Waiting Seems to be the Hardest Part

By Dan Wilson 

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Like many of us with FSHD, lower extremity weakness is a daily part of life. Personally, I am in conflict about socializing and traveling outside of my home because of my sit-to-stand challenges. 

Sit-to-stand challenges can make someone’s world feel smaller and more isolating, especially for those who live alone or lack a nearby “wing man” or “wing woman” to help. 

At home I have a battery powered toilet lift seat, power lift recliner and a variety of seat cushions to raise my seat height at the kitchen table or if I want to sit on the sofa. I have accumulated enough seat cushions I could probably open my own seat cushion boutique store.  I have determined that a seat height of about 26 inches from the floor is necessary for me to stand from a seated position somewhat easily. The standard chair seat height from the floor is 18 inches. Without this accommodation, even with assistance, it is a struggle to stand. While most people are willing to help me up, it is very awkward, painful, and in some instances, unsettling for me during the assist up activity. Perhaps I can wear a “Blinged” up gait belt and start a new fashion trend.  

My social life has been impacted drastically. I avoid restaurants, sit-down events such as movies and concerts, and even visits with friends because I worry that suitable seating accommodation won’t be available. 

That said, waiting rooms such as doctor offices and the like, are my Kryptonite. In most cases, I go to my personal appointments by myself, which involves a waiting room. Ugh… 

In the past few years, I have come across only one or two waiting rooms that had “bar height” seating.  

Whenever I receive email requesting feedback about my patient “experience”, I always note the lack of bar height seating, and not just for my specific challenge but to relieve the similar physical burden for seniors or lower limb amputees who require prosthetics. 

 I am retired and have time to offer “ride-share” services for family and friends. I enjoy offering this to assist those who have helped me with physical tasks I cannot do such as filling the water softener, changing my bed linens, or hanging a picture. While most people (non-FSH’rs) find these tasks undaunting, they are impossible for me to complete. Ride-sharing for others helps me to give back.  In these situations, I typically accompany someone to their appointment.  

As soon as I arrive to the waiting room, my “chair radar” goes into action to locate a bar-height chair. My back-up, if needed, is carrying one or two seat cushions into the waiting room but to be honest I end up standing and waiting. Recently, I asked for a bar height chair when I had to wait for my mother during eye surgery and much to my surprise and with gratitude, a kind staff member located the perfect chair for the four-hour wait.  

In selected instances, if I anticipate a long wait, I will drop off whomever I am driving, wait in my car and listen for a pickup phone call.  

So now you can understand how “waiting is the hardest part”. 

I have researched various portable seating assist devices that might be more suitable as a cushion replacement.  

The one that impresses me most is the “Sit-N-Stand; The Everywhere Lift Chair”, www.sitnstand.com. The parent company is Life Assistant LTD located in Israel. I recently purchased the Lift Assist Compact Travel Sit-N-Stand. I am still getting accustomed to it. I will report back on my experience with the Sit-N-Stand a little later. If you have used this device, please share your feedback with us. 

The manufacturer website is active and there are video clips demonstrating how the device operates and patient testimonies that are quite remarkable.  

Another type of seat lift uses a hydraulic piston and is activated either by pressure sensing or an electric hand controller. 

The “Carex Health Brands, Uplift Premium Seat Assist Plus with Memory Foam” is a pressure sensing lift device. The manufacturer states it has a “portable” (wink-wink) carrying handle however at 9 pounds this may not be practical for us FSH’rs. Back in the day my uncle owned and operated a television repair shop. Remember those large TV’s with picture tubes and all the electronics inside the cabinet? He would joke and say the manufacturers of these TV’s would advertise them as portable. Just, “put a handle on it and call it portable” despite the 30–50-pound weight! 

 

So there you have it:  

Here I have offered few things that might be helpful. I’m sure there are many more options.  

Please share your experiences, along with any tips that might help others. Our FSHD Gathering Place community has shown me that we all have valuable ideas and advice to share.