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rjpaul

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Joined
Dec 8, 2013
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Reason
CALS
Country
US
State
PA
City
Bethlehem
Hi All,

I am new here and looking for people who have had a similar experience as I have. My father was diagnosed with ALS in June 2013, and has had a somewhat rapid progression of the disease. At the time of diagnosis, he had lost function in his left hand and was walking with a cane, but was still able to drive and work. By late October, he was having dizzy spells, needed assistance getting in and out of the car, had lost at least 50% of the function of his right hand, and was told to start using a wheelchair.

In October, he fell on his way to a doctor's appointment and received multiple skull fractures and brain bleeds, the largest of which was evacuated with emergency surgery. After being in the ICU for 2 weeks and a long term acute care facility for a month, he was just moved to a nursing home this week. His ALS doctor called him a miracle...he didn't expect him to wake up. At this point, he is (FINALLY!) receiving OT, PT, and Speech. He has lost his core strength, most of the function of all of his limbs, and can no longer eat by mouth (he was eating a normal diet before the fall).

My questions are: Has anyone else on this forum had a similar experience? Can I expect him to regain any function in his limbs, core strength, or the ability to eat, or is what's gone gone? I've tried to do research on brain injury in ALS patients, but all that I can find is a possible causative link between the two, and nothing on our present situation.

Thanks!
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
Rj,

That's a double whammy! So sorry. I haven't heard of PALS re-gaining losses. Generally, when we lose a limb or an ability to do things, it's gone for good. But, given your Dad's particular circumstances, maybe he will be the exception.

Personally, I hope and pray for a plateau - I don't think I will re-gain what's been lost, although my breathing has improved significantly and unexpectedly. ( I had pneumonia which cleared, but breathing improved to beyond pre pneumonia levels)

Don't lose hope... Being guardedly optimistic can't hurt!
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Welcome RJ;
If your father had never had ALS and had those injuries the caused him to be in bed that long he would have been almost as weak as he is now. Our muscle atrophy at an amazing rate when not used, and I have worked in a trauma ICU and have seen first hand how debilitating it is. That is why we now get our open heart patients, and other surgical patients up the very next day after surgery. Head injuries of course are a different beast. So having said that, we also know that head injuries increase the progression of ALS greatly, so it is hard to say what may happen. But I agree with Elaine that you should keep hope, and give your father a lot of encouragement, and support, and if you believe in God, prayer helps.
Paulette
 

Tx Daddy's Girl

Distinguished member
Joined
Jun 2, 2013
Messages
137
Reason
Loved one DX
Country
US
State
Tx
City
Beaumont
My dad also has rapid progression and recently fell causing a brain bleed. He, too, was in a hospital for 2 weeks but was sent home on hospice because he lost his voice and almost all ability to chew and swallow anything but liquids. It sent his ALS in overdrive. We are living day by day
 
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