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What are some tips and tricks for aging with SMA?
I’m officially old.
Okay, just kidding, but kind of. When you think about it, 35 years old is practically geriatric in the SMA world. 🤪
I’ve reached a stage in my life where things like my joints hurt in rainy or cold weather, my bones snap, crackle, and pop, and I have to text my friends things like, “Is this an SMA thing, or is it just because we’re in our mid-thirties now?” Apparently, it’s a little bit of both.
So I wonder, how can I be proactive at this stage in my life? What helps you as far as aging goes? Are they dietary supplements? Is it heating pads? I know I can’t get rid of these aches and pains, but please give me all your tips and tricks.
I will be talking to my doctor about this in April, but I just wanted to go to you guys, the pros, first.
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6 Replies
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According to my dad (mid-50s, non-SMA), consuming food and supplements that promote collagen production supposedly helps. More collagen equals better cartilage, equals less joint pain.
You could look into traditional Chinese medicine (TCM), too. Obviously, discuss with your doctor before you receive any treatment or consume any supplement, but there’s growing biomedical consensus worldwide that TCM is effective. The hospital I go to now offers and combines it with “Western” medicine.
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That’s awesome. I’ve always said I wish that my doctors would integrate more Eastern medicine into their care for a more holistic approach. I’m going to have to take it upon myself to research TCM a little more.
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Grrrl, age is a state of mind.
That being said, the reality is that aging affects our bodies more than perfectly healthy bodies. Joints creak more, fatigue sets in earlier, crazy adventures have less appeal. But there’s always things you can do to mitigate those effects.
Like Sherry, I’m a big fan of TCM. I see an acupuncturist every week and this has changed my relationship with food. Some things are very common sense, less sugar, less salt, less processed, more whole foods. Try reading a nutritional label, you’ll be shocked the kind of chemicals we’re putting in our bodies.
One thing I didn’t expect is how important PT has become. If you want to keep moving, you have to keep moving.
Staying engaged is something else that we don’t always talk about. It’s easy to sit back and be sad about everything that we’ve lost, but that doesn’t do anything. Even if it’s volunteering on the phone or taking a Zoom class or doing an art project or showing up for a friend, being connected is what keeps us nourished.
Each of us needs to find those things we’re interested in and explore them, engage with them, maybe find new ways to enjoy them.
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Hey girl. My brain is convinced that 1995 was only 20 years ago, so by that logic, I guess I’m 25! 😜
These are great tips. Thank you for sharing. I do have some follow-up questions for you:
- Do you receive PT every day?
- Do you get acupuncture for other things besides your relationship with food? I went a few times, probably about ten years ago, and I just couldn’t feel zen. I didn’t feel much of anything from it. Then again, I know there are different variables that could have affected that.
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I’m in my mid 30’s with type III. My hips have been bad since my teens. I have a torn labrum that cannot be fixed, arthritis, and effusion(fluid) in both hips. My back and shoulders are starting to act up now and again too. With SMA we don’t have the proper muscle mass holding joints together, so that causes arthritis and the body tries to compensate by sending fluid to cushion the joint. Our low muscle mass makes our joint move to much and in ways they are not meant to move. Larger joints are the most prone because the have the most pressure on them. The joint hurts before rains because of the low barametric pressure outside making the fluid in the joint swell and puts pressure on the joint and nerves. I get really stiff and sore about 24 hr before rain, but once it rains it goes away pretty fast. It only rains about 120-140 days a year where I live, so that is fun lol.
I’ve tried PT, collagen supplements, joint supplements, and prescription meds and none of them really worked for me. PT basically said the only way to fix it would be to stregthen the muscle around the joint and have surgery to fix my labrum, but with SMA it is basically impossible to build muscle mass and I was told surgery for my labrum was not possible because of the SMA. So, there was nothing they could really do besides teach me a few exercies to keep what muscles I do have as healthy as possible. Heating pads, stretching every few hours, THC/CBD gummies (legal in my state), and over the counter pain meds like aleve help me the most. Honestly, the THC/CBD gummies have been the most help. I was skeptical trying them at first, but I had researched that it showed signs of helping arthritis. Not only do they help with the pain, but they help me get sleep. I have not slept this good in years and that has really helped my mental and physical health. I did not really realize how much it was distrubing my sleep till I started getting good sleep again. Being mentally rested helps me a lot tolerate days where my body is not so cooperative.
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Great topic. 63 years old, type 3, ambulatory until just under 11 years ago.
Susana’s ‘keep moving’ point is huge. This applies to everyone, not just those of us within the SMA community.
At one time I did acupuncture with a TCM trained acupuncturist. Not someone who read “Acupuncture for Dummies”, etc. Her and her husband relocated to the US from China in the mid 90s. When I first starting seeing her, she did a lot of research and started using e-stim in combination with acupuncture. For me, having this done in the quads helped immensely while I was still walking. Unfortunately, they moved out of the area and I stopped doing this. It is definitely worth exploring if you have the opportunity and means (my visits were covered by insurance). I know use e-stim, just with electrodes (self adhesive pads instead of acupuncture needles) about 3 times a week.
I also do PT, one land and one pool session each week. If you have access to aqua therapy, I can’t recommend this enough.
I have a pretty extensive home exercise program and am fortunate that I don’t deal with fatigue as much as some others in our group.
Ultimately, it’s ideal to keep ourselves in the best possible shape as we age since research is bringing us more treatment options in the near future. We are very fortunate that so many options are available because most other NMDs have none or at best one treatment available. I’ll be responding to the apitegromab topic shortly.
The ultimate game changer for us will be motor neuron regeneration or creation. Since we are currently born with the number of motor neurons we will have for life, once they’re gone, the effects of SMA increase significantly. The areas where we have more viable motor neurons are the areas where treatment (and exercising) is more effective. But we have to keep as much flexibility and strength as possible even in our more adversely affected areas.
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