the good, the bad, the ugly

[gooseberry]

Steve went for his regular VA appt on Wednesday. Pft showed a breathing decline but he had maintained his weight. Pulmo concerned because his breathing has been pretty stable since February and Steve has noticed a difference. Steve has felt a lot more weakness in his legs and his feet slap the ground when he tries to walk. Mostly he is using his chair.He is getting a headrest with a strap to hold his head up.


Today he went to clinic at USF. Speech pathologist noted tongue fasciculations and loss of strength. Eating has been tiring him out. He is talking about and starting to use the peg for nutrition much more.

On the one hand I feel thankful he is doing so well but on the other hand I know things are changing. He admitted today that things are nosediving, he can feel it.

Round and round we go waiting to.see where this latest change will take us.

 

[Green Queen]

Steph, one thing I love about Steve is that he's very in tune with his progression and keen to adapt.

How do you think Julien will handle the tube? Connor does NOT like change at all.

Thinking of you,

God bless, Janelle x

 

[affected]

On the one hand I feel thankful he is doing so well but on the other hand I know things are changing. He admitted today that things are nosediving, he can feel it.

Round and round we go waiting to.see where this latest change will take us.

He is doing well, but we know the monster is insidious and relentless.

 

[chally]

hey steph, that's just how i feel. i can tell when i go down a notch and have to regroup. your right it doesn't stop. wish my sah grant would move along as fast as the nightmare. love ya chally

 

[gooseberry]

Chally your regional pva office may be able to help if it is housed with the va office. I used our regional pva office and got things done a lot more quickly.

 

[Nuts]

Steph, it's so hard to hear about Steve's progression. Praying for things to stabilize, or at least slow down.
Becky

 

[cheerleader]

Steph, thinking of you and SO glad your house is done and ready for whatever lies ahead. Hugs.

 

[gooseberry]

I knew his legs were pretty much done. There is so much atrophy and he has been struggling to stand. I thought he was struggling with his breathing and he had been but mostly doesnt want me to worry. But you can see it. His respiratory rate ran mid 30s to 40 on Friday. I have had to adjust his trilogy twice in the last few weeks. I really wasn't prepared to hear the tongue fasciculations. What we heard though was the declining respiratory function goes along with more bulbar symptoms. Since als patients don't feel the tongue fasciculations the speech pathologist said they also may not feel the trapped or early penetration/aspiration of food and liquids. So he has another barium swallow modified.

Wednesday at the va they readjusted his pwc and showed him how to use the tilt to keep from sliding out. He was reclining his back to help his breathing but he was sliding down.

I think everything has finished in the nick of time.