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 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]
When I was pregnant I spoke to my doctor about the possibility of natural childbirth. He spoke to another doctor who had a patient with SMA and she went into regular labour but after twenty-four hours the labour had not progressed. The muscles were not strong enough to do labour the ordinary way. So he said I could go into labour if I…[Read more]
Hi Crystal. I had no problems with my pregnancies, but I was a healthy 135 lbs, no breathing issues. A friend of mine with SMA 2 is very petite and so had to have her baby delivered early, as there was no room for him to grow. It was difficult, but both came through ok, but her baby experienced some developmental complications as a “preemie.” Do…[Read more]
Your question is not so random. Lots of people with disabilities have thought about having children, including people with SMA. I had two children in my early 30s (I have SMA type II). Both were born with C-sections. I had lots of support in their younger years due to my husband’s active involvement and also extra staffing that was available under…[Read more]
I’m with you, Halsey. If none of my attendants could come, I would rely on my husband, but if he got sick or injured, I would be in dire straits.
Everyone is just trying to keep things in perspective. I’m sharing information with my attendants as it becomes available – such as the extra effort our public transit is making to keep services sanitized.
I am trying not to overreact but I still want to be sensible regarding universal precautions. I have downloaded videos showing the proper way to wash one’s hands which I will show to my various attendants. (Nine different people are in and out of my house during the week, each for “mini shifts” ranging from one hour to four hours and three…[Read more]
I really don’t like carrying spills with me on my clothing. It minds me of my childhood days in an institution where people didn’t really care how you were dressed or what you looked like. I put a towel (not a bib) on top of my chest whenever someone is helping me to eat, brushed my teeth etc. Then I remove it afterwards. I’ve never had to worry…[Read more]
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