I was officially diagnosed one year ago today in the Rochester, MN, Mayo Clinic. I say "officially" as we were relatively certain earlier in the year based on my symptoms.
I'm not celebrating this anniversary, but I am indeed celebratory about being here a year later, walking (with braces and canes, but walking!), able to do most things for myself still, and unaffected in my breathing or swallowing or talking. That is good!
I made it down the deck stairs to the yard today and supervised Caroline doing some long-neglected garden work. It's 93 degrees, so she felt a bit oppressed as I sat sometimes in sun, then in shade, and pointed out what she needed to do. I can honestly tell her it would be done by me if I were able. I miss gardening, piano, running...but that's a downhill thinking pattern!
We had a lovely time in Anaconda, celebrating 25 years married and my 54th birthday. Lots of family and my dear friends Julie and Mike and Wendy from Helena shared our happiness. Life is so very good.
Thursday, July 31, 2014
Sunday, July 13, 2014
Relentless
Truly ALS is a relentless foe. Each day things (body parts) feel a little weaker, a tad more achy, and I am more unsteady. Tired of looking at my feet turn purple when I sit too long.
Dolan and I fly tomorrow to Billings to see a doctor about more leg braces. Paul is in Bozeman, Caroline in Helena. Thought we'd cover another major city! Billings Clinic has an MDA/ALS clinic, so hopefully I will attend that also. I am not wedded to the idea of being a constant patient, but I know they can help me some.
I looked at old photo albums today. I have had such a good life, filled with family, friends, love, travel. How can I possibly feel sorry for myself? I just want my passing to be easy on my loved ones.
Dolan and I fly tomorrow to Billings to see a doctor about more leg braces. Paul is in Bozeman, Caroline in Helena. Thought we'd cover another major city! Billings Clinic has an MDA/ALS clinic, so hopefully I will attend that also. I am not wedded to the idea of being a constant patient, but I know they can help me some.
I looked at old photo albums today. I have had such a good life, filled with family, friends, love, travel. How can I possibly feel sorry for myself? I just want my passing to be easy on my loved ones.
Thursday, July 3, 2014
Merrily we roll along...
Walked up my ramp with my walker yesterday evening! While not completely finished, I can access my house without the split-level stairway. That is a good thing.
Especially as things are progressing steadily. Funny, to use the word "progress" when it means such a dreadful thing. It's even difficult typing with my right hand. My ring finger is pretty useless, at least for me to confidently type. No great coordination between the right hand fingers.
Suggested "Until I Say Goodbye" to my book club, and they gamely agreed. I said it was my role to spread awareness of ALS! I hope they enjoy it, and it gives them more information about ALS. It's sad that the author has passed, but I know from FB posts that she lived a life of joy right up to the end.
The 4th of July is tomorrow: lots of plans for the Park, a friend's house, Shakespeare in the Park, and fireworks. This year I won't go barefoot (and get a burn on my sole)--one benefit of a brace! I have to wear shoes.
Trying to get into an MDA/ALS clinic in Montana. Really not sure that I will get a lot out of it, but I do need to be fitted for another or an expanded brace (and one for my left leg, too). I am not a fan of the medical community. I haven't had a bad experience; I just don't like committing myself to others' care. Bad patient! Good thing I have a disease they can't really treat. I'd be a very recalcitrant cancer patient.
Hot days in Havre, but the shade is bearable. It really is a wonderful world.
Especially as things are progressing steadily. Funny, to use the word "progress" when it means such a dreadful thing. It's even difficult typing with my right hand. My ring finger is pretty useless, at least for me to confidently type. No great coordination between the right hand fingers.
Suggested "Until I Say Goodbye" to my book club, and they gamely agreed. I said it was my role to spread awareness of ALS! I hope they enjoy it, and it gives them more information about ALS. It's sad that the author has passed, but I know from FB posts that she lived a life of joy right up to the end.
The 4th of July is tomorrow: lots of plans for the Park, a friend's house, Shakespeare in the Park, and fireworks. This year I won't go barefoot (and get a burn on my sole)--one benefit of a brace! I have to wear shoes.
Trying to get into an MDA/ALS clinic in Montana. Really not sure that I will get a lot out of it, but I do need to be fitted for another or an expanded brace (and one for my left leg, too). I am not a fan of the medical community. I haven't had a bad experience; I just don't like committing myself to others' care. Bad patient! Good thing I have a disease they can't really treat. I'd be a very recalcitrant cancer patient.
Hot days in Havre, but the shade is bearable. It really is a wonderful world.
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