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Old 11-23-2014, 07:29 PM #12 (permalink)
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Nuts Nuts is offline
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Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I lost a loved one to ALS/MND.
Posts: 2,458
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Nuts Nuts is offline
Extremely Helpful Member

Nuts's Avatar
Join Date: 2014
City: Littleton
State: North Carolina
Country: US
Diagnosed: 01/2014
Interest: I lost a loved one to ALS/MND.
Posts: 2,458
Nuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant futureNuts has a brilliant future
Default Re: Wake up call and hard choices

Thank you all for your supportive words. I know that we each have our own set of challenges, but it's nice to be able to vent. Tillie, I've thought of your situation with your brother many times over the past few months; I guess I knew this would happen eventually, but just couldn't face it without some event to force it on me. I'm fortuante to have a sister who will step up---not everyone does. We're planning the move some time in January. In the meantime, her meds have been adjusted (I JUST got her into the Duke Movement Disorder's Clinic, which is in the same building as the ALS Clinic--hate to move her from there) and we're doubling up on home health: my husand's physical therapist will start working with mom also this week and we'll be adding her to his OT's schedule. The speech therapist has been here for her--my fingers are crossed that hubby doesn't join that party for awhile. I asked about an aid to help her out with showering until we can get her stability back and the PT asked responded that "they" would ask why the family can't do it. LOL---I asked him if he remembered evaluating my husband. Helping shower and dress two other people first has me almost forgetting that I haven't brushed my own teeth yet! I think they'll be coming through.

Things have been a little hectic...

Have I mentioned that our master bath was gutted last week? I'm relieved that they were several weeks behind schedule--I can't imagine having had it done when hubby first came home fromt he surgery. At least now he can use the walker and get down the hall to mom's bathroom, and when it's done we'll have a wet room shower and accessible sink. I'm having to give up the second sink in exchange for the external door the VA wants in or near the bedroom, but I see advantages to being able to come straight in to the bathroom (we live on a lake).

On a very happy note, my sweetie's third clinic appointment was this past Tuesday and his MIP and FVC numbers were both back UP! He slipped from 80s to 60s last quarter, but his MIP hit 100 and his FVC was in the high 70s. Breath stacking DOES work (at least at this point). That news helped soften the blow about driving being out unless he passes a comprehensive asssessment or goes to hand controls. As you might guess, he's planning a few more weeks of PT before trying again for the full enchilada. I rather expect the new van to be going back in for hand controls, but one thing at a time...

Right now the good is balancing the bad, for which I am grateful--as I am grateful for this group. You all amaze me every day.
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