Hi Everyone, I know I'm past due for a status report... so here goes! It has been busy, busy and my nephew and his family just left after two weeks to return to their home in Bucharest on Friday. We had our family trip to Chelan, which was wonderful... there were 18 of us there together... and it took me a couple of days to recover. I haven't figured out how to manage my time and energy yet so its been a roller coaster ride. When I feel good I do everything and overdo it. Then I crash and can barely function for a day or two. I never want to email on my down days because I would probably sound like I was on my last legs and then the next day I'd have to email and say never mind I'm just fine :-)
Everything has been going fairly well... some ups and some downs.
The downs... meeting with the lady from the ALS Assn, who was very, very nice, but still not a lot of information you want to discuss; meeting with contractors on what can be done to the house to adapt it to my future needs... way too much information; having a portable wheelchair delivered from ALS (not using it yet), buying a walker (which I have to say is very cute, candy apple red on wheels and with a seat, and it helps me tremendously), a six-hour ALS Clinic appointment: saw the neurologist, physical therapist, occupational therapist, speech therapist, pulmonologist, psychologist, nutritionist and social worker. It felt good to be getting so much good help but very tough too. And I am missing my Arizona friends. It seems like such a long time since I was in AZ. I've only been diagnosed for 3 months and it seems like years.
The ups...I always like to finish with the ups :-). Many, many fun, wonderful get togethers with friends and family, and many more planned. Enjoying my home and the beautiful, calming view, piano get togethers, Corey and Tom tending to my every need, watching Diamond exhibiting pure joy chasing her ball and squirrels at Lincoln Park, eating too much and having the doctor tell me its important that I maintain my weight (yes, it's true), and I finally got my medical insurance situation straightened out. Also, I am happy to say that right now we are proceeding with putting in an elevator, which I think is going to work out very nicely and look OK. And having the elevator go to all 3 floors will make it so we don't have to do so many other things that were contemplated, which I am quite relieved about.
The stairs are getting to be a real drag. I'm maintaining well but do notice a little more weakness in my legs, hands and tongue, which is causing more slurring and a little trouble chewing. But overall I still have the same spirit and I feel so fortunate and blessed to live in two special places and to have the love of so many wonderful friends and family. Couldn't get through this without that love and support.
Tom has been having a few nagging medical issues since we got back. He's having throat surgery tomorrow to remove a wart from his vocal cords... kind of the same thing he had a couple of years ago in Scottsdale. The great news is he passed all his tests at Fred Hutchinson for his 5th year checkup and is good to go!
Sure hope all is well with all of you and you are enjoying your summer.
All of you.... stay healthy, be happy and enjoy each day!
Much Love, Diane
