes we know how rapid it is and we are blown away by it. I'm sure it was from him not being able to do the lip seal. It is going so fast and they have done everything they can with getting the PEG TUBE and BIPAP, but this disease is not slowing down at all. Thank you for your truthful and kind words, they mean so much!
 
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