Mattress shopping really makes me want to take a nap

Finding an option that's just right can be especially difficult with FSHD

Robin Stemple avatar

by Robin Stemple |

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Last week, my wife, Wendy, and I finally got around to starting the process of purchasing a new mattress. We realized when we moved to Pittsburgh in January 2023 that we needed to replace our mattress, which has served us well for many more years than the sleep experts recommend. It’s been so long that I don’t remember a thing about the last time we went mattress shopping.

This time around, the selection process has been an ordeal. My facioscapulohumeral muscular dystrophy (FSHD) has made the simple tasks of getting in and out of bed, rolling over, and adjusting my position for comfort challenging, to say the least.

Our current mattress is housed in a waterbed frame. Yes, back in the ’80s, Wendy and I had a waterbed. We actually enjoyed it for quite a few years. Waterbeds were a bit of a fad in the ’70s and ’80s, but the craze eventually died. When it was time for a new water mattress, we found that the store where we’d purchased the bedroom set was no longer in business. We were unable to find a replacement.

Eventually we found a furniture store that sold an innerspring mattress that fit into our waterbed frame. That’s the mattress that came to Pittsburgh with us.

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What we need in a mattress

One thing I really like about our current bed is the sturdy wooden side panels, originally designed to keep the water mattress in place. They give me something solid to push off of when I stand up.

Side support will be a big factor in our choice of a new mattress, which we’re going to put on an adjustable bed frame. At some point, I think I’ll need to move the mattress into a sitting position to get out of bed. Getting up into a sitting position is still doable for me, but it’s becoming more difficult.

Buying a new bed is an opportunity to get one at the optimal height for me to stand up once I’ve gotten into a sitting position on the side of the bed. I now find it much easier to stand up from a chair, toilet, etc., if it’s at least 18 inches high.

I had to make a change in shower chairs recently. The one I’ve used for many years is only 16 inches high. It also has some flex to it, bending when I push off of it. When I stand up, I need everything underneath me to stay as rigid and still as possible.

For mattresses, perhaps mushing is a better word than flexing. The “mush” factor really came into play as Wendy and I tested out mattresses. A couple of them tried to dump me on the floor, with the side of the bed turning into a sliding board when I got into a sitting position. Others seemed more solid initially, but the pillow tops compressed when I pushed up, reducing my lift.

Wendy and I are both side sleepers. While everybody’s mattress is an individual choice, generally speaking, side sleepers prefer a softer mattress. On a scale of 1 to 10, with 1 being the softest and 10 being the hardest, side sleepers usually end up in the 3 to 6 range. I’m looking for that “just right” mattress that’s solid enough for me to stand up easily, but also soft enough to allow me to get a good night’s sleep.

The adjustable bed frames we’re considering give us some options for bed height. We can have the bed set up so that we can adjust the top of it to be anywhere from 26 to 39 inches off the ground. Wendy is somewhat shorter than me. We’ll try to find a height that makes it easier for me to stand up while not requiring Wendy to take a flying leap to get into bed.

Getting on and off and changing positions on the dozen or so mattresses we considered was exhausting for me. Fortunately, we’ve narrowed our search to three that we liked. We’ll need to go back for a final comparison before we make our purchase. Of course, price will play a role in our final pick. Our three finalists range from $3,200 to over $8,000. We’ll be spending a third of our days — perhaps for the rest of our lives — sleeping on the mattress we choose, so we won’t necessarily go with the cheapest option.

Consumer Reports recommends that once you narrow your mattress choices down to a couple, you return to the stores and spend at least 10 minutes on each model you’re considering. I can hardly wait to do that! After all, mattress shopping really makes me want to take a nap.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


Seema avatar


Hi Rob,
Hats off to your efforts. Very inspiring to read this piece and the multi talents you possess and live life to full inspire of your restriction. I can relate to it. as I am a daughter who suffers from Limb girdle muscular dystrophy. She’s 26.
She faces lots of challenges in getting up from toilet, chair and bed.
We are from India and were visiting US, our son lives in Austin.
Here, our daughter is facing the same issue of mattresses. She’s unable to roll or sit up. In Indian beds , she could do that after raising the bed height though. Tried some firm matteresses, but no use. Unable to find a solution

Allen Carney avatar

Allen Carney

Hi Rob,
My wife and I went through this process last year. What a pain in the "backside"! I didn't go this route but probably will in the not too distant future:
But in addition to this, we by chance slept on a bed that met both our needs made by a company called Lucid -
Was told it had foam and coils. Coils were in the middle third of the mattress where support was needed most.
It seems to be soft enough for my wife and firm enough for me to be able to turn over without much trouble. And I loved the price! In fact my wife made the remark that if we had to replace it in 5-6 years it's still a deal!
Thanks for your writings.

Carey McIntosh avatar

Carey McIntosh

Hi Rob,

Once again, your column is very timely for me! Our current mattress is really not doing it for us anymore, and we've been talking about getting a new one. These are good considerations that I might not need so much now, but could well do over the years that we'll have our new purchase. By the way, there's a term for how well the sides hold up when you're sitting at the side of the bed, but I don't remember what it was. You might check out Wirecutter from the New York Times, as I think they did a mattress comparison not that long ago, and it had a nice description of different mattresses, how they're constructed, and some pros and cons. Good luck! I hope you find one you love for a long time.


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