- Sun Jul 14, 2019 3:26 pm
Hi all, this week I saw Angela Merkel on CNN and heard Dr Sanjey Gupta. The heavens opened. Sort of. I had no idea that the shaking was an actual thing. I recognized it immediately, and for the first time also found out that there is something wrong with my legs, that it's not only in my head. This might become a long post. So bare with me. For years I had the sensation of having no balance, or needing a wall or something to sit on. I silently moved a chair next to the shower, so I can sit to dress. Trying to get my pants on on one foot like I use to be able to do ends up jumping around like a clown in a very bad way. It started pretty innocent, I think I had my first weird things around 2003, when I first noticed that my balance was of. Over the last years it has gotten worse, although I always (since I was a young kid/woman) preferred doing things sitting. Cooking, ironing, can't do anything standing up. Since the last four/five years I have come to the point where I can no longer photograph as a wedding photographer because I shake too much standing. And it's hard to log a chair with you at weddings. I like to do night photography, but that has come to the point where I tell my shooting buddies that I need to stay close to the car, and have my set up ready by the time it gets dark. After dark I am like a drunk bat. No balance what so ever, and becoming a liability to others. I don't hike anymore. Since a couple of months ago I started going to the gym because I thought that I was being lazy, to experience that treadmill is dangerous. At times I went back faster than foreward, with only laughable results. My solution is the bike with the back support, where I can sit in. I don't know what it is called as I am flemish speaking. I am a Belgian, married to an american husband, living in New Mexico. So with the sitting bike I now go five days a week with the goal of building strength in my legs. That was before I saw Merkel shaking. I will continue to go to the gym, because it probably can't hurt. In 2004, a couple of months after we moved to the States, I collapsed and was taken to hospital. It was due to dehydration, but at that time I told the attending that I had balance problems and she got me an MRI. With no results what so ever. It came back totally normal, which made me think even more that it was all in my head. Seeing Merkel and browsing this website is like a treasure trove. I see all my problems neatly spelled out by other people, and in better words than I could ever have imagined. Standing on a chair or ladder has become impossible. Funny and annoying thing is that I watch my weight now since going to the gym, it takes me 15 minutes to get a good reading because I can't stand still on the frigging scale. As it seems to be a general consensus for now that there is not really a working cure, I will keep silent about it, till I am more sure. I downloaded the iphone app and will try to make that one work so I can see how bad the tremors are. I am not prepared to start with the few medications there are now as I had Graves when in my 40's, and need to be careful with kidneys. I was on dialysis for 3 months but lucky enough my kidneys picked back up. Hurraah. So if I now could find a non medicated way to deal with the tremors that would really make me happy. I do travel to visit my family in Belgium, standing in the row in airports is hell. So I have a rolling suitcase I can sit on. It might get to the point I simply take a wheel chair. Although that makes me feel guilty because nobody sees anything strange when they look at me, I look perfectly healthy. Anyway, I will continue browsing this website, hope nobody is bored to death by now. I sit nicely behind my computer, typing away... Should I thank Angela Merkel?