I handle hiring new staff the same way as described by Robert Stump, except I don’t do the theft test. In my province of Ontario, the probation period can last up to three months, which is helpful when people only work a few hours here and there in the week.

I also handle the onboarding process formally, with a PowerPoint presentation…

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Explaining SMA to a doctor can sometimes feel like…I have to be my own researcher<font size=”4″>.</font>

<font size=”4″ style=””>Link discovered between Spinal Muscular Atrophy and liver damage</font>

Article Source: https://www.abdn.ac.uk/news/<wbr>23433/

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I don’t think it’s fair to say someone is thinking like a “victim” because they notice something is inaccessible or that accessibility has been taken away. It’s true to say that we all are going backwards when it comes to accessibility!

I’m 66 years old now, with SMA type II, and I can remember how hard the community fought in the 1970s-1990s…

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I’m also interested in the book club. As it happens, I bought Judy Huemann’s autobiography and am part-way through it.

Is there a date set to discuss? Should we meet on Zoom? I could set up a room if people could indicate their time zone and preferred time to discuss the book – during the day, evening, morning etc.

Until I was about 21, my numerous New Year’s Resolutions focused on improving my diet and study habits ultimately to find a good job. My resolutions after that focused on advocacy – such as changing the rules that governed my attendant services and para-transportation; and about improving my relationships, with my husband, my children, my boss…

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Hi again,

An in-dwelling catheter is a 15″ – 20″ silicon catheter that is placed into the urethra (the pee hole). It stays there all the time and your pee gradually runs into a urine collection bag. There are small bags for use in the daytime that fits under slacks/pants (typically called leg bags in our neck of the woods.) There are larger…

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I gradually lost control of my bowels and then my bladder. I figure it is because my back is curving above and below the Harrington Rod used 50 years ago to fuse my back. I chose to have an indwelling catheter, so it only needs to be changed once a month. It has been so liberating to be able to “pee like a man!” Throughout my teen and adult…

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I used Depo-Provera from age 12-21, every 6 months to avoid “breakthroughs.” Check to make sure it won’t halt development of her breasts. I started gaining weight at the same time. Every high weight I attained became my body’s new “setpoint.” I’ve learned it’s best to keep weight to a healthy low. Depo is not good for birth control, since…

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Same here…{sigh}

I will get boosters whenever recommended. I am due for my 2nd booster in June.

Creative writing – myself

ADL – help welcome

Toronto, Ontario Canada!

Re Blake’s post – I have the same difficulty clicking a mouse. It has been getting harder to do, especially if I’m on the computer for several hours at a time. I also learned about Sugru through your site that is available in Canada. I’m hoping it will help me with my mouse and my iPhone button (yes, I still have an old iPhone.) I don’t use a… Read more

Every morning I take creatine, vitamin A, vitamin B, vitamin C, vitamin E, coenzyme Q 10 which was recommended to me at least 20 years ago by a doctor specializing in SMA and similar muscular conditions.

I am about to turn 64, I’m retired after 30+ years of working full-time, a wife, mother of two adult children and have two… Read more

Ontario produces a good emergency preparedness handbook for people with disabilities. The checklists may be helpful.

Canada also has a good emergency  emergency preparedness handbook 

I use Siri on my iPhone and recently found I can say “read me my text messages” and it will read them. It includes saying the name of emojis, but does not give a visual description for images – it just says they sent an image or video.

I can also ask Siri to call people by name or to call numbers by stating the phone number.

Similarly, it will… Read more

My supplier is very good (Toronto, Ontario). The nurse who comes always keeps some supplies in her car, “just in case”. She has used some of her supplies twice for me when I did not have something, and once  borrowed my supplies for another client.

I don’t pay for the supplies myself, so I am quite happy to help out by sharing to make sure… Read more

Have your essentials brought to you by a friend or family member, so they can move them from room to room as you are relocated from one area to another. Bring the bare minimum and stuff that’s easily replaced if lost or stolen.

I brought my electric toothbrush, comb, a printed list of phone numbers in case my cell phone wasn’t handy – just a… Read more

Thanks for this! Well done and what a great message, eh?

Receptionist after school and weekends in the hospital where I lived. I also typed essays and meeting minutes on a per/page basis.

I long for the day when I can stay in my electric wheelchair in the aircraft cabin. I have not attempted to fly for many years because of all the reasons cited in DeAnn’s post. None of the accessibility initiatives undertaken in Canada have addressed this. Only in the US is a committee even taking a look at this possibility with… Read more

I am being just as careful; no change. I could carry the virus as easily as could get it and I was vaccinated with Phizer both times.

I think we can move to “pride” now.

What voice commands? I just know about assistive touch.

 

I have an irrational fear of spiders, so bee, definitely. At least I can blow on it to make it go away. (I guess my breath doesn’t smell like honey.)

 

Every inch can make a difference in being able to reach your stuff and have the leverage to drive your wheelchair.

If it’s a small difference, you could try letting a bit of air out of your tires to see if you can sit lower without compromising the wheels or the smoothness of your ride.

or…

Raise your desk and tables with blocks of… Read more

I submitted a post, and I’m told it is “awaiting moderation”. Please let me know if you get my response to your question, Breanna.

Do you know why it would be sent for moderation? Sometimes I include links, which seems to be a problem, but there were no leaks included my longish answer to your question.

Please let me know if/when you receive it.

Thanks.

I love these podcasts:

Every Little Thing – it is short, humorous, and always interesting – it originates in the US.

Quirks and Quarks – this is a science show with interviews with various scientists studying anything and everything in the natural world from bugs to animals to plants, the environment and space. There are normally six… Read more

If I am advertising online, I provide a fair amount of detail so people can self select out. It saves time. I will include the specific hours available, the starting rate, and general range of duties like housekeeping, personal care. I add that I will train them, which I do because I have them working alongside one of my other attendants from… Read more

In Ontario, people who hire their own attendants have a government grant to do so. Those who wish can share their emails with the group, so we can email one another when we are looking for people. This works out quite well because our attendants are working part-time so often a spot that one person needs to be filled is a vacancy in another… Read more

I have also used Dragon NaturallySpeaking. It works best with Microsoft products, so use Outlook for email, not Chrome. It adapts to your unique way of speaking. I use the Snowball microphone. It stands on the table, so I don’t have to get help putting it on and off. If you buy it, get the physical copy, so you can always prove your purchase… Read more

When we moved into our house, my husband and I made a formal agreement to keep the thermostat set to 24.5 C (that’s 76.1 F in the US). Yet, I still wear a woven cape most of the time!

I use creatine powder – micro fibre – suspended in about 4 ounces of orange juice. Creatine helps athletes do repetitive muscle action longer without the muscle giving out, and so is recommended to me by my neurologist. I can use the mouse longer when I take it and I don’t have any other symptoms like being shaky. I really notice a difference… Read more

I’m reading “Project Hail Mary” by Andy Weir (Author of “The Martian”). It’s another great science fiction story!

When I need someone to get faster at doing something, like help me go to the washroom, I will leave the last 15 minutes of my time with them to get it done. They will want to get out on time, so we will accomplish the task in 15-20 minutes. A couple of days later I will only leave 10 minutes of my time with them to go to the bathroom. Again,… Read more

Ignored, definitely!

Realize you’re immersed in an ableist culture which will skew how you compare yourself to others…

Adapted from https://www.thechelseapsychologyclinic.com/uncategorised/i-hate-my-body-so-much-how-to-improve-body-image-and-when-to-seek-help/

1. Call out what you see

We’re swamped with images these days, most of which have been heavily… Read more

I agree with Dennis andI would add: If you decide to wear a mask for an added safety shield, use an N-95 one.

In my city (Toronto) more than 50% have had their first shot and a small number of people have received their second shot. I’m wearing an N-95 mask If I must go out, just in case.

Leap tall buildings! It would increase my advocacy leverage.

Slow, so I wouldn’t feel intimidated.

Thanks so much for that Brianna. I fought very fiercely for independence since I grew up in the hospital for kids with physical disabilities. Although I need help with most of my activities of daily living, I was independent if I had choice and control over who was helping me and how they were helping me. That manifested itself in the new, at… Read more

I use Google Assistant rather than Alexa. My are named by function: Christmas Tree, Tracy’s Lamp etc.

For fun, ask Alexa who is prettier – her or Google Assistant?

Overheated. Am I supposed to make up a question now ? I never played this game!

Great news, Brianna! I hope it goes well!

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,… Read more