My sister, Sandra Carpenter, who also has SMA 1 passed away this week at 65 years of age. She was four years older than I and I always looked to my big sister for advice. I will miss her terribly. Sandra had a rich and rewarding life, leaving behind a marvellous legacy supporting the Independent living movement in Ontario and beyond, and was […] View
I have an iPhone 6s. I had to replace the battery once – that is how long I have had it. It’s a small iPhone – not the newer ones with the bigger screen. It works well for me because I cannot reach the top of the screen as well as the bottom of the screen without getting help to move my whole arm or moving the phone up and down. The…[Read more]
Yes… I think so. Let me know if this meets your needs:
Hydrocephalus Canada has introduced a new virtual assistant called Notes2Self to help youth with any kind of disability to balance the transition to independence, take ownership of their care and all other aspects of life.
I interview people on Zoom now. Then if they don’t turn up I can do other things until the next person is scheduled.
I try to talk them out of it: “Are you sure you want to come all this way for a 2-hour shift?” “Even in the winter?” This gives them the opportunity to self-select out so we won’t waste each other’s time.
Some people I know got together a few years ago and discussed this topic in the privacy of their living room. What a lot they learned by comparing notes about how people did what! I found out there was such a thing as a female urinal, and various other methods for positioning oneself to be able to…[Read more]
I do not go to live shows anymore. I pay the same price as everyone else, then I have limited choice about where to sit because only a handful of seats are accessible. There is only room for one person to sit with me, like you said, so anyone else in my group has to sit elsewhere. But the main reason I don’t go is that when people get excited – a…[Read more]
I, too, studied to be a teacher – planning to teach English and art.
After being grilled by the Dean of special education, I was able to help them see the different ways I could work with students by using an overhead projector, having students write on the blackboard, rearranging desks so that I could get to each student at their seats, and a…[Read more]
I was on that medication for a while. The side-effect that was most noticeable for me was double vision. I was switched to pregabalin and am not having side-effects. These meds did help, but I still get a lot of pain at times.
<span style=”text-decoration: underline;”>Too Late to Die Young: Nearly true tales from a life</span> by Harriet McBryde Johnson, is her memoirs from growing up with SMA in the US. Available from Amazon.
<span style=”text-decoration: underline;”>Being Heumann: An Unrepentant Memoir of a Disability Rights Activist</span>, by Ju…[Read more]
I have recently put my wishes in writing and shared it with my family and my doctor. That way, if I am not able to speak for myself they know that I do not want a DNR, ever. I did make an exception for COVID-19 if I go with palliative sedation: I want a DNR in that instance.
This way people will know what I wanted and one family member will not…[Read more]
What about a podcast on access to hospital care, including ventilated care for people with SMA?
Some areas are putting protocols in place which would put us low on the list for interventions if hospitals were short of space or equipment due to COVID-19. Our family members who help us may not be allowed to be in the hospital with us to…[Read more]
When I retired, I made the deliberate choice to stay at home as much as possible during the winter. I only went out for important medical appointments and delayed the rest of them until the spring. Christmas Eve enticed me to go to my sister’s where several family members were gathering.
So the COVID-19 crisis has made it easier for me to stay…[Read more]
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