Het bericht Prelude verscheen eerst op Living with ALS.

September 1998

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”.

April 16th

New shoes, what a treat. I don’t get as tired anymore, allowing me to do more. The bed gets adjusted today. That should be a huge help for getting dressed and the like. Leaning back should prove much easier now. I feel lucky again. I really am very happy about my shoes. People say they’re reasonably fashionable as well. I’ll take their word for it.

Het bericht Helpful devices verscheen eerst op Living with ALS.

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.

It is my goal in life, nothing more, nothing less. But the big questions are of course: how, and how long can I endure? It is a constant battle. I may want to live, but it may be closer to vegetation than to living. Do I want that? I even thought: “If I want to kill myself, I had better do it now, because I may not be able to do it later.” I’d prefer to do it in the lease car, that would be less expensive. Then again, I want to live and cannot imagine me killing myself. I have already thought and asked about euthanasia, though I cannot imagine anyone wanting to be injected and passing away with a doctor present. I used to think quite rationally about it, but nowadays I can’t stand the thought. I am also worried about living at home. Would Hein be able to bear it? Would my friends? Or would I end up abandoned and alone in a nursing home? Could I bear that? The thought of my funeral also crossed my mind. In short: a deeply depressing period filled with numerous decisions about alterations to our home and the selection of caretakers. I decided to focus on that. It almost felt like a day job: writing letters, making appointments, drafting up lists, et cetera.

The turning point was really a website I was sent by friends. The site belonged to a Belgian ALS-patient with a very optimistic story. He was not doing well, but he has a goal in life and meditates on it. It invigorated me. I sent the man an email, to which he responded immediately. Through him I discovered ALS Digest, essentially introducing me to an “Internet ALS network”. For now I just observe without participating. In Digest I read an article about a man who, twelve years ago, thought he wouldn’t live to see his son’s next birthday, but had now seen his son graduate from high school. It gave me hope, even the articles about ALS patients who were not doing as well. I admired the way they bravely adapted to new conditions.

Another turning point were my visualisation exercises with Eveline from the LeShan Stichting (LeShan Foundation). Eveline was a person who had crossed my path numerous times, so I decided to call her. It was an important step. Because of her I have started doing visualisation exercises and reading books about meditation and therapies. I also have a new GP.

Steven Shackel is the last topic I want to address. He is an Australian who started using lots of antioxidants, improving his faculties. He has used them for over 15 months. His article in ALS Digest was submitted on the 18th of May, the day I received my diagnosis. I would never have known about Digest without Roland Remmerie, the aforementioned Belgian gentleman. I sent Steven an email and received an email back. Whatever news it brings me, it gives me hope.

Het bericht After the diagnosis verscheen eerst op Living with ALS.

There are lots of new appliances in our home: a lift, a wheelchair, a raised toilet, a tricycle. The lift was immediately tested and approved by the kids. They especially like playing with the buttons. Floor is troubled, however. Neighbourhood kids are kept outside. Recently, when one of them asked why there is a wheelchair in our car, Floor didn’t answer and went inside. There she told me that she found it difficult to tell them. I thought that they wouldn’t mind the wheelchair in a theme park, but when I suggested a fun day out Ward said: “No, let’s not go to a park, otherwise mama would have to go in a wheelchair.” Obviously it’s more of a sensitive issue than I thought. It’s logical. At the park the kids bickered about who would be allowed to push the wheelchair. They sat in my lap while Hein carted us around. It is nearly Floor’s birthday. It won’t be an easy one for her. On the whole they are most gallantly dealing with the current circumstances: being helpful, accepting and supportive. Ward keeps tally of every time I take a tumble. “That’s the fifth time, mum.” Floor panics whenever I fall.

And then there’s the tricycle. Really coming out. The neighbour immediately asks what’s the matter. “Yeah, a muscular disease”, I said with a cramped mouth, but I’m in a hurry, so off I go. Last week the same thing happened with another neighbour. There’s a street barbecue on Sunday. “Just go to the barbecue,” I thought, “but don’t arrive too early and make sure there are other people sitting with us. The kids would like that.”

see also: “Scooter adventures”

Het bericht Coming out verscheen eerst op Living with ALS.

December 1998

I’m a bit depressed. I’m starting to lose hope. The antioxidants haven’t helped thus far. The talks with my neurologist have proven to be disastrous: “Speech therapy, physical therapy, they’re no use. Maybe a bit of emotional support, but other than that? ALS Digest? A bunch of hysterical Californian hacks.” It’s those small jabs at my emotional supports that make me feel undermined. I haven’t done any speech therapy since. Go on without the things that give me hope? I can’t. I wrote my neurologist a letter about it.

Maart 1999

Doctors aren’t doing me any good. My legs are shaking heavily now. Too much empathy is another thing that I can’t stand. I wish everyone could just act like themselves, like everything is back to normal. Then again, nothing is normal anymore, is it?

Het bericht Doctors verscheen eerst op Living with ALS.

January 1999
Bad news first. Roland Remmerie (the Belgian gentleman who introduced me to most sites about ALS including the Digest) and another patient from physical therapy have died from ALS. It makes death seem more looming than ever. I immediately started getting my finances in order and wrote down what I want my funeral to look like. I still have an inner belief, a conviction that I will pull through. Don’t ask me how. Maybe it’s all wishful thinking, me avoiding the reality of my situation. And yet, the conviction is there.

Wednesday, April 21st
For the first time in a long while, I have the house to myself this morning. I put the music up as far as it can go. I have to say, it feels great. I feel euphoric, like when I managed to get out of bed all by myself last Monday. I’ve also been thinking alot about my visit to the World ALS Day. I think I was just curious. I kept comparing myself to other patients. Their images are still burnt in my mind, days later. Who was worse off than me, who was doing better, lots of self-pity, how very few of them had lost all three main functions (walking, talking, use of their arms), etc. I did get the email addresses of several peers. Of all of the things we talked about, I only remember the personal stuff.

Het bericht Peer contact verscheen eerst op Living with ALS.

November 1998

I have discovered writing. Two articles practically wrote themselves: Gran Canaria and Scooter Adventures. I enjoy putting concise personal stories to paper. A friend of mine told me writing really suits me. I think it stems from my inherent wish to be heard. I want to tell the world that I’m still here. Sadly, my column didn’t make the Volkskrant (a Dutch newspaper), and I still haven’t heard back from Libelle Magazine. I think I just need to try harder. Really bear down for a while. On Monday I wrote an article on using my PC with which I’m satisfied. Guess I’ll try the Volkskrant again. Of course, I also busy myself with making newspapers for the kids. Working on them is fun and gratifying.
One could say that my joie de vivre persists. I was practising reiki and heard Ward chattering in the hall, in the shower. He’s always so busy and so lively. I really felt that. I use my greatest strengths in meditation: my joy in life and the enjoyment I delve from it. Those aspects are slowly returning to my life. It’s lovely. Tomorrow we’re celebrating Hein’s birthday. I’m glad we’re still celebrating it. Now I just need to focus on getting my article in the Volkskrant.

See also Wondrous world.

Het bericht Writing and my computer verscheen eerst op Living with ALS.

January 1999
I’m still a massive control freak. Christmas dinner, groceries, packing for holidays (Floor acts as my body, she’s got more of a talent for precise packing than I do. I usually throw everything in a box and let Hein do the dirty work. Not with her. Everything is fitted and measured before it’s packed.) and now I’ve started planning a family trip to the Jura Mountains. I’m still highly involved and not even close to developing a devil-may-care attitude. It’s amazing how one can stay themselves, even during hardship. I’m sleeping a lot less and want to more present, especially to Hein, Floor and Ward. I can’t sleep my life away. Something I do indulge in is lying down in my bed to think about what and how I’m doing; a sort of internal dialogue. It keeps me in balance.

March 1999
There’s no person I can get more at odds with than my mother, about the smallest things. Just like when I was younger. I’d get so angry and frustrated. Everything is unfair. My ability to enjoy life is greater. I still feel childlike wonder and fun every time I visit the pier in Scheveningen or shoot some fireworks on New Year’s Eve or when we go outside to have a snowball fight. I’ll be there, leaning on my rollator. I’m there with them and I’m having fun.
I’m still bringing my A game to bridge night. I’m in it to win it, not to sit by the sideline.

Het bericht In essence, one stays the same verscheen eerst op Living with ALS.

February 1999
Yesterday was a great day. The car was repaired early, taxes were lower than expected, I made a scrapbook with my mother with pictures from recent holidays (a week in Germany and a fun day out in Scheveningen (the kids were amazed at the size of the Kurhaus Grand Hotel)), a good physical therapist and a loving family. My life is going very well. People would call me mad for thinking that, but it’s how I feel. I’m still getting used to it myself.

Saturday, April 3rd
I’ve had a wonderful few days. My birthday was amazingly sunny, so I sat outside eating pastries. My room is a sea of flowers. I visited a forest in Groenendaal with the kids, which went swimmingly. It really was a hot day. The next day I finished my book, sitting outside in the sunshine. On Friday we went shopping with the kids to pick out things for the summer. I loved being there with them. Drinking coffee at the department store, the sun, the smells, the shopping: lovely.

Het bericht Surviving and thriving verscheen eerst op Living with ALS.

February 1999
I’ve noticed that I never write about my physical condition. Peculiar. It’s not like it doesn’t matter. After Christmas I started feeling unsafe at home. My ability to walk has taken a dip, my balance in particular has gone downhill. I walk to the tea parlour with splints. My arms have declined too. I’m having trouble lifting things, even so much as a spoon when I’m eating soup. Typing and drinking tea out of a cup have also become tiring. Speech was trying for me in December, but has improved since then. I’m still eating normally, except for raw endive. I have started chewing slower and more deliberately. Being alone at home isn’t that bad. Using the bathroom isn’t a huge problem. Wiping is actually a bit difficult, but I manage. Same goes for hiking up my trousers. I can’t wash my hair and lower body while showering. Hein helps me dry off and get dressed. For the most part I can get dressed myself. I’ve ordered a speech box and a smaller keyboard. I’ve also been training with my typing aid.
I don’t write a lot about sadness. My crying fits mainly occur when I think about the future. About not being intelligible when speaking and more recently how tired my arms get. One of the worst ones is when my family leaves to go to a theatre play or something like that, and I’m stuck at home alone. Oh, how I cry and pity myself. However, I don’t allow myself to get upset for too long.

March 1999
My lungs got tested, their capacity has decreased by 25%. By now there’s always someone home. Everything is harder. Drinking from a straw, hiking up my trousers, eating without spilling food everywhere, shifting in my chair, standing up, typing, etc. I’m still doing fine, though. I got a nice email from Steven Shackel, the Australian. He’s doing great and is doing a lot better recently. Mentality is paramount.

Het bericht Physical deterioration verscheen eerst op Living with ALS.