anna
Forum Replies Created
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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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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 have a very bad scoliosis which made Spinraza injections impossible. Plus, the eternal pain of trying in vain to find the right brace for my needs. My family has never been big on bold decisions so I’ll never know if they made the right call. They did the best they could though.
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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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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 telling me that we should ask him to slow down if it was so unbearable, but that only made me think that the problem was my low threshold for pain. No one had really realized that he wasn’t supposed to push so hard in the first place. This nightmare lasted about a year; after that, either my body gradually got used to it or, more likely, he gave up trying to correct the contractures and settled with maintenance.
Aside of PT, I used to wear splints for a while, but they reduced my mobility further during the day and affected my quality of sleep at night.
Surgery was a no go for me too because of the risks. I didn’t even get a spinal fusion which is a decision I’ll be questioning forever.
I’ve noticed that bone deformities make me more susceptible to injuries, but other than that, I don’t mind them either.
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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 imagine this varies from person to person, so it’s basically trial and error for everyone. After I found my “sweet spot” I rarely have problems anymore. Hope you find yours soon.
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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 the same procedure at the same place, inevitably, I have to deal with the same people every time!
As a last resort, I decided to contact the head of the department and managed to convince him to repeat the tests in three months with the brace on. He also suggested an arterial blood gas test to give us a better view given that the spirometry will be inaccurate no matter how we do it. Has anyone done this before?
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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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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. The garden was accessible, but there were two steps to the main entrance. I asked if there was another entrance with a ramp, in case I wanted to dine indoors sometime, and the answer was obviously “no”. I said, “It’s OK, we’ll be visiting only when the weather is good”. My parents or caregivers could easily carry me inside, but the owner didn’t know that and I wanted them to feel bad. It worked!
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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 pulmonologist advises against relying on these apps, but doctors typically trust no one and nothing but themselves lol!
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I would ensure a lifetime’s stock of Evrysdi since it’s not reimbursed for patients over 25 years old in Greece. Either that or I’d buy Twitter and save humanity from the monumental incompetence of the raving lunatic who owns it now! Plus, I would invest in Access Air! I never play though. If SMA has taught me anything it’s to leave nothing to chance.
Btw, I too have thought about hiring a beautician to do my hair and makeup every day! It’s a relatively attainable goal. My boss has one and she’s neither a billionaire nor disabled lol!
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I explain to them in advance my organization system (pictures, spreadsheets etc.) so that they understand that, when I insist on putting things back in place, I’m not just being pedantic, I’m only trying to avoid adding more chaos to my already complicated daily routine! Of course, I only have one PCA, so this usually works even though I have to remind her occasionally. I imagine it’d be more difficult if I had more than one.
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Totally!! I do all that stuff as well, plus I keep a record of the epidemiological profiles of everyone I know: How often do they get sick? What do they look or sound like when they are sick? Are their sniffles caused by allergies or do they have a cold? Of course, I don’t share this piece of information with anyone as it would creep people out, but the point is that all my life I’ve managed to be extra cautious without turning into a germophobe and I fear that Covid is now threatening my achievement!
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Thanks Alyssa! Yes, all I had to do was resubmit my application along with two X-rays of my spine proving I can’t receive Spinraza. In my case, it took about a month to hear back. I haven’t heard of any rejections so far and I don’t think I will because the cost is covered by public healthcare which means that private insurance approval is not required. Of course, I’ll be posting updates because what’s more interesting than the greek bureaucratic hassles?
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Thank you for the honesty… I think! 🙂 Seriously it’s comforting to know that at least it can be managed. Have you tried to reduce the dose or frequency of Imodium in case your body has adapted and you don’t need it as much anymore?
I don’t know when I’ll be starting yet, I was told to wait for further details. Will keep you posted!
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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. Everyone is acting like the pandemic is over -and, honestly, maybe it is- but I still have trouble getting back to my previous normal-ish life and I don’t know how long it will take to move on.
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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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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 necessary evil. I often wonder if it’s worth the suffering through…
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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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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 out for a few days has to leave tomorrow. My mom can do anything when it comes to my care except lift me and carry me, due to a chronic spine condition, which means that my dad needs to come back on day 8 after symptom onset, at least to put me on my chair and take me to the bathroom. Of course, we’ll take all the precautions (masks, gloves etc.), but I’d feel better if we had another couple of days or at least if he stopped testing positive.
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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, I’m not sure who else I can contact.
Merry Christmas everyone and stay safe! Everyone I know is under the weather. You don’t want your holidays ruined by any virus!
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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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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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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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I take pictures of everything. I’ve also added to my spreadsheet a column of possible combinations of clothes that match. Of course, unless everything is put back in place after use, my elaborate system is rendered totally useless! Caregivers will always make mistakes, that’s inevitable. All we can do is direct again and again till they memorize at least the basics.