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I went in early before work to put up some pictures and replace the blades in his electric shaver. I am glad I went in. He didn't remember that i told him that I would come in on Thursady morning before work.. I think I have to write on the board to remind him when I am coming in. Memory prompts...

Well.... it was good and it was bad. The good part that we had an apportunity to engage with Physio and Managers. The bad part is that they did not give Tony what he wanted which was structured physio exercises. He kept writing out on his word board. ' so no ROM?' over and over.

So .. this is where it stands today with Tony's quest for ROM and stretching therapies. The rehab

Ok not one word from the Palliative Manager today. Can that be bad news??? i don't know ... Tony and I had our regular Wednesday after work date... watching Season 3 of Hero's. We started watching this when he first got sick ... from the video store... we've been hooked ever since. :) We are one season behind but it works for us. Tony's hospice worker is back from vacation and I am very glad of that.. she is good for him and I think he's been missing her.

Many things have happened in the last few months that have been frustrating. The Palliative Care staff said that they didn't have time to do ROM exercises for Tony. I had no where to turn I know that it takes a long time to do personal care etc. but he is still in pain and he understands the importance of these exercises. I sent a letter to VIHA patient quailty care dept. stating that in their own mandate (which I found online) for Palliative ALS patients that exercise is important. I got a call within two days of sending the email.

My heart breaks every time I see Tony ... it was a few short months ago that he could sit up and move his body. Now he is totally bed bound... well they do still put him in his easy boy chair but he cannot move on his own.

[QUOTE=Andy2020;107812]Hi Linda! I was told by a researcher to not even deal with ALS 'Specialists', but to educate ourselves and work with my Dad's General Practicioner and educate him about ALS.[/QUOTE] Hi Andy, I lost my message to you so I will send another.

[QUOTE=Andy2020;107812]Hi Linda! I was told by a researcher to not even deal with ALS 'Specialists', but to educate ourselves and work with my Dad's General Practicioner and educate him about ALS.[/QUOTE]

I post this as a consideration for those that can't afford to purchase a lift and for those that don't have access to an ALS Society loan closet. We were fortunate to have one donated to us. If that did not happen we were looking at over $10,000.00. Totally ridiculous. I did a lot of thinking about how to build an affordable one before we were blessed by this donation. Anyway, what I would have done is this: Use 3 inch 'I' beam, we can purchase a 24 foot length for $110.00

Last night I went to bed as usual with my BiPap machine operating, right shoulder strapped and for the first time,a hand and arm brace. That was only made for me yesterday by my OT, all seemed well and I felt comfortable and look forward to settling down to a good night sleep. At 2:30 AM I woke up to go to the toilet and felt like I was totally constrained, couldn't help myself to get the BiPap mask off, because of having the right hand in the new arm brace, and for the first time had to get assistance to remove the BiPap.