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  • Jane, you are so kind to everyone. I know you don't post a lot, but your help is invaluable. I'm missing Irismarie, Jane. Haven't heard from her now in such a long time.

    Can't do much but watch a movie in the collar, Jane. The pillow does do some good (thank you for that!).
    Sending you hugs and best wishes. Ann
    Jane, I re-read your excellent advice you posted in September. I wish I'd have begun then with the pillows, but have started now. I believe had I just used the side pillows, the curve would have been stopped in my posture. The team thinks I will be able to lengthen muscles, but they're new at this. I'm going to hope gravity helps as well as the collar once I get it. So thank you once again, as your post has proved to be such excellent advice.

    I hope you're doing well. God bless you.
    Ann xo
    Jane, I am very sorry for your loss of Lyn. When I began reading your posts, it was evident that you were caregiver for your sister. I'm sure doing the care for Lyn was a sort of nightmare having worked in a setting together. A sort of worst case scenario. I so appreciate your on-going support with the ALSA as well as here at the forum. To have experienced caregivers sharing and giving insight is such a blessing. Take care and God bless you,
    Hi Jane, thank you for your response yesterday to the tailbone issue. It sounds like you have a lot of experience with the wheelchair and our changes. I have a new coccyx pillow now, so the tailbone is very happy, and the sitbones are complaining. I have to laugh at how quickly they got in on the discussion. I'd bought a foam donut for the sitbones, but it hurts my tailbone. It must be due to the size and exactly where it hits.

    How are you and where are you in progression? I will hunt down your posts (or at least some of them) to see what I can learn. Ann
    Thank you so very much for all of your advice and support on the forum! I would be soul honored to be your first friend here :] Kay Marie
    Thanks so much for anwering Jane. I asked the casemanager from CCAC about this cough assist machine but she didn't know anything about it. We are in Niagara Falls and the closest ALS clinic is in Hamilton. I am not able to get Dad out to the car in his wheelchair anymore as he can't get down the 2 steps in our back room so my brother-in-law is going to build a ramp for him. The Occupational Therapist had been in and she had told us that she could get a ramp but it would be too wide for our back room. I told her that we will get someone to build one. In the meantime, I have just sent a letter to register with the ALS Society and I am going to talk to the Occupational Therapist again when she comes this week to ask about this cough machine. If our local CCAC doesn't know what Dad needs - I will have to bring him to the ALS clinic in Hamilton. Thanks so much and I'm sure you will hear from me again.
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