How to best help my pALS in early stages?

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Look forward to your update :)

How did the boys trip go???
 
Hello -- It's been a while as we are still kinda, sorta, working our way through this stage. We were also away on a family vacation and my hubby spent a few nights with my oldest son looking at colleges. So, it was back to reality last Wed.

We are using the Pride Go Chair for him to get around and a walkers the rest of the time. He hates the walkers! We are putting in a stair lift and ramps/lift in the house and looking into getting a van or converting my minivan to one that he can use.

We bought new socks and he is going to go through his clothes this weekend to get rid of stuff that no longer fits or works.

Some of the best advice that I got from y'all is to help him make his own decisions. I am struggling with how long it's taking him to make them but I know he is struggling emotionally. I made him agree to speak with a therapist who works with Acceptance and Commitment Therapy for grief and loss. I hope it helps him process all of this. He is having a lot of emotional trouble (obviously).

I will be back soon, I just wanted to check back in. It's been a tough few weeks for us. Hope you are all hanging in there.
 
Take your time, and thank you for updating us. You are doing brilliantly :)
 
Good to hear from you! One foot in front of the other. Hugs!
 
My husband, Jesse, gets great benefit and a sense of independence from the use of a bidet. Best wishes to you. Richard
 
Okay so here are some more tips:

1) The Pride GO CHAIR -- a local organization let us have one and it is great. My husband is in the process of getting his "souped" up w/c and until we get that, this is working well. Why? Because we can take it apart and put it in any car and carry it into any house. The heaviest piece is 37 lbs. and it takes about 3 min. to disassemble and assemble.

2) Speech path suggested a voice amplifier for work and conserving his tongue muscle by thinking about how to use them -- for eating or talking. For. ex. she suggested that if he is going out for a social time when he will be talking that he conserves mouth energy for talking and eat a high calorie shake or smoothie before we go, talk and socialize and then have cheesecake (soft, yummy calories) for dessert.

3) We moved our bed closer to our bath so that it's a short walk...

4) I am constantly blown away by how much energy conservation is needed and I am learning so much.

Best to everyone!
 
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