Oh, I’m so sorry to hear this! Losing a pet is never easy. Your boy sounds like he was your soul dog. 💛 I lost my soul dog back in 2014, and it was the first real heartbreak I had ever experienced. I miss him to this day, but the love he gave me and the life he taught me make me feel like he’s still with me and always will be.

Hang in there, my…

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I can’t live without my heating pads. Hot showers help, too. On the days when my pain is bad, I will take ibuprofen. In another forum, a few people brought up CBD lotion. I haven’t tried it yet, but I’m wondering if it can help with neck pain as well. Have you ever tried it before?

Yes, this is super helpful. Thank you so much. Do you have any bath chairs that you would recommend?

Aww 🥰 yeah, doodles are so intelligent! My friend has a Bernedoodle, and we taught him how to hug me while I’m lying down. Basically, he comes over to me and puts his head in the nape of my neck and gives me a quick snug. It’s the sweetest thing in the world. I cried happy tears when he did it for the first time hahaha. Dogs are truly the best.

All great advice. 🙂 Cats are great companions to have. I’m sure yours feel just as lucky to have you in their lives.

Thanks for sharing your experience. That’s good to know! I’m assuming you ingest the oil? What type of topical lotions have you used in the past?

I think it’s time for me to get a new shower bed. I’m not even sure if that’s the correct term. It’s a mesh bed in a bathtub. I’ve had mine for as long as I can remember, but it’s getting very difficult to be carried in and out of it. However, I don’t know where to begin, so I thought I would turn to the forum.

What are the first steps I… Read more

That’s kind of how I have always gone about it as well. With kids, I keep it very simplistic. But if they don’t stop asking questions and I start to get annoyed, I tell them this is how God made me, and they usually stop after that. 😂 For some reason, they never question that!

Your pets are so cute! What is the temperament like on your mini goldendoodle? I’ve always wanted a mini bernedoodle.

I definitely agree that smaller dogs are better for safety reasons. I feel safe with mine just because my parents do most of their physical care, but you brought up some great points. Gosh, I don’t know what we would do…

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Big dogs are definitely more work. As my parents are starting to age, I see that it is becoming more difficult. Our white Golden has a neurological issue where he basically doesn’t realize his back legs exist. Some days are harder than others, when he needs more physical help. I imagine it’s not easy to help an 80-lb dog get up. 😅

What types…

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You’re a natural on camera, Mike! Thanks for showing us how you get around. Very cool.

I live with my parents, who take care of the physical aspects of my dogs’ needs; however, I manage their care in other ways by reminding them to give them their vitamins, schedule appointments, etc. I also think the youngest and I have this ESP thing going on. Whenever she wants something, she comes to me and looks me directly in the eye.…

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Pets can be such a source of comfort, routine, and joy, but with SMA, they can also come with real physical demands.

Still, for a lot of us, the love and companionship can make it all feel worth it 🤍

Do you have any pets right now? Does the emotional support outweigh the physical energy it takes to care for them? What helps you manage… Read more

For sure!

Thanks for your input, Mike. I do agree that the explanation varies depending on the situation that I’m in. In the case with the nurses, I never know how much information to divulge, especially if I’m not going to hire them. But you have some great points and ideas here that I will have to pocket for the future.

Thanks, Kev. Yeah, I transferred from my pediatric PCP to an adult one about ten years ago. I was so worried about that transition, but honestly, my doctors in Boston take care of all my needs, so I didn’t have much to worry about in hindsight. 😆

I’m sure I will be in good hands at the new hospital. I just need to tell my anxiety that!

This is so cool, Mike! Congratulations. When it’s posted on YouTube, you should definitely share the link here

Question for you guys, but first, story time!

I’ve been going to the Children’s Hospital for most of my life, simply because few doctors are trained in SMA, and I have a wonderful team there. Long story short, an adult clinic opened at a nearby hospital a few years ago, and I’m in the process of being transferred there.

I’ll be honest,… Read more

All great columns! I don’t think I’ve ever seen SMA portrayed in a medical drama, but to tell you the truth, I stopped watching them years ago because they bring back my own medical traumas from the past. 😅 I’ve debated watching The Pitt so many times, though. It looks so good.

I have to agree with Anna. I feel like when chronic illness…

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Ha, I like that message. Maybe I’ll leave a note on someone’s windshield next time. 😜

I hear you. That’s why I love this forum, because it reminds me that I’m not alone in the messy parts of life with SMA. 💛 Finding the right caregivers should be an Olympic sport.

I lost my main nurse back in December, and the past few months have been an absolute nightmare trying to find the right fit to replace her. Why are good caregivers so hard to find?!

Fortunately, we recently found someone, but I still feel like I’m holding my breath, waiting for something to go wrong. Let’s just say that I met a few colorful…

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Living with SMA isn’t just a physical disability. There is an emotional and mental aspect to it, too. Some days hit harder than others, like when fatigue feels all-consuming, or your body just doesn’t cooperate… it can wear on you.

What’s been the most frustrating part of SMA for you lately? Any coping strategies that have helped? Share as… Read more

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.

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:

1. Do you receive PT every day?
2. Do you get acupuncture for other things besides your relationship with food? I went a few times, probably about ten years ago, and…

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Hi everyone! We haven’t done a treatment check-in in a while. So I wanted to create a safe space where we can talk about our treatment journeys and what we’re most looking forward to in the future.

Are you currently receiving any treatments? How is that going? Is there a treatment you want to be a part of? How are you feeling about the… Read more

Learned something new! Thank you for sharing your experience. This is new territory for me, and it is something that I will experience for the first time myself soon. It’s nice to hear from others.

Hi all! Just checking in to see how you are enjoying the forums. 

What topics would you like to see more of? Are there any resources you are hoping to get from this forum? What matters most to you in an online community like this?

Please give us your feedback, or feel free to private message me.

It’s like the old saying, “If I had. a dollar every time someone parked in a handicapped spot that wasn’t handicapped, I’d be rich.”

But you’re right, I would never want to call someone out if they had an invisible disability because they deserve the spots just as much as we do. I’m definitely cautious and mindful of that.

That time that woman…

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Really glad to hear that the pill has helped you. How come you’re not taking it anymore? Are you only supposed to take it for a certain amount of time? Sorry if these are silly questions.

Getting a bone density scan was never at the top of my long list of things to do and manage with SMA. But now that I’m getting older and having more aches…

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Interesting! I really need to schedule my scan. I’m in between hospitals right now, so it’s just a waiting game.

These days, I think I would win gold for most endurance in problem-solving insurance woes. 😂

In honor of the Olympics, let’s celebrate the elite athleticism it takes to live with SMA. 

If SMA had its own Olympic Games, which event would you compete in? 

Fastest power wheelchair driver?

Master of creative problem-solving?

Best “I packed literally everything I might possibly need” travel bag? 

Be as serious or as… Read more

I’ve had people ask to borrow my permit for concerts and sports games, which is just crazy talk. I would never allow that. But I do agree that people with invisible illnesses need them too. They should have a permit though to prove that.

One time, a friend and I called someone out on this because I couldn’t get out of my van. Let’s just say the person said some choice words to us that I cannot repeat here. It was an awful situation, and unfortunately, they were not very understanding.

In honor of the Patriots’ going to the Super Bowl this weekend (go Pats!), I have to share this video with all of you. 

Basically, the Patriots coach, Mike Vrabel, shares what drives him most nuts, and his answer is when able-bodied people park in handicapped spots. But what I love most is that he actually calls people out when he sees… Read more

I’m more of a mystery/thriller book reader, so I don’t know how many fantasy books I can recommend to you. However, I did just read “The Midnight Library,” which is considered fantasy. It was pretty good. I enjoyed it, and I believe the author is coming out with a second book along the same idea this year. Something to consider!

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… Read more

This is the coldest and snowiest winter we’ve had in years. It’s terrible. I try to go outside for my mental health, but the cold is so harsh on my body that I would rather stay inside. My bones and joints are not a fan. We’re potentially getting a bomb cyclone this weekend on top of 18 inches of snow already on the ground. So, in other…

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You will have to give me some productivity tips because all I want to do these next couple of months is lay under a blanket, sleep, and watch TV/read. 😅

This reminds me… I was supposed to do a bone density test over the summer, and I forgot. 😑 Try not to dwell upon it too much. I know the scan is super easy to do, so maybe you could talk to your doctor about getting one prescribed for some peace of mind. I will say, in the past couple of years, I have had more trouble with my knees and…

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So many good ideas here. I never thought about wearing thermal pants as a base layer. I may have to do that. I don’t remember the last time winter in New England was this cold, and I’m struggling to stay warm, even indoors. Due to poor circulation in my lower extremities, I have a hard time regulating my body temperature in my legs and feet.…

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I’m not going to lie, I’m definitely feeling the doldrums of winter right now. January is always the month I struggle with the most when it comes to my mental health. That being said, there are a few things that are bringing me joy right now and helping time pass by quicker: 1) It’s playoff season for football, and my beloved Patriots are still…

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Winter can feel especially heavy… short days, long nights, disrupted routines, the mid-January slump. When you’re living with SMA, the seasonal doldrums can hit a little harder, both mentally and emotionally. So I wanted to open up a gentle check-in space here. 

How are you doing? Are there any small snippets of joy getting you through… Read more

Admittedly, I have not set any goals for this year yet. I’m more of a “hibernate until spring” kind of gal, then I’ll reemerge from my den feeling renewed.

That said, I am going to try to set timelines for my goals when I’m ready. I’ve always avoided this in fear that SMA would hold me back from achieving them. But I want to teach myself that…

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New year, new goals?

I’ve been thinking a lot about what goal-setting looks like when you have SMA. Some may hit the ground running. Others may prefer a slow and steady pace. Then, of course, there are the inevitable curveballs SMA throws at us that veer us off course. While this doesn’t stop me from achieving my goals, it makes it difficult… Read more

Ohhh ok yes, I understand now. And that makes a lot more sense than the way I was thinking! But I hear you, girl. Screw optics. I wanna be cozy.