If I were bedridden in a hospital I could say that free food was a perk, except that a long time ago, in high school economics I learned there is no such thing as a free lunch, especially in a hospital.
Perks.
I am retired. I can sleep in any day I choose. I still miss building houses, I still miss teaching Taekwondo, I still miss walking, using my hands in a normal way, showering alone, (but not by much), brushing my own teeth, but the perks here involve Amy, and that is all good.
We have ordered a Hoyer lift to get me in and out of the pool.
We have begun the process to get me my own power chair, designed specifically for my needs. My Jazzy, gifted from some wonderful friends, still runs strong and will remain an integral part of my chair family. My new chair has many features covered by Medicare that will help me function better. Unfortunately, a speed upgrade that would allow me to ride alongside Amy on her bike is not one of them. 1,500.00 is just plain impossible. We broke the bank for an elevator option that raises me 10 inches so I don't have to talk to belt buckles.
We are coming back to Peoria next week. I expect and hope to see everybody who knows I exist. Since I expect and hope to beat ALS, the bar is set high enough that all is worth longing for. I will fill in details later.
We will be at the Rhythm Kitchen Sat the 26th at 7pm to eat and then to enjoy Nick and Paige and Co. Crash the joint and I will offer free one handed hugs. No cover, kids welcome.
Perks.
I am retired. I can sleep in any day I choose. I still miss building houses, I still miss teaching Taekwondo, I still miss walking, using my hands in a normal way, showering alone, (but not by much), brushing my own teeth, but the perks here involve Amy, and that is all good.
We have ordered a Hoyer lift to get me in and out of the pool.
We have begun the process to get me my own power chair, designed specifically for my needs. My Jazzy, gifted from some wonderful friends, still runs strong and will remain an integral part of my chair family. My new chair has many features covered by Medicare that will help me function better. Unfortunately, a speed upgrade that would allow me to ride alongside Amy on her bike is not one of them. 1,500.00 is just plain impossible. We broke the bank for an elevator option that raises me 10 inches so I don't have to talk to belt buckles.
We are coming back to Peoria next week. I expect and hope to see everybody who knows I exist. Since I expect and hope to beat ALS, the bar is set high enough that all is worth longing for. I will fill in details later.
We will be at the Rhythm Kitchen Sat the 26th at 7pm to eat and then to enjoy Nick and Paige and Co. Crash the joint and I will offer free one handed hugs. No cover, kids welcome.
I just LOVE your spirit and I can't tell you how happy I am that you're going to enjoy that pool! It's the one thing I miss about not living in Tampa anymore.
ReplyDeleteI'm soooo excited!! We will be waiting for the details. I'm also glad to hear that you now have a safer way to get in the pool. We'll see ya'll next week.
ReplyDeleteTracy, welcome to Dallas. My wife, Dewie is an ALS patient and we met your wife and daughter (?) at the Bachman Lake meeting Monday. From your recent blog posts, it sounds like you are learning some new things that we could all benefit from and Dewie and I would love to meet you some time. In addition to the MDA-sponsored Bachman Lake meeting every second Monday, there is also an ALS Association-sponsored meeting every first Thursday in Plano (next meeting will be June 7th). Dewie is a "meeting person" and I'm not or rather I was not, but she wanted to go and we have attended both groups for a while now and I've come to look forward to them. I have to say we've learned a lot from others through the support groups that we have incorporated into our strategies for living with ALS. Anyway, its nice to read your blog and I wish you and your family the best.
ReplyDeletePete Quortrup