Tracy Odell

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.

I have a few:

<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]

Hi Crystal,

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]

What are the benefits expected for older adults with SMA 2 (50+ years)?

Do you have to take it every day for the rest of your life?

What is the expected cost?

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]

I am getting an error message…

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Cloudflare Ray ID: 566aa2e8ccaa71c5 • Your IP: 70.49.199.240 • Performance & security by Cloudflare

It shows what one person can do!

The U.S. Access Board is undertaking a study with the Transportation Research Board to assess the feasibility of wheelchair restraint systems on aircraft, and will make their conclusions known this fall.

It is totally possible to design aircraft so that a person can fly safely while sitting in their own…[Read more]

I stay in the kitchen on the tile floor for twenty minutes or so until the snow melts off my wheels, and then the tiles get mopped off. If I’m in a hurry, though, I will get them wiped off with a towel.

There seems to be something wrong with the link. I get an error message saying “Access denied. This website is using a security service to protect itself from online attacks.”  I also tried to link to it directly from the article and got the same error message. Did anyone else have this problem?

Thank you for sharing about your service dog. I don’t have a service dog but I imagine it is a big decision. Watching your video and seeing your ingenuity and picking things up maybe think that we should have a series of videos on this forum about all our tricks for doing everyday things. There’s a lot we can learn from each other! I haven’t tried…[Read more]

If someone has hurt themselves say with a serious back sprain and the call in sick, I don’t let them return until they produce a doctor’s note confirming it is safe for them to resume their normal duties.

But colds or flu – I let them come to work if they feel up to it. Because I can’t reach to touch taps, doorknobs, etc. I don’t pick up anyone…[Read more]

Hi Brianna,

I like to have several backups when I’m in bed. I’d never at home alone if I’m in bed. I feel too vulnerable.

I use a CPAP machine at night and recently was recommended to go to a full face mask. I found out that it muffles my voice and made it impossible for me to call loud enough to be transmitted by the baby monitor so my…[Read more]