@tracyo
-
Tracy Odell changed their profile picture 1 week, 1 day ago
-
Tracy Odell changed their profile picture 1 week, 1 day ago
-
Tracy Odell replied to the topic Finally Approved for Evrysdi! in the forum Roche and Genentech- Evrysdi (risdiplam) 1 week, 1 day ago
Great news, Brianna! I hope it goes well!
-
Tracy Odell replied to the topic Meeting With Dietitian in the forum Adults With SMA 1 month, 1 week ago
I don’t find dietitians very helpful, either. They don’t understand about estimating the actual amount of movement we have (or do not have) compared to an average person.
For me, taking a lot of fibre turned everything into my intestines like cement. So instead of things moving along nicely, things ground to a halt. Maybe that will work, in…[Read more]
-
Tracy Odell posted a new activity comment 1 month, 2 weeks ago
Hi Julio,
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]
-
Tracy Odell replied to the topic My Mind Says I Can, My Body Says Think Again in the forum Adults With SMA 1 month, 2 weeks ago
Sounds familiar! Many people have benefitted from my optimistic purchases: back scratchers, adapted nail clippers, hair bands, turning sheets, shoes, sandals, sunhats… the list goes on.
I do like my iPhone though!
-
Tracy Odell replied to the topic Using a Planner in the forum Adults With SMA 2 months ago
Yes… I think so. Let me know if this meets your needs:
<h2>Notes2self </h2>
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.Notes2Self keeps an individual’s inf…[Read more]
-
Tracy Odell replied to the topic Maintaining Privacy with SMA in the forum Adults With SMA 3 months, 4 weeks ago
My sister (who also had SMA – may she rest in peace) used to joke that she doesn’t have pubic hairs, she has public hairs. So yes, privacy is a joke for us and yet is no joke, also.
I like it when people make a point not to look at my mail – even postcards, when they open them for me and put them in front of me to read. I always let them know tha…[Read more]
-
Tracy Odell replied to the topic Entering a New Decade in the forum Adults With SMA 5 months, 2 weeks ago
Way to go, Alyssa! Congrats! I can relate since I reached 60 not too long ago and I have SMA 2.
-
Tracy Odell replied to the topic Halloween Costume Ideas in the forum Adults With SMA 5 months, 2 weeks ago
Someone I knew made her costume as someone in “the electric chair”:
– metal kitchen colander on head
-plain shirt with her prison number printed on
-attach wires or cords you have around the house
– dark makeup under the eyes, etc.
-
Tracy Odell replied to the topic Discouraged Finding Caregivers in the forum Adults With SMA 5 months, 3 weeks ago
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.
I don’t get many…[Read more]
-
Tracy Odell replied to the topic Tips for Dealing With Congestion in the forum Adults With SMA 6 months, 1 week ago
I had sinus congestion which was persistent after two full years – clearly not “allergy season”.
A brand-new doctor recommended in addition to my usual allergy medication – which is Claritin – to add a prescription nasal spray. Problem solved!
I have enjoyed several years without any sinus congestion since then– except for the odd day or two. I…[Read more]
-
Tracy Odell replied to the topic Bathroom Routine in the forum Adults With SMA 7 months, 1 week ago
Hi DeAnn,
You are brave to bring up this topic!
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]
-
Tracy Odell replied to the topic Live Music and SMA in the forum Adults With SMA 7 months, 2 weeks ago
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]
-
Tracy Odell replied to the topic Different Perspectives on Education and SMA in the forum Adults With SMA 7 months, 4 weeks ago
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]
-
Tracy Odell replied to the topic Gabapentin— thoughts? in the forum Adults With SMA 9 months, 3 weeks ago
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.
-
Tracy Odell replied to the topic Looking for Books By Disabled Writers in the forum Disability in Media 11 months, 1 week ago
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]
-
Tracy Odell replied to the topic Hospital Folder & Advance Directives in the forum Coronavirus (COVID-19) and SMA 11 months, 3 weeks ago
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]
-
Tracy Odell replied to the topic Motivation Monday: What are Your Podcast Recommendations for Lockdown? in the forum Coronavirus (COVID-19) and SMA 1 year ago
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]
-
Tracy Odell replied to the topic A Different Kind of Isolation in the forum Coronavirus (COVID-19) and SMA 1 year ago
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]
- Load More