Wednesday, December 2, 2009

One day in the life of my feet and my bottom

It is half past twelve in the evening. I lay in my bed, my teeth brushed and washed. I lay on my back, my feet a bit higher, to get them a bit less thick and swollen. I cannot move or change my position, because my legs are totally paralyzed. I listen to the sound of my bed. My mattress has air compartments that are inflated or deflated with air to prevent bed sores. One hour later my husband comes to bed. He wakes me up en helps me to turn on my right side with the help of an ingenious turning system. I pull my knees up, with the help of two scarves, tied around each leg. I fall asleep again. At three o’clock I wake up. My muscles are stiff because my legs have been in the same position for hours. I try to push one leg a bit down, to let the cramp disappear. I don’t want to wake my husband up already. 30 minutes later I can’t stand the pain anymore, so I wake my husband. He steps out of bed and turns me on my back again. I can get asleep for a few more hours. Around five I wake up again. I lay immobile and helpless. I just can grab the side of the bed and pull myself on my left side. With the scarf around my leg I pull one leg over the other. I can go to sleep for a few more hours till half past seven. The alarm clock wakes us. My husband turns me on my back again. I raise the head of the bed, so I can take my medicine with some water.

Quarter pas eight: home care comes in. Today Anneke will help me. I cannot get out of my bed myself, so Anneke helps me to get up and to slide onto the commode. This commode will be rolled over the toilet and afterwards into the shower. I cannot reach my feet, so Anneke to washes my feet, my hair and my back.

Getting dressed: If your legs are paralyzed you cannot dress yourself. So Anneke puts on my underpants, pants, socks and shoes and helps me with blouse and vest. Big sigh. Getting out of bed, to the bathroom, shower and getting dressed was hard work for 45 minutes. I feel human and able again. Now getting in my wheel chair. I SIT. For the rest of the day I will sit on my bum.

Now breakfast and after that to the office for a few hours. With help of the transfer board I slide onto my mobility scooter. My husband has to give me a big push, because I have to slide up. Then he has to lift my legs and feet onto the scooter, because I can’t move my feet or legs. After a 10 minutes ride I reach the office (I am very lucky to live so close to the office).

Half past ten I reach the office. I have to slalom via the wheelchair ramp. I am used to it and have become quite handy. Then with the elevator to the second floor. There my electrical wheel-desk chair is waiting for me. Every day there are a few colleagues waiting for me to help me into the wheel-desk chair. I manage to slide onto it myself, but they have to lift my legs and feet onto the feet rests. The mobility scooter will be turned, ready for my trip home later that morning. Now I sit behind my desk and start reading the news bulletin. Today our Secretary of State writes about the people who have brought their hidden savings back to Holland. Also the list of bonuses for 2009 is published. The files are all in the computer so I open a file and I try to get some work done. Around noon I need to visit the bathroom. Time to go home fast!! My colleagues fetch my coat and they help me into my mobility scooter. Lift my feet and legs (because …) Ten minutes later I am home. My husband opens the door to the bathroom, so I don’t loose any time.

Visiting the bathroom: First one of the feet rests must been pulled off the chair, or else I cannot get my legs off the chair. I cannot lift those rests myself, because my leg stands on it and I cannot lift my leg. Husband lifts my leg and pulls the feet rest off. Very cautiously I slide sideways onto the toilet. Then I need help to pull my underpants and pants up. With the help of the transfer board I slide onto my wheel chair. Husband needs to give a big push, because I have to slide up. Then lifts my feet en legs onto the feet rests. Pffffff. Finished.

Today I don’t have therapy and we will have visitors. So we will stay at home. For the rest of the day I will stay in my wheelchair. When it is evening I start to be fed up with sitting in my chair. My heels start aching, because my feet are immobile all day on the feet rests. My back is tired, because the muscles of my torso are weak. I look at the couch. I would love to sit on it, but once I am on it, I couldn’t possibly get off. So I just stay in my wheelchair.

When it is eleven o’clock I have sat all day. My feet and ankles are swollen again. Because the calf muscles are paralyzed they don’t have a pump function anymore. My bottom hurts. I have a vicair cushion to prevent sores, but still all those hours of sitting is hard work for my bottom. My husband helps me for the last time of the day to the bathroom. (feet rests off the wheelchair, pull pants up) and into the bedroom. He pulls my shoes and socks off, and my pants. Night trousers on, so I can slide onto the commode in the morning. Tie a scarf around each leg. With an experienced sway I am thrown onto the bed. A bit of pulling and pushing and I lay in the middle of the bed. The day is ended, I can go to sleep again.

My husband will enjoy another glass of wine in front of the television. Today he prepared breakfast and lunch. He cooked dinner, did the dishes, did some shopping, some cleaning. He made coffee and tea for the visitors and for us. Put flowers in a vase. Gave me my medicine, poured me some wine. Etcetera, etcetera. And I?? I have talked to the visitors, I sat behind the computer to write this blog, I play a computer game, read a book. Very lazy. But that is not by choice. I would have preferred to be more active, but that is not possible anymore.

Sunday, November 29, 2009


My legs don’t work anymore. The result is not only that I cannot walk, but also I have difficulties that I did not expect. If I lay in my bed I cannot turn, I cannot get out of bed. I lay helpless immobile. And if I want to turn I need to wake my husband to help me. In the morning I need help to get out of bed into a shower / toilet chair. Someone has to push me into the bathroom and put the chair over the toilet. Then into the shower. I cannot wash myself: because I cannot reach the lower half of my legs and my feet. Washing my hair is becoming heavy, because my arms are tired and heavy. Washing my back is impossible. Getting dressed: I cannot pull my pants. Putting on a shirt or pull over is difficult. I cannot put my sock and shoes on.
Getting up in the morning is the most difficult part of the day. Once I am in my wheel chair it will go better.

My arms are getting weaker, but they are still working o.k. Also very annoying even frightening is that I cannot cough properly, or blow my nose, or even sneeze.

So this body is not working properly and I am really fed up with it. But … I am still there inside and my sences and my brain are working o.k. That’s why I still can:
Feel: loving hands on my shoulder, the sun on my skin, the wind in my hair, my cold feet.
See: How beautiful nature is, trees with their bare branches against the blue sky; A ballet performance I went to with my husband and my daughter, I saw people using their muscles in an incredible way; my husband who cares for me, my daughters when they are visiting me; birds in the garden or near the sea, and the big freight ships on the river Schelde, heading for Antwerp or the North Sea.
Smell: The nice food my husband cooks every day; the dung on the farm land (funny I know, but I always liked that smell), the smell of horses, roses and the sea. No more perfume though for me, because it makes me cough.
Taste: I am lucky that I can still eat everything. I love to eat nice things. In December we planned two dinners with family and friends. Oh I love those evenings, so I am going to enjoy it!!
Hear: music, music, music, birds in the garden, talks with family and friends and the little steam train that rides near our house.
And I can talk and sing.

And my thoughts are still there. I can read books, invent solutions, watch T.V. do computer games and fantasize and dream. In my dreams I still can walk and dance. When I was a child I often dreamed that I could fly in my dreams. If I do my best those dreams may come back.

I have to accept that that’s my life now. And I try!!

Monday, September 14, 2009

No fun

Till now I always tried to ignore the fact that I have a disease. You may think that's impossible but no. I don't know how it is with you, reader of this blog: When I sit in front of TV, read a book, talk to friends, make music, I forget the world around me and I forget my disease. No problem. Moments like that are very often every day.

But yesterday I just coud not use my legs. Getting from one chair into an other: O help I was afraid to fall on the floor. Going to the bahtroom: first I am afraid to fall on the floor. Then I have to stand up again to pull my pants up, again I almost fall. I have to balance on my right foot. My left leg just does nog want to support me. I can't pull up my pant. Husband has to come and help me. But he is not quick enough: help! I almost fall. O.k. I did not fall. Now I must step from toilet into wheelchair. Difficult. Be careful not to fall. I am afraid again.

After a few of those moments it just hits me: I want to stop with this disease, it's no fun anymore. And than all of a sudden I realise: there is no exit in this disease except the one exit I don't want to take. There is no escape. So now you all know, why I had a difficult day yesterday.

But then: one HAS to go one whith life. So just like someone running the marathon: if you're in pain and think you can't go on running, just clench your teeth, ignore the pain and keep on running. You have to if you want to be in the game. So today I just took myself up. I went to my work, I went shopping and to physical therapy. I am in the race again. Please run a bit together with me.

If you want to help find a cure for ALS please look on this link:

Monday, September 7, 2009

I feel good

I feel good!
After a few months it is time for a update about me, about ALS and about life.
The hardest part of every day is the morning. Getting out of bed, washing, dressing. I am exhausted once I am up and dressed. Also sleeping is getting less relaxing. Turning in bed is difficult, so I try to lay still, but sometimes you just have to turn. Laying on my back is still o.k. but I am very aware of my breathing. Still: my lung activity was recently monitored and is still the same better than everage, so probably it’s just me worrying for nothing.

Every Monday morning I go swimming in the local pool. They have a lift for wheel chairs, so I can get into the water quiet easily. But dressing afterwards is very hard. Still I like it so much that I want to keep doing it as long as possible. Only my legs that are very weak. My arms, hands are perfectly strong, swallowing is still very good. It’s just I can not stand for more than a half minute and walk only one or two steps with support. But as long as I am reading, typing on the computer, sitting at my desk at the office, eating out with my friends and family, I forget my disease. That is nice I think. I forget to worry and just feel “normal”.

Still I made up the balance of my life. And this is what I think:
The length of my life is not so very important for me. I am 54 years old. I never expected that I would not make it to my retirement. I made a big fuss about the question if I had to keep working till my 65 th or maybe could quit before that. This question has become totally unimportant for me. Now I feel It is not important how many years you will live, but important is: have you had a good life, a great life, or maybe a good enough life. I am looking back and I think: I do regret some of the things I did, but still my life was good. And ….. it is not over jet. I can add some more good and great times to my life.

Two songs about regret that I like very much:
Edith Piaff sang: Non, je ne regrette rien (no I have no regrets). As you have read in this blog this does not completely apply to me, but for the most things it is true. If I hear that song, I feel it’s true.

There is also a musician, his artist name is Ace Noface. He has ALS. He composes his music with the help of just one finger and a computer program. He composed the song Regret. See and listen here:
This song is very special. It is different from every other music I know. You can buy his music online, a.o. at

Finally my wish: I feel good now. I really do. I just hope and wish that I can stay as positive as I am feeling now. …………

Monday, May 11, 2009

ALS is not all there is

Yes I have ALS, and I find that the disease is affecting my body and mobility. But ... I want to have a life besides being ALS patient. So my goal is to have a highlight every day of my life.

Last few weeks were good weeks. Today: I went to the swimming pool with my husband. I had not been swimming for almost 8 weeks, because I was afraid that I could not climb out of the pool. But today I was there again. I could walk and swim in the water. I could stretch the limbs of my feet and relax in the water. It was great.

Last weekend: we went to the river Schelde near where we live. In the water we saw a porpoise (bruinvis) jumping out of the water. Also we saw a buzzard, being was attacked by smaller birds protecting their nests. It is very beautiful outside in Zeeland (Holland) The weather was nice, Frans was playing his bagpipes and people came to listen to him.

Last weeks we invited several guests for lunch or dinner at a nice restaurant, just to celebrate friendship. It were lovely days and evenings, with much friendship.

Also I went to band practice with the wood wind band. I love playing the clarinet and it gives me lots of pleasure. I bought a new book for playing piano, it came the next day and I have now a lot of new tunes that I can play on the piano.

Last week we booked our holiday for this summer. We will be going to Scotland for two weeks in August. One week in the countryside and one week in Glasgow, the most vibrating and interesting city of Scotland. We will be there for the pipe festival. I keep my fingers crossed that I will be able to go on that trip. But I am confident.

So you see: ALS is not all there is.

Wednesday, April 22, 2009

Lithium trial

Yesterday we went to the UMC in Utrecht for a follow up visit. Aim was to let me ask my questions which might have arisen after the diagnose. I knew already a lot, thanks to internet. I just wanted to know where I have freedom of choise. Many things about ALS frighten me. Well I have the choice to accept of refuse every treatment. Will I be brave enough to refuse anything? Time will tell. I am glad I am not living in Italy or Ireland!

For a start I chose to participate in a medical trial with Lithium. Lithium may give a lot of side effects, so it might not be benificial at all, but I want to make the effort to help scientific research to cure ALS. Among the side effects is: It improves depressed moods, and helps preventing mood swings. Well I can use that. But it can also cause: nausea, dry mouth, kidney damage, might affect thyroid, weight gain, etc etc. But also I have a 50% chance that I get a placebo: in that case no side effects at all. We'll wait and see.

Another investigation gives patients a big, big list with questions. The list came today. It took me several hours to fill in every answer. It appeared to me that I have spent a lot of time sitting behind a desk in my lifetime. What a waste of time. Too late now to change that.

Friday, April 17, 2009

De diagnose ALS - wat vooraf ging

Dit berichtje had ik op Tweetup Zeeland gezet op 6 april.
Morgen naar UMC Utrecht. Wat eerst een voetblessure leek, en vervolgens misschien toch een hernia was, en vervolgens: geen hernia, maar wat dan wel......lijkt nu meer op een ernstiger neurologisch probleem.Morgen voor second opinion naar Utrecht UMC. Hopelijk dan een diagnose. Morgen ziet de wereld er anders uit.

En inderdaad mijn wereld ziet er nu anders uit. Ik heb ALS. Dat betekent dat ik
- nooit meer beter zal kunnen lopen, wel slechter
- straks mijn ledematen niet meer zal kunnen gebruiken
- het leven is eindig geworden ... dus het is tijd om de balans van het leven op te maken

En nu? Ik ben nog gezond, dus ga ik genieten van het leven. Gaat dat me lukken: Yes we can. Als ik het wil, dan kan ik het. Dus ga ik hier de kroniek van de rest van mijn leven proberen bij te houden.