Recent content by Flyby

Hi I have been off the forums for a long time.I think we were beside each other at one of the Nanaimo meetings but when I turned to talk to you you were gone. Myerror, I should have ta;led to you first or said hold on 'cause I needed to catch someone else. Will you be at the walk/roll on...

Sounds like life is tough Elaine but you are tough too. Hang in there and choose to be happy. It helps me Hugs

I used to go up and down on a pretty regular 3 month cycle. Now as the disease progresses the edges are blurring and along with the cycle there is an unsurety about individual days as well. I definitely wipe out for a day or two if I overdo and get fatigued. My neurologist says that there a...

I have cold feet and lower legs whenever I get cold. They can stay that way for several hours. It started with the feet but as the area of ALS involvement increased so did the cold. I also sometimes have burning in the feet when the legs are up. Think bed or in my big chair. Dr. says I just...

Good doctors here on the Island and if you are in my area the NRGH pulmonary function people are great. So is the ALS team over at GF Strong Center on the mainland. Keep on it and don't be afraid to use the emerg if it gets too bad. Hugs Remember a short cry once in a while fills the glass...

Hello there islandgirl. I'm another one. Living the retired life in Nanaimo. I've been diagnosed for about 2& a half years and am declining slowly.Drop me a message if you would like. I'm known on here as Flyby as buttterfly (my favorite) was taken. hugs Always good to have and to give.

Thanks for all the suggestions. I have just restarted my passive ROM exercises so will see how that goes. My OT asked for a low air Roho mattress for me and it has helped a lot. The 20 degree swings at night seem to really help with the pain. It seems to keep the spine more supple i think...

Hugs and best wishes for a speedy recovery Elaine.

My occupational therapist says that putting anything ie sheepskin between the roho and the body defeats the usefulness of the Roho. I have removed min both on the w/chair and on my Roho bed. (only one sheet there.)

I'm having problems with recurrent back trouble since my nerves in my lower back have been affected by the disease. My chiropractor helped:cry: me once but it keeps on going out. He says it is due to the lack of muscle tone. Anyone here got any idea what to do about it or for the pain...

I have a spare roho cushion for accidents and I use it in my living room chair when my backside gets too sore.It changes the back position though which needs adjusting tho'. I'm thinking the gel cushion would be better height weise if it works comfort wise.

Sorry about the incontinence Bad Balance. I have it too, Got a Foley catheter but after3 mos of infections I went to the supra-pupic. No bladder trouble now. I only get ROMs 3 times a week. They are very fatiguing but I feel it if I don't do them.

Will it work for coffee? I'm using a sippy cup just like the grandkids now and it embarrasses me. One more thing to get used to.

Mine worked its way up my legs into my torso. Began to affect my bulbar area. Is now into my upper arms. Crazy the way it goes.

Got the drippy nose. My sensitivity to sound can vary considerably as can my irritability. I just put it down to being bi-polar but it is more prevalent now. I guess it could be both! Hard on my dear hubby though!