Thinking of you. How are things going? My dad just turned 81 this past Friday on the 11th. My family and I are planning on making a quick visit to Dallas to see my dad over Columbus weekend. He is hanging in there but has hardly and use of his limbs. Take care, Kim
Hi Nancy, So good to hear from you. I hate this damn disease. It takes everything you love. This mental piece has been really difficult. I had been hesitant to post because I really wanted to be sure it wasnt a one off situation. Unfortunately it isnt. I hope you and Toby are doing okay. Steph
Nancy - just read about Toby's fall and how frightening it was for you. I remember one time my mom fell, she was ok but I had to call my brother to help get her off the floor. It was a sobering experience. I think of you often and wish you were not alone in caring for Toby.
Sorry to hear about Toby's setback. I don't think there is a right or wrong way to handle things, you just have to do what you are able to at the time. I wish you weren't dealing with this by yourself.
Thanks for touching base. I miss my mom a lot but am overjoyed that her suffering has ended. How are you and Toby doing? I just recently started reading the forums again, so I'm not sure whats up with you two. I hope that you are hanging in there and finding the strength that you need as a caregiver. I know how hard it is. Be well my Pgh. friend. Trina
Nancy, thank you very much for your caring message. I too lost a long post I wrote last week, and I'm still not sure what I did wrong. I'm enjoying the beauty of this snow from inside my snug home. We'll have to keep in touch and share local "Pittsburgh" information. I never dreamed that I'd be in this situation, but I guess no one ever does. Again, thank you for reaching out to me.
oh, and I will add to this - as individual muscles die and waste, the surrounding muscles have to work harder to compensate. So if a PALS attempts to continue doing tasks that they find very strenuous, or fatigue them a lot, they are probably overtaxing the muscles that are trying to compensate for ones that have failed. This will then weaken those muscles hastening progression.
This doesn't mean a PALS should go sit in a corner and do nothing!
But, eg Chris would sit fatigued for several days, then go out and spend 5 hours straight using a brush cutter. He would say he felt so good for it ... he would then be useless for the next few days and the depletion in his hand and arm strength would be noticeable. Maybe if he had gone out for half an hour or so every single day, just doing a bit he would have been far better off. But he would do nothing, or do ridiculous amounts, and each time the result was days of high fatigue and less use of muscles