| What I Can Still Do! - September 21, 2007 |
| 2007-09-21 18:48:47 |
| I can still walk! I can still talk! I can still eat! I can still drive! I can still work! I can still give hugs! I can still kiss little cheeks! I can still tell George and Emily, “I love you!” ………………………………………….
But some of these things are not as easy as they used to be. I now use a walker. I need the walker for balance since I can’t support myself standing upright unless I’m leaning on something. At home I don’t use the walker since I can grab onto things as I make my way around the house. However, this will probably have to change soon and I’ll need to start using a cane or walker even around the house. George and Emily are so active now that there has been a few times they have bumped into me and if I had not been holding onto something, I surely would have fallen. While my progression still remains slow and the loss of function is gradual, when I finally notice something I can’t do as well anymore, it seems like it’s a sudden loss.
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| It’s The Little Things That Get To You! |
| 2007-09-21 18:47:27 |
| · Like not being able to turn the handle on the bathroom stall to close the door or if you manage to get the handle turned to be able to turn it again so you can get out. I can’t tell you how many times I thought, Oh no! I’m stuck in the bathroom stall. The idea of crawling on the bathroom floor under the door to get out is not very appealing and fortunately I haven’t had to resort to that yet.
· Like not being able to get up off the couch. This happened to me at Emily’s birthday party. I sat down on the corner of our sectional couch to chat with a few guests. When it was time to cut and serve the cake, I realized I couldn’t stand up because there was nothing for me to hold onto and push myself up. Without guests present I probably would have slipped onto the floor and crawled to the nearest thing to pull myself up with. But not wanting to make a spectacle of myself, I just sat there and received a few funny looks from Pete, like, “Why are you just sitting there and not doing anything!” Oops! I guess I need to get over the not wanting to make a spectacle of myself syndrome!
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| Frustrating Days - January 2006 |
| 2006-02-20 19:11:23 |
| My ALS is progressing at a very slow rate, for which I am very grateful for and I really don’t have anything to complain about at the moment, but there are days that having ALS can be very frustrating and discouraging. For example the morning I stopped to get gas and I couldn’t get the gas cap off the van because my hands were too weak. After struggling a while, panic sets in, what am I going to do. I have to get gas, there is no way I can make it to work with the little gas I have. Maybe I should ask someone standing around me to help. Asking for help doesn’t come easy for me, plus maybe I am just a little embarrassed. I could call Pete and have him drive to the gas station to help me but that seems a little extreme. If I ask for help, how much do I need to explain about why I can’t open my gas cap? This is similar to the day I was at the mall and couldn’t get Emily out of her car seat. My hands were too weak to push the latch. Once the panic sets in, I have to stop myself, take a deep breath and remind myself that at least I can still do these things even though it’s a struggle. So after 20 minutes and a lot of deep breaths, Emily was out of her car seat, and after a few curse words, I did manage to get the gas cap off. Being able to perform these simple daily activities I used to take for granted and when I can’t, I’m reminded of my situation. |
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| September 22, 2005 – Tee Off Against ALS Golf Tournament |
| 2006-02-20 18:57:46 |
| Okay, I know I’m going to sound like a broken record, but I continue to be overwhelmed at the outpouring of support. What a day! The weather was perfect for golf, the course was beautiful and everyone seemed to enjoy themselves. What an exceptional effort on everyone’s part. The tournament raised $10,000 for ALS research.
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| July 21, 2005 |
| 2006-02-20 18:57:16 |
| I have my next check-up at Washington U. I am happy to report that not much has changed since my last check-up. |
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