In August of 1997 my left hand started acting up: I had great difficulty separating the socks I took out of the washer. Lots of strange things were happening, actually. I would fall playing football, suddenly go rigid or develop a lisp whenever I had something to drink. These symptoms manifested as early as March 1997, but I didn’t pay any attention to them due to stress at work. After being advised to do so, I visited a doctor, who referred me to a neurologist. Test results came up blank, but based on the symptoms the diagnosis was “probably MS”. Even back then, I was afraid it would be ALS. In April 1998 my condition worsened, so I was examined again. After an EMG in May a new diagnosis was made: ALS.
See, telling friends isn’t the difficult part. The real grey area is telling acquaintances one used to make polite conversation with. It doesn’t help that my voice sometimes abruptly stops working whenever I get emotional. It even happens when I’m speaking normally. I started avoiding contact and prefer someone stays by my side to assist me in case things go awry. It really impacted the kids, too. However, it’s amazing how accepting children and how well they adapt to new circumstances. Continue reading “Coming out”
Looking for help is horrifying to think about under better circumstances, or maybe I’m just prone to procrastination and postponement. Either way, there is nothing more gratifying and comfortable than actually getting the help one needs.
Yesterday we went to Welzorg – a shop for wheelchairs and other such apparatuses. No matter how dire and nasty the reason for a visit to Welzorg is, I always leave feeling excited. What got me excited yesterday was my discovery of the three-wheeled foldable rollator. I walked using the thing for an hour and a half and almost forgot that I had difficulty walking in the first place. I felt like I did three months prior. Talk about stability. I wasn’t tired in the slightest, either. I walked upright, not at all as crooked as I usually walk to maintain balance. I tried three scooters again and found that the one I preferred last time was still the best one. I’ll be getting it this week. If it wasn’t for the weather I would already have gone back into town. With someone by my side, of course, in case we run into someone. It’s called “coming out”.
Continue reading “Helpful devices”
It’s a lot to take in. Lots of sadness and shed tears, coupled with an unwillingness to face it all, but somehow life goes on, and so do new experiences that come with it.
I have known about my disease for one and a half months now. At first I fell into a deep hole. I could only think about my death and how much I didn’t want to die. I wanted to watch Ward and Floor grow up. That is in essence of what I still want. Continue reading “After the diagnosis”
I’ve been emailing a lot since August, usually spending one to one and a half hours on it every day. It makes me feel more involved; I can reach and talk to people of my own volition. Moreover, I have discovered that writing about my experiences and the things that happen in my life leaves me feeling immensely satisfied. I’ve even tried to get my articles published, but to no avail. Alas, this weblog will have to do: my very own “column”.
Continue reading “Writing and my computer”
It’s a difficult part of my life. Apparently I’m very particular about my needs. I don’t want things to move this fast. I’d like things to match my pace. A little bit less commentary on how much I’m deteriorating, I can do that myself. The contract ALS patients are supposed to sign involving their treatment (about the usage of feeding tubes, artificial respiration, et cetera) was another nasty surprise for me. I still haven’t signed it yet, and I don’t know if I ever will. On a more positive note, my first talk with my neurologist was very enlightening. In any case, I’m happy with my current GP and I’m starting to get used to the Rehabilitation Centre after a bit of a rough start. I still try to discuss my feelings and gripes about my treatment with my doctors. Continue reading “Doctors”
Most emails I send are addressed to fellow ALS patients, if only a few. Email has a certain covertness to it; physical discomforts are invisible to others, letting fantasy take over. Corresponding through email is very therapeutic for me, as is reading ALS Digest. Sadly, some of my peers have passed away recently. Continue reading “Peer contact”
It’s odd. My mother-in-law told me all the way in the beginning that my capacity to enjoy things would not be affected. My first thought then was “whatever”, but it’s actually true, I still relish the good things in life. One would expect a drastic change in my attitude toward life, but so far only small things have changed. Granted, I did become a bit more weepy. I’ve always cried easily, but nowadays there’s really no stopping it. The symptom fits the diagnosis, though. I’m emotional, but I still don’t want to be “sweet”. Continue reading “In essence, one stays the same”
If one thing has become clear to me these past few months, it’s that humans are incredibly flexible. Quality of life is subjective. A stranger, or me in my heyday, would see my current condition as completely unlivable and worthless, yet I still make every day count and that makes me feel fortunate. It’s amazing that people can survive and even thrive after these drastic shifts. Continue reading “Surviving and thriving”
I’ve been noticing it, but it’s not something to shout off the rooftops. It’s something not to draw too much attention too. I can’t always ignore it, though, and when I do it does make me unhappy. Continue reading “Physical deterioration”
Like most ALS patients, the idea of alternative treatment for ALS made me very hopeful back when I was diagnosed with ALS.
On the day I was diagnosed, Steven Shackel published an article in the ALS digest about the surprising results of his research on antioxidants. His website is filled with information on medicines, vitamins, minerals, theories, his studies and monthly evaluations. I used a plethora of antioxidants during the first two years of having ALS. Steven’s story is supported by Eric Gredney’s story. Continue reading “Alternative treatments”
I love going on holiday. Doing things and seeing things with the family, that sort of thing. We’ve always been an adventurous family. Currently, going on trips a bit (read: a lot) more passive than it used to be. Luckily, it doesn’t ruin the fun. Coming back from holidays, however, is a lot less enjoyable. Continue reading “Holiday”
I’ve been getting reactions from strangers on my homepage. I get a kick out of it, but it’s a lot of work to get through, because I want to answer every question and comment. They’re from America, Canada (a Dutch expat) and from Belgium. The Internet is a marvellous invention. Continue reading “Diary September 1999”
Arms are so incredibly important. At first, I mainly worried about losing my legs. I know better now: arms are far more important. Continue reading “Not using your arms anymore”