Tazuko Matsuura
Authorized NPO member of the National Spinocerebellar Degeneration/Multiple System Atrophy Friends Association (National SCD/MSA Friends Association)

I was diagnosed with spinocerebellar degeneration (SCD) (later renamed multiple system atrophy [MSA]) in 2011 at the age of 61. SCD is a progressive, incurable disease with symptoms of ataxia – loss of control of movement, and other symptoms resembling drunker staggering and slurring of speech. Currently, I am living alone with a disability certificate level of 2 and am certified as requiring long-term care of level 3. I’m receiving housework assistance 5 times a week and bathing assistance 2 times a week from home care workers, and with medical insurance, home visit rehabilitation 2 times a week, and home nursing 2 times a month.

Whether I'm standing or sitting, I can only move within the range of my arm’s length. If I move out of that range, I will lose my balance, feel scared, or fall. I'm afraid of falling while standing (fractured my left instep in 2017), but recently I've also fallen while sitting (fell off the toilet seat in 2022 and fractured two ribs on my left side). While my primary concern is not to fall, I have increased my movements in the sitting position. At this time, I would like to introduce some ideas for various movements one can do while sitting in a chair that are easy to perform.

I purchased the chair from a welfare equipment supplier at my own expense. I had the legs of the chair (in my case, the legs are 34 cm long) cut so that when I sit down with armrests, my knees would bend at a right angle and my feet would touch the ground. In addition, I put the legs of the chair with little sliding caps so that I can slide forward while sitting (Photos 1 and 2). I mainly move in this way because I can feel safe while sitting. The nice thing about this chair is that it doesn’t slip too much and only moves a little bit.

Photo 1: The length of these chair legs has been customized for my daily use. The legs of the chair are fitted with caps that slide a little.

Photo 2. Leg caps for my favorite chair

I live in an apartment with an auto-lock. When I have visitors, I sit in the chair and wait for the person in front of the intercom at the approximate time of their arrival. When the intercom rings, I proceed in my chair and use the remote control which I purchased at my own expense to unlock the auto-locked door (Photo 3). Up to this point, I have done this while sitting in my chair.

Photo 3. Using this remote control to unlock the auto-lock while sitting

After unlocking the auto-lock, I get up from my chair by grasping onto something nearby (a table, piece of furniture, etc.), then walk over to the front door control panel (I paid for the smart door at my own expense) using handrails installed in the remodeled furniture, and walls. This is how I open the entrance door and welcome the visitors. It may take up to 15 minutes for this action to occur.

Indoor mobility is mainly done by walking while holding on to something. I use handrails, walls, and furniture that doesn’t move. When I go out, I use a walker for distances up to 300 meters and for longer distances, I sit in a wheelchair and have someone push me.

“What if my sitting position becomes dangerous?”, “What if I lose the ability to stand up?” I have a lot of worries and anxieties about these kinds of things, but with the help of furniture nearby, self-help tools, and assistance, I plan on living this way for the foreseeable future.