Thanks so much Karin. It seems a person can get used to anything! At first disabilities are shocking, but down the road you get used to the changes. And at least MS and CIDP can be held at bay overall. Happy New Year and all the best to you.
Hi Karin of Toronto- thank you for voicing your concerns about smoking marijuana - I only rarely do it- and only when I'm super done with the pain. Ordinarily, Advil helps- and I keep moving. I lived many years in Toronto too. Yonge & Eglinton mostly and later to Avenue Rd & Wilson. Where are you?
Hi Cathy- I've not been on the site much. We've lost so many people. I use my walker in my apart. but get tired and out of breath in the community. I'm getting a bipap machine on Monday as my HO2 during the night is at 84- quite low and daytime is 95. Hopefully it will improve my oxygen at night so my days are better. I had several falls last Xmas. I have severe osteoarthritis in both knees and a congential heart defect, none of which help my weakness- but I keep pushing. Don't plan to stop until I do. Glad to hear you're getting a PWC it'll save you energy. Kari use to be on the site all the time. Her father had ALS, but then her daughter got sick with some kind of cancer and her father died shortly after that. I suppose it was time for her to move on as I suppose at some point most spouses must come to. I've been lucky my son's boss' father died a few years back so I got his PWC and hospital bed. I'll be in touch after Clinic- KB
Sorry...I just saw your message from 10-12-12....I don't log on here much anymore. Both my legs are affected and my right arm/hand. So far ok on breathing and swallowing. I had a couple of bad falls a week ago and use my walker all the time when up walking now. My Sis-In-Law had her deceased Mother-In-Laws Hover round pwc in storage and she has let me borrow it till I get my own pwc. I use it in the house and my scooter when we are out. Sorry to hear about your breathing and still no diagnoses. Since you have a pwc I assume you also are having trouble walking. You would think they could find out if it is ALS or not by now. Keep me updated on your clinic visit. I am not sure who Kari is?
I bought a used scooter about 3 or 4 months ago for $50 and spent $200 on new batteries so I only have $250 invested which is ok. It has been fantastic and works perfect for me so far. My symptoms started with right ankle weakness 2 years ago and I can still walk with the help of my AFO's. My next clinic visit is next month and I am going to start the process of getting a power wheel chair. I have read that getting the pwc is a LONG process so I thought now would be the time to start it.