|This nightmare disease has been with me for so long that I am struggling to remember what my life was like without it. I am almost 64 years old, and the best I can recollect is that the strange and terrible sensations in my body began when I was about 26.
I was living life to the fullest. I was a first lieutenant in the Air Force, totally involved with sports, going to MIT graduate school (I ultimately acquired three master's degrees), and my wife and I had already started our family. We had four children in all before I got my degrees in meteorology, aeronautics, and astronautics. Quite a load, now that I look back. Yet something was very wrong. How come I felt like I had to go so often, and most of time I did? Several times, I didn't make it to the toilet. Bowel incontinence! I was mortified and close to panic.
I found myself more than once in a toilet stall on a lower-floor bathroom of the brand-new Green Building on the MIT campus, cleaning myself up, throwing away my undergarment, and going to class briefless. I soon learned to carry paper so I wouldn't have to rely on those skimpy toilet tissues, and extra underwear, giving my "brief"case a very private meaning. I did this for years as bladder incontinence soon followed the bowel problems.
There were no disposable briefs in the 1960s. I was using bulky cloth diapers (with snap-on inserts and a liquid-proof outer cover). What a pain! Then, in 1973, my mom found a product made of a thin vinyl sheath with Velcro straps. They had disposable inserts. I wore them under my briefs for years. Just before I retired, adult disposable briefs hit the market. What a godsend. I kept a spare under my wheelchair cushion whenever I went out.
Finally, in the mid 80s, the liquid-togel pads were developed. WOW!
All these products have Madison Avenue names: Reassure, Promise, Tranquility, and the like. Despite the haze of good feelings these names are supposed to bring, I understand that today MS experts think of them as "okay for extra security" but when it comes to managing MS bladder problems, "Forget the diapers," they say. (See The Medical View.)
My relationship with toilets and their seats has been, well, a learning experience since MS entered my life. Falling back on conventional low toilet seats or struggling to lift my 6'2" frame up from them was tough. For a long time I didn't know that high toilets existed. I discovered the "wheelchair toilet" only after I began using a wheelchair. A high toilet and wellplaced grab bars have made my life much easier since. So do padded seats. (They would have helped earlier too.)
But my disability progressed. Eventually I couldn't use bars around the toilet for a 180-degree turning transfer. I had to go sideways, and yet another problem surfaced: The toilet seat kept dislodging. My wife used a lot of duct tape until she had a better idea. She asked a friend to put brackets under the seat that hold it firmly to the bowl.
Some people can't get into toilets because of narrow doors. Why President Roosevelt and Eleanor didn't nip this problem 70 years ago, I'll never know! A nationwide building code requiring 32-inch doorways everywhere would save a lot of folks a lot of trouble.
Instead, Roosevelt used a kitchen chair on wheels for the narrow doorways around the White House. (I bet they were to the bathrooms.) You can see a reproduction of his chair at the Roosevelt Memorial in Washington, DC.