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Anna replied to the topic Do you give unsolicited advice for disability issues? in the forum Adults With SMA 3 days, 9 hours ago
Sure! I never miss a chance to impart my profound wisdom! Seriously though, if you have information or advice that you think can be helpful, why not offer it? Unless of course the person receiving the advice is in denial, in which case it’s best to back up. Insisting will only make things worse.
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Anna replied to the topic How do you create happiness in your everyday mundane? in the forum Adults With SMA 3 days, 9 hours ago
Cool reading list! Based on your interests, I think you would enjoy “The Neapolitan Novels” by Elena Ferrante and almost anything by Zadie Smith. Also, since you like Psychology, I recommend “Stumbling on Happiness” by Daniel Gilbert and “Mindset” by Carol Dweck.
As for COVID, I feel that the damage it caused is, to some extent, irreparable…[Read more]
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Anna replied to the topic Do contractures bother you? in the forum Adults With SMA 1 week, 3 days ago
Yes, I never stopped getting PT until three years ago when Covid turned my life upside down. Now I need to find a new therapist because my current one will retire soon, and due to this traumatizing experience, I’m still dreading the adjustment period.
I’m not having major problems. My breathing is not as affected as you would expect. I just hav…[Read more]
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Anna replied to the topic How do you create happiness in your everyday mundane? in the forum Adults With SMA 1 week, 3 days ago
Mostly reading and watching movies and TV shows. The problem is that none of these seem to work when I’m down. I’ve found that socializing helps me more than anything, but I too try to lay low during cold and flu season. I think the secret is to find happiness in the little things that usually go unnoticed. I used to be better at it.
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Anna replied to the topic Do contractures bother you? in the forum Adults With SMA 1 week, 3 days ago
So, bean bags on the knees is a thing? I thought it was just one of my physiotherapist’s perverse inventions! PT was excruciating when I was a child. It wasn’t just the pain during the sessions -that I could handle- but even the mildest injury would take weeks to heal. My therapist was telling me to be patient for my own good, my parents were tel…[Read more]
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Anna replied to the topic Problems with secretions/phlegm in the forum Adults With SMA 2 months, 2 weeks ago
I’m sorry you are dealing with this, I know how annoying it is. In my case it all has to do with my sleeping position. Essentially, drool goes down the wrong pipe and a coughing fit wakes me up in the middle of the night. I tried different positions and found that it happens mostly when I lie on my side and my head is tilted too far backwards. I i…[Read more]
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Anna replied to the topic Do You Receive Massage Therapy? in the forum Adults With SMA 2 months, 2 weeks ago
This is absurd! Maintenance is vital too. Where I live public health care covers up to 8 sessions per month for 6 months per year and still I find it preposterous that I have to pay for the rest. My parents used to stretch me too when I was little and they did a much better job than many therapists I’ve met.
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Anna replied to the topic Do You Receive Massage Therapy? in the forum Adults With SMA 2 months, 2 weeks ago
I kind of “demanded” that he wore a mask. I don’t know what general practice is, but I doubt his other patients are equally obsessive and high maintenance haha!
If you don’t mind me asking, is it because of Covid that you don’t receive PT or you don’t find it helpful in general? I hate PT more than anything, but I’ve always thought of it as a nec…[Read more]
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Anna replied to the topic Lung Function Tests and Spinal Brace in the forum Adults With SMA 2 months, 2 weeks ago
Do you mean that you take the test lying on a bed without the brace? That would be ideal, but I suggested it once and they rolled their eyes! Glad to hear there are doctors who approve it.
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Anna replied to the topic Lung Function Tests and Spinal Brace in the forum Adults With SMA 2 months, 2 weeks ago
Thank you all for your replies!! I would certainly be firmer if I was sure that my way is the right one, but there’s no way to confirm unless we try. I have repeatedly suggested that we try both ways and compare the results. Honestly, I don’t know if they object from a scientific standpoint or if they just can’t be bothered. And since it’s always…[Read more]
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Anna started the topic Lung Function Tests and Spinal Brace in the forum Adults With SMA 2 months, 2 weeks ago
Hey everyone. I have a question mostly for those of you wearing a spinal brace.
During my lung function testing, I am usually asked to take off the brace (except for a few times in the past when they let me leave it on). The problem with this method is that I am unable to sit independently, so what I do is have my caregiver hold me stable for at…[Read more]
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Anna replied to the topic Do You Receive Massage Therapy? in the forum Adults With SMA 2 months, 2 weeks ago
I hate to be touched because I get injured very easily, but I’ve noticed that massaging the area helps a lot before stretches! Definitely worth a try!
I’m probably a little off-topic, but do you guys wear a mask during PT sessions? I feel that physical exertion makes the mask intolerable!
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Anna replied to the topic Do You Patronize Inaccessible Shops? in the forum Adults With SMA 2 months, 2 weeks ago
For me, it all comes down to effort vs reward. I know lots of disabled folks who refuse, on principle, to go to inaccessible places, but I figured that would reduce my options significantly.
However, I usually try to find a polite way to point out the lack of accessibility. The other day, for instance, I was at a restaurant with outdoor seating.…[Read more]
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Anna replied to the topic Hark! the bells… Covid is here! in the forum Coronavirus (COVID-19) and SMA 3 months ago
Yeah, makes sense. It’s just that I’ve always thought that building a strong immune system takes more than a few days and that these supplements have a more long-term effect. But I guess better late than never.
Anyway, I’m still fine so it seems that it was one more close call! The problem now is that the temporary caregiver I asked to help me…[Read more]
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Anna replied to the topic Hark! the bells… Covid is here! in the forum Coronavirus (COVID-19) and SMA 3 months ago
Thank you for asking Alyssa! Still no symptoms and still negative, but I guess the next couple of days are critical.
My GP already knows. He said he would put a plan into place although he didn’t mention any details. I’ll ask him about remdesivir if it comes down to it. He’s pretty good, just not very experienced with SMA. On the other hand,…[Read more]
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Anna replied to the topic Hark! the bells… Covid is here! in the forum Coronavirus (COVID-19) and SMA 3 months ago
I take a supplement of Zinc and Vitamin C when I’m sick to speed up recovery. Opinions on its effectiveness are divided, but I figured it couldn’t hurt. Didn’t think it would work after exposure though. Also didn’t know about Quercetin. Thank you for the recommendation!
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Anna replied to the topic Hark! the bells… Covid is here! in the forum Coronavirus (COVID-19) and SMA 3 months ago
So do I. The problem is that you can’t eat or drink wearing a mask which means that lots of indoor activities are out of the question. I had barely come to terms with the idea of spending another Christmas at home without friends and family, and it turns out I can’t do that either! Marvelous!!
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Anna started the topic Hark! the bells… Covid is here! in the forum Coronavirus (COVID-19) and SMA 3 months, 1 week ago
After dodging the bullet for three years, Covid finally visited our house. Dad tested positive this morning. On Monday evening he went to a work gathering he felt he couldn’t avoid, so we avoided spending time together the last three days as we knew there was a chance he was exposed. He did my care though three times a day wearing a mask. He’s now…[Read more]
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Anna replied to the topic Wearable tech in the forum SMA Assistive Technology/Equipment 4 months, 2 weeks ago
I’m not much help but I know for sure that, even if we were completely immobile (which we’re not), the heart rate and breathing when you are asleep is entirely different than when you are awake. So, I guess it wouldn’t skew results.
It can’t be as accurate as a sleep study, but perhaps it could detect the possibility of apnea. My pulmo…[Read more]
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Anna replied to the topic What Would You Do As A Billionaire? in the forum Adults With SMA 4 months, 2 weeks ago
Sure, there are many options. My dad buys one every New Year’s Eve, but it’s no more than a family tradition to me. A beautician isn’t on the budget for me either – at least not until the next millennium when I’ll get promoted to a partner – but, like you said, it’s fun to dream!
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