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: http://www.alsvrienden.nl/acties/LianneGoes/Mijn-25-jarig-ambtsjubileum/donaties.aspx

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.