Martin Seekings
Forum Replies Created
-
I’m just opting out of email follow-ups. I’ll still read the website
-
I find that I sleep surprisingly well, averaging around 10 hours in bed, although I have great difficulty changing position, have a restricting BiPap machine and cannot get up without help to use the bathroom. Using a male urinal while lying down (or sitting up, for that matter) is no picnic, and I imagine it’s even worse for women. On the rare occasion that I need to get to the toilet at night, I use Amazon Alexa to Drop In on my wife in the next room.
Thankfully, apart from occasional cramps or stiff joints at night, so far (at 2 years in) I do not suffer from chronic pain. Sometimes, if I’ve had a disturbed night, I will take a nap in my lift chair. As another poster commented, it seems that a bedtime dose of Riluzole along with 5mg of Melatonin makes for a good sleep. Typically with this disease, things change all the time and we never know what’s coming next.
-
They won’t get it in Canada either. It’s been approved by Health Canada on behalf of the Government of Canada, but it could be months before it’s actually available on prescription. We’re all waiting with bated breath
-
I’m surprised to hear you were able to get it over the counter in the US if it hasn’t yet been approved by the FDA, although I’m not surprised at the cost.
In Canada, we’re waiting for provincial approval of funding for qualified patients. (I had to do a lung function test before getting Radicava.) I’ve been told it will only be available with a prescription from a qualified Canadian neurologist.
-
I would guess around six months, although that’s just off the top of my head. I have an ALS clinic appointment in Toronto on July 26, so I hope to find out more then.
-
I understand it will take several months for the Canadian federal government to finalize arrangements with the 10 provincial governments for distribution of the medication. As of now, I don’t think there’s anywhere you can get your hands on it outside of a clinical trial. Probably the best source of information would be one of the Canadian ALS clinics.
-
Hi, Steve and Duane.
I use a hospital bed, courtesy of the ALS Canada Association loan pool. The mattress is vinyl-covered foam, with ROHO inserts at hip and foot level. I also have ROHO cushions on my wheelchair and lift/recliner chair. They are great at spreading out your weight and avoiding pressure points, and are available in many configurations. Check them out at roho.com or on Amazon.
I use 36×82 inch fitted bott0m sheets, and regular twin size top sheets. I also have a fixed pole and and a floor turntable to help me transfer between bed and wheelchair or commode.
Martin S
Ontario, Canada