Seven things for essential comfort with LGMD
In some way’s it's never been easier to have a disability than in 2023.
In most ways, of course, there is never a good time to have a disability, but when technology and equipment are made available for the use of people with disability, we have equitable choices to help us live life the way we want.
We can sleep on beds that make sure we are refreshed as much as possible for the day ahead, and we can comfortably socialise, relax at home and enjoy life.
As LGMD (Limb Girdle Muscular Dystrophy) continues to accelerate its muscle-wasting power through my body I have replaced and added many items to enable critical daily functioning. All of them are purely practical, but some of them are essentially comfortable.
Here are the top seven comfy and soothing items that enable me to live and travel with as little pain, fatigue, and discomfort as possible.
1. Adjustable Bed
This is not just comfortable for me but for those that support me in and around my bed.
For many people with disabilities, a bed becomes a workstation as well.
There are a lot of styles and makes of adjustable beds, but the one that works for me now has three independently adjustable sections - in other styles, these can be customised to suit your measurements. And, an essential electronic/remote-controlled height adjustment that ergonomically assists my support people by ensuring they don't need to bend down when dressing or turning me. The adjustable backrest, knee bend and Trendelenburg (tilting head or feet down) are also features that enable a more comfortable sling transfer as well as provide essential pressure relief.
2. Air Mattress
I've been using my Aspire Active Air Mattress Replacement System for over five years. During this time my needs have changed. While I have tried other bed options when it seems I'm not getting quite what I need from the air mattress, it still seems to be the best for me. After playing around with the pressure load I have been mostly able to experience a cosy snugged-in feeling. The pump must be on continuously but doesn't make an intrusive noise (when it does that means it needs servicing or replacing). Each cell cycles alternately or you can choose to have static pressure.
These options are very important for me. My air bed helps minimise or prevent such things as pins and needles, numbness, intense aching, heel pain and skin pressure injuries.
3. Travel Overlay Air Mattress
All the benefits of the air mattress replacement system in a handy sports-gear sized bag. I never leave home for an overnighter without this! Before we discovered the travel overlay air mattress I had been reduced to tears on what would normally have been very comfortable beds, and we often left at 4 and 5 am after a sleepless and pain-filled night.
We always try to find a king bedroom when we are away so that the air mattress on one side leaves enough sleeping room for Gaz on the other side. However, queen beds are more common, and we still make this work - my man is a legend.
4. Tilt In Space Arm Chair
It's very important for me to change positions throughout the day. Fully able people move constantly and subconsciously, which means that pressure is distributed and that joints and muscles are always activated. As I can't move around to adjust myself this means transferring from my Power Wheelchair to a specialised lounge chair that can support me. And the best type of lounge room chair for pressure relieving and making positional adjustments is a Tilt In Space Lounge Chair, which has a wide range of adjustments, positions and movements.
It doesn't quite replace the deliciousness of curling up on a sofa or dropping into a beanbag but it works fine for me and LGMD.
5. Chair Overlay
Once again, air is this girl’s best friend, and this great invention has stepped up my TV viewing comfort. The recliner chair overlay has inflatable air cells and a cover that is deceivingly tough on the outside and soft on the inside - just like the best people in our lives. It fits securely over most recliner chairs with simple elastic straps.
6. Positioning Aids
I love what I call my E block. The supine position has often become a form of torture for me. There are very few muscles to stretch out any more, and lower back and hip pain can only be alleviated by lying on my back in bed with the help of a padded positional aid shaped like a letter E on its side. My knees bend over and through the block, my calves resting on pillows.
When lying on my side my bony knees and ankles meet in an uncomfortable clashing of bones. This is where my peanut aid comes in handy. I am often set up for a better nights sleep with the peanut placed between my knees and a folded towel between my ankles.
There are many types of positional aids, some of which I have tried, but for now the combination of my air bed with the E block and peanut works beautifully.
7. Heat packs
Almost all of us have used heat packs once or twice or many times but I had never had the need until the last few years. Not only can the humble heat pack soothe an ache, during winter it is now part of my sleeping attire. Most days, during winter especially, I have significantly cold feet and legs. Placing a longish heat pack between and over my feet as I lay on my side at the end of the day, not only gives my ankles padding between them, but enables me to get to sleep sooner as my lower extremities deliciously thermally recalibrate.
Sometimes these essential items come to us through research,
and other times just by chance through conversation, reading and brainstorming. Except for the heat packs none of these options are particularly cheap but it's hard to put a price on our quality of life, nor should we. Another great thing about living in 2023 is that depending on what country you're in there are insurance and government funding options that might be able to help with these purchases.
I hope that sharing the solutions that work for me gives you some food for thought depending on your needs. And you may have other suggestions that you may be happy to share that I and others could learn from as well.
Happy accessible living and playing,
IMPORTANT NOTE: All mention of brand names and the associated weblinks is not necessarily reflective of the brand, the supplier or the style that I currently have or have used. If you are interested in the exact model and brand of something that I use please let me know.