Miyoko Kitayama
Member of Japan Rheumatism Friendship Association

I have been a Rheumatoid Arthritis patient for the last 33 years. I originally developed symptoms 2 years after giving birth.

At the time of the onset, there was no definitive treatment yet, so I just changed medicines every few months to see how my condition would change. The inflammation, however, would not subside easily and I ended up with joint degeneration. As a result, I had to undergo surgery on my left elbow and right wrist joint. Then, I also had to undergo surgery on my middle finger and thumb on my right hand.

When I began using biological preparations 16 years ago, my symptoms have gradually subsided, and I am now in remission. I am very grateful that the inflammation has subsided, but the reality is that the deformation of the fingers, wrists, and elbows and the limitation of the range of motion still remain.

For these reasons, I cannot firmly grasp anything with my hands and fingers. It is also difficult to apply force to anything when using my hands. For me being right-handed, the things that I have trouble with in everyday life are really small movements such as opening bottles, turning small knobs, and opening pull tabs. When I can't get help from others, I use various openers to open things by myself. Most of them are made of non-slip rubber and use leverage for opening, but I have a number of tools that I use for this purpose that are shaped differently and use according to the occasion.

Left: Openers of various shapes

Right: The holder reduces the burden on the knuckles

Also, as a device that does not put a burden on the joints of the hands or fingers and does not hurt, a silicone rubber holder is put between the handles of a shopping bag or eco bag when shopping. As a result, the pain caused by the weight of the shopping bag biting into the knuckles is significantly reduced. It's best not to carry heavy objects as much as possible, but that's not always easy to do in life. I think it's a good idea to put one such holder in the bag even if you don't have any hand or finger problems.

Another self-help tool that is often used in my daily life is the magic hand. The magic hand I usually use is slightly shorter than usual with a length of 45 cm. Since I have a hard time kneeling on the floor and bending over, it's very convenient for me when I can’t reach things, want to pick something up, get something in a narrow or a high place, or when I'm cleaning. It is always nearby so that it can be used immediately.

Easy to grab thin cloth or paper

Self-help tools are very familiar to rheumatism patients, and many of these individuals casually use them as very useful tools without really being aware that they are using special things or devising special ideas. Since disabilities vary from person to person, the usability of these self-help tools also varies. I would like to continue to find things that are easy for me to use and use them efficiently in my daily life.

A welfare system which provides people who need services with as much as they need

Born in Saitama Prefecture in 1969. After graduating from university, he worked for a raw materials manufacturer as an engineer for 15 years. He went on to be responsible for the production management division and the purchasing division at a manufacturer of medical and scientific equipment, before developing ALS in 2012, at the age of 43, and leaving his job the following year. He is currently quadriplegic and has undergone gastrostomy and tracheostomy surgery. He makes use of the visiting care system for persons with severe disabilities, receiving support from helpers in his daily life. He is the chair of the Saitama prefectural chapter of the Japan Amyotrophic Lateral Sclerosis Association.

Hideyuki Nakamura

I received a diagnosis of amyotrophic lateral sclerosis (ALS) in January 2013. This disease was not yet as widely known as it is now, and I did not know about it, either. Even when my doctor explained it to me, it somehow felt like someone else’s problem. Or perhaps I should say that I wished it were someone else’s problem.

I came to understand that the more you learn about this disease, ALS, the more you realise how terrible it is. First, you become unable to move your arms and legs, so you can no longer feed yourself, use the toilet by yourself, or wash your own body in the bath. Moreover, you lose the ability to walk, so you cannot even go out of the house. Furthermore, many books said “Your respiratory muscles stop moving, leading to death three to five years after the onset of the disease.”

Even though I went for regular health checkups, I had not seriously confronted the subject of illness, believing that something like that would surely never happen to me. However, over the weeks and months, my condition continued to worsen and, as the strength of my grip declined, I became unable to hold a pen and form letters. My legs and lower body steadily weakened, and I started using a wheelchair a year and a half after my diagnosis. However, since I could not move my hands or arms, I could not operate my wheelchair myself, so I could not even go outside to take a breath of fresh air unaided.

My wife singlehandedly bore the burden of my care after I had reached this state. In addition to being unable to move my arms and legs, my ability to swallow was impaired, so each meal took over an hour, as she brought the food to my mouth little by little. Due to dysarthria, my speech became inarticulate, so that listeners could not make out what I was saying. Because this situation continued for a while, my wife suffered extreme stress.

It was around this time that I learned about the visiting care system for persons with severe disabilities. This system allows people like me, with no or low incomes, to have a helper visit at no cost, for a maximum of 24 hours a day, 365 days a year. However, unlike the nursing-care insurance system and similar systems, local governments do not proactively tell people about it; moreover, since it is a system for disabled people, most care managers, whose work focuses mainly on welfare for the elderly, do not know about it, and it is not widely known in general. More than four years passed after my diagnosis before I learned about this system.

Since I started using the visiting care system for persons with severe disabilities, my life has been completely transformed. It provides nursing care for long periods, usually eight hours at a time, making it possible to go out. Not only has it enabled me to go cherry blossom viewing, to see movies, or to shopping malls; my wife can now go shopping or go for a meal with friends without worrying about the time.

However, the onus is on disabled people who need this visiting care system for persons with severe disabilities to apply at their local government office (of their city, town, or village). They are given a “number of hours” per month during which they can have a helper visit, but the way in which this is understood varies widely between local governments. There are cases in which applicants are not allocated any hours because there is no service provider available; but by far the most common reason given is that “caring is done by families”. This kind of tendency remains deep-rooted: if the applicant has family members living with them, and if these family members do not work, they are given no or few hours of help. A large number of people are struggling because their families are exhausted. People like me with the severest disabilities, such as quadriplegics with tracheostomies, may need tracheal suction at any time.

Most such cases require 744 hours (24 hours x 31 days) per month, including monitoring; but at present, only around 10% of the 1,800 municipalities nationwide provide 744 hours. I hope that local authorities will gain a greater understanding, moving towards a system which provides people who need services with as much support as they need.