Tracy Odell

I have not flown for over 10 years. Fear of having my chair lost or damages is a significant reason, but did not on its own dissuade me from flying. The last straw was getting hurt by being transferred from the various series of wheelchairs to the airplane seat, and being in pain in the airline seat because it did not have the postural supports…[Read more]

I recently have been told to eat more protein. Not sure what is the best amount given SMA and the inability to gain muscle mass. Here are some tried and true suggestions:

• Hemp hearts are very high in protein, and if you buy them ground up they are easy to chew in small spoonfuls. I usually take a teaspoon once or twice a day between meals. To…

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Welcome, Rachel! You should enjoy being part of the forums. I know I do!

From what I have heard, the Spinraza injections make a difference.

Tracy Odell from Toronto, Canada, SMA II and 60+

• Don’t forget to pack your charger.
• Check that the outlet you use for your charger in your hotel room stays on when the room light is turned off. Otherwise, you will find yourself running out of power and wondering why.
• Remove your seat cushion and keep it with you – either sit on it so your back is at a better height compared to the seat…

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I want to respond to your comment about possibly losing your ability to create art your way.

Judith Snow lived with SMA 2 until the ripe old age of 65. Judith devoted her life to creating community around things that she believed in and wanted to participate in. She travelled throughout the U.S, Canada, Scotland, Australia and other places…[Read more]

Hi Brianna,

You have captured illness anxiety quite well, and help us understand the repeated traumas (or close-calls) that bring you to where you are now. Thank you for that.

I  have the opposite perspective. I think because I was forced to live in an institution (i.e., hospital) from the age of 7 until I signed myself out at 18, I firmly…[Read more]

I have used a thin towel rolled into a rolled donut shape so my ear can “float” in its hollow centre, off of the mattress. You will need to experiment with different sizes and thicknesses until you come up with the comfort zone that works for you.

Wow! I can certainly relate!

Hi Brianna,

Great topic! It’s so true that when sitting in a wheelchair, you don’t get the same kind of casual touch as you would if you were walking around – somebody just bumping into you or nudging you or giving you an affectionate hug. I don’t let people hug me unless I have given them a brief lesson in how to do that without making my head f…[Read more]

Hey DeAnn – Getting new wheelchairs has been a nightmare for me. It seems every chair is worse and worse. Even sitting 1 cm higher or lower can mean the difference between being able to do something or not be able to do it. As I have gotten weaker over time (I’m now 60+, SMA 2), every millimetre can throw me off balance and reduce my…[Read more]

I love my remote-controlled outlets! I have them plugged into lights right now, which is great because if people forget to turn them off before they leave, I can do it myself and save a little electricity. Also, if it gets dark before people arrive, I don’t have to wait for them in the dark. At Christmas time I had the Christmas tree lights…[Read more]

I haven’t flown for almost 20 years, because the last two times I flew it was too physically painful. It’s hard for people to pick me up and get me over the seats, and my shoulder got hurt in the process. That combined with the inability to use a washroom for hours before and after the flight to allow for onboarding, deboarding, getting my…[Read more]

I agree, sometimes there is nothing more to do than graciously accept the gift. Other times, not.

I usually don’t think of the best response until a day or two after the embarrassing incident occurred, and so I admire others I know who can come up with a snappy comeback in the moment.

So here’s a funny true story: a group of us were out for…[Read more]

In my 20’s, I could type up to 100 wpm, both hands, all fingers flying. I use a PC. Over time as my physical abilities changed, I made use of macros and cut & paste and shortcuts to save keystrokes. At 30, I got Dragon Naturally Speaking so I could type longer passages without my fingers giving out. Typing by hand was possible in short bursts, and…[Read more]

Hello Izzy,

I would like to learn more about the causes that you are involved with. Are they disability related advocacy or based on other interests?

I am in Canada and am active with a provincial organization working to advance the rights of people with all sorts of disabilities http://www.cwdo.org.

I just realized I wrote, “If my arm “falls” off my arm last” instead of “If my arm “falls” off my armrest” (thanks Dragon) but I’m glad you realized what I meant. In response to Ryan’s question about how I manage having a caregiver on-call:

In Canada, we use the term “attendant” rather than caregiver consistent with our history of advocat…[Read more]

I have SMA type II and just retired last year at age 60! (Quite a milestone when your parents were told you would not live past the age of 12!) My husband will be working for a few years, still, and I share the paranoia about being home alone for hours on end.

If my arm “falls” off my arm last, I am unable to reach a switch to change my position.…[Read more]

What a great article! It takes me back to when I was Keyrin’s age and having the very same thoughts. I limited myself until I met a very outgoing person who helped me realize that I did not have to apologize for having a disability. She was happy to have me as her friend, her work colleague, and community badass advocate. It was a real turning…[Read more]

Glad you meet you. I’m new to this forum. My first full-time job was absolutely amazing. I was given a lot of autonomy. At one point, my job involved going all across Canada to help set up literacy programs. I was young enough that I was unaware of all the things that could possibly go wrong – and when things did go wrong – it turned into a pos…[Read more]

I’m Tracy and I’m new to this forum. I live in Toronto, Ontario, Canada. I have SMA Type II as does my sister. I have just turned 61, and sist is 65 now. We were originally predicted to live to 12 only, then 18, then 30 before doctors quit trying to predict our life span. We both lived in an institution for kids with physical disabilities. I was…[Read more]