Archive for the ‘Multiple Sclerosis’ Category
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[caption id="attachment_4870" align="alignright" width="300" caption="The US Supreme Cour Building"]
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WORK, WORK, WORK. Our son had to work on this last full day we spent in Washington, DC and it was a very full day. Grandma was fixing breakfast when she was greeted with the news of Bin Laden's death. Hurrying downstairs I was then greeted with the unexpected information. Surprisingly except for an enhanced security presence (see later in this post), his death had little effect on our trip.
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[caption id="attachment_3723" align="alignleft" width="195" caption="Our son with me and my wheelchair"]
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Forward, on with the adventure ! The time has come to reveal all (well, almost all – I do have some secrets). My previous posts alluded to some of these adventures in our nation's capitol. The experience was a bit different than we expected.
OOPs, I don't want to get ahead of myself so I'd better start at the beginning with our arrival at Union Station in Washington, DC (I tend to think way faster than I write and by the time I finish writing a thought I often forget the next thought so I'm trying to slow things down while I write). The weather was nice upon arrival. In fact the weather in DC was quite pleasant for most of our visit though on a couple of occasions it did get a bit windy and cool.
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Burrrrr ! The wind off the lake cut right to my bones. My bones were swathed in clothes but it didn't help much. My fingers were numb, my nose was running and I was chilled. So started our participation in the Seattle 2011 annual MS walk fund raising event. I in my wheelchair and grandma with her arthritis along with our daughter, her husband, our grandchildren and my sister braved the elements in order to carry on the fight.
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Here is a quick update of my recent medical activities which is causing me to take a temporary haitus. Hopefully I'll be back in about a month.
The surgeon in charge of my treatment has semi-retired and moved to Idaho. We were without anyone in charge of my treatment for about six weeks but eventually we got a new surgeon to take charge. He's worked out a new treatment to compliment my earlier radiation treatment but we postponed the implementation until he would be continuously available for about three months in case any problems should arise.
Anyway recently my pancreatic drain has become very erratic so we had to start the new treatment a bit earlier than anticipated. About a week ago the drainage completely stopped temporarily. We didn't know if the drainage had finally stopped or if the drain tube had become clogged. Only one way to find out so last Wednesday I went in for a CT scan and a tube change. The procedure was fairly routine (for me) but my allergic reaction to the CT contrast dye was the most severe I've experienced. It may have been worse than usual as I appear to have coincidentally developed a cold at the same time. As a result I have spent most of the last three days in bed with a fever. I'm still feeling very weak.
I probably will not be doing much for the next month as we monitor the new procedure. The drainage seems to have stabilized at a much reduced amount (maybe the radiation treatment is finally having a positive effect !!!). If it doesn't stop completely then the hope is that the new treatment will create an internal “abscess” of sufficient size that it will form a target for positioning an internal drain tube from my pancreas to my stomach. If that works then we will not be tied to our local area and we will be able to get on with a somewhat normal life or at least as normal of a life that someone with MS can have.
FYI: I'll probably not be available or post any updates for much of the next month as we work through this new treatment. I have to go back for another CT scan in a few weeks so I expect another allergic reaction to lay me low soon.
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As regular readers of this blog know I'm disabled and am effectively able to only use my right side. This makes it all but impossible to use a hand held camera especially the latest compact digital cameras. The new cameras are so small I don't see how anyone effectively uses them. I wanted a camera I could use one handed with fingers that are numb but no one actually makes such a system so I was forced to come up with my own jury-rigged design.
Here is the system I came up with. As you can see from the photos it is essentially a “point and shoot” camera system. It has a handle so I can hold and point the camera and a “trigger” so I can take the picture. If you would like to build such a system here are the instructions along with a parts list on how to build one. The system cost me about $200. in total of which the major expense was for the camera.
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[caption id="attachment_1196" align="alignleft" width="300" caption="At the 2004 MS walk"]
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Unlike many MS sufferers I don't mind revealing my medical condition but then my experience is somewhat atypical. I know that some people with MS have experiences similar to mine but in my experience (with support groups and others) we are a minority. In fact for many there are excellent reasons for them to hide their condition for as long as they can. Luckily I don't have that problem.
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I often receive comments telling me how "courageous" I am fighting my medical problems. I even had one doctor tell me I was "a tough old bird" (doubtless a turkey). I never know how to respond to these comments. I don't feel particularly courageous or special.
Let's face the truth, (more...)
