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starente15

Senior member
Joined
Oct 27, 2014
Messages
809
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
Good morning everyone. We have our second clinic visit next Friday (was supposed to be in February but was moved up due to what seems like quicker progression).

I was wondering if there were any questions I should be thinking of. I go with a list to ensure we get as much info as possible but it's overwhelming with the speed-dating approach.

Currently my concern is that my dad may have the beginnings of leg weakness. Would the docs advise when it's time to start looking into a wheelchair to be ready for when you need it or any changes that need to be made at home to accommodate progression of muscle weakness? Not sure what I should ask around this. As a side note, both of my parents are in denial that things are changing. He fell twice in one day but it was due to the rug, etc. My brother has noticed that he seems weaker when walking and that he's not picking up his feet enough and may trip soon.:(

Thanks!
Star
 
Falls are dangerous. Let your clinic know what s going on and my order the PT to evaluate his needs. It can take up to 3 months to get a power wheel chair.
 
No questions are off limits--if your parents will allow you to ask them. Definately describe the falls. Do you see an OT and PT during your clinic? We do during ours, and they are great about picking up on denial and gently but honestly addressing it. Mention that his legs seem weaker--they will no doubt have him walk for them and do strength tests. By all means ask about the chair, and ask what other equipment you can get started on now. You don't have to wait for them to bring it up. Have they had an OT out to evaluate the house yet? That's extremely helpful, and if it hasn't happened yet ask about it. They will point out potential hazards and make suggestions for modifying the house.

Be sure to take notes--otherwise you'll never remember everything!
 
We haven't had OT come in yet but I believe they need to get there. Just got a call from the clinic that they need to cancel this months due to an extreme circumstance where the doctor needs to be out and we can't go until the end of February now. This makes me extremely nervous!
 
I would make of list of all the changes. I would be very objective. That way when you go you will have list to present with out emotion just presenting the facts as you know them. My husband"forgets" to mention things he doesn't want to think or talk about. I bring them up. I figure that is my job.
 
I WIIL be going to my second visit February 5th. I am positive my arms, legs, and hands are a lot weaker. My breathing has gotten much worse and I need to discuss these things. It is VERY difficult for me to want to dodo because I do not want the machines and aids - I just want to be normal. My wife is insisting that through nutrition she can make me better, I want her to be right but know the reality of this. I understand your parents.
 
Tripete, you might discuss with your wife that she can focus on the nutrition side to support the equipment side of things. Both work in concert. Since there is a lead time for some of the things you are going to need, you might want to chat about that strategy before the clinic visit.

I understand your antipathy toward "machines and aids" but I imagine you use at least some mechanicals like washing machine, car, stove and such, no? The idea of BiPAP and wheelchairs is similar -- technology does the heavy lifting for things that are hard so you conserve energy for the more human things. A BiPAP supports your lungs as optimal clinical nutrition supports your cells, blood vessels and organs.
 
I understand the necessity if the "machines and aids", and will use them, none the less it is incredibly difficult to picture ones self so helpless. It can make it difficult to face the truth like falling, tripping etc. All of our new "symptoms" need to be discussed each time we visit the Dr, yet I can sympathize with her parents who are struggling with the ramifications of this disease.

I said it before - This sucks!
 
Star I sympathize with you and your parents. I simply wanted to try and express to you what they might be going through. I appreciate how you are taking care of them and am sure that, inside, they do also.
 
Totally understood that Tripete :) I can't imagine what it's like to be in a PALS' situation. The clinic visits just make it more real. We try to act like our new normal is normal but inside its just constant anxiety and fear of the next thing. I'm sorry you're facing this situation. I see you're newly diagnosed. We've known since October and it's still a daily struggle emotionally.
 
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