A lot happens in a week!
One week ago I went to my doctor. He raised the voltage on my deep brain stimulators by half a volt on each side. By doing so, once I had slept under the new conditions, my doctor and I seemed to unlock new layers of ability without dyskinesia.
When I got to physical therapy this Thursday I showed my therapist pages 110-115 of John Pepper's book, the section on conscious walking. He read them and he started thinking. It didn't take long before I was praticing walking WITHOUT a walker for the first time since my knee replacement surgery November 20!
It was hard, it was scary, it was not very good, it was WALKING!
Thank you to Dr. Houghton for the ability , to John Pepper for the possibility, and to Matt Thomas for the creativiity.
Just imagine the parade. Me followed by two men holding tight to my gait belt; they are followed by a Third person pushing a chair.
That was my problem. Keep calm…
Tomorrow I'll be riding down to New Orleans to see my doctor for the first time since October. I feel a little at loose ends because for ten years now, since the fall of 2005, I have seen my movement disorder doctor every four months. Tomorrow, though, marks five months since I traded in my knee joint for a replacement built by DuPuy. So much has happened since my knee surgery - for me and for all people who have Parkinson's disease. The FDA has approved new formulations of levodopa and amantadine, and results from a small study of DBS settings have been released. I'm pretty sure that my worst dyskinesia and my worst speech is associated with anxiety. It's all too much for one twenty minute appointment but I've written my doctor about my priorities, concerns and questions. I hope it helps me stay on track.
Knee prosthesis by DuPuy
Yesterday, I was disappointed to learn from the TCNL (tactile communication and neurorehabilitation labotatory) is done with their Parkinson's research and is no longer recruiting. Their device, the PoNS (portable neurostimulator), trains the brain to use new pathways by stimulating the tongue. It is something I think might be able to make Parkinson's a thing of the past.
I first learned about PoNS when I read the first chapter of Dr. Norman Doidge's first book, The Brain That Heals Itself. That chapter introduced the work of Dr. Paul Bach-y-Rita. I was gobsmacked. I looked but Dr. Bach-y-Rita had died from brain cancer. I did not pursue it. Then, Dr. Norman Doige wrote a second book The Brain's Way of Healing. Someone had picked up the thread of the work. They are still working on the PoNS! The earliest possible FDA approval is late 2016.
" When did you hear of this?" "About three years ago."
" Do you think about what is being developed?"
"This waiting," Frank said "gives you the time to take full advantage of whatever is being developed."
Terry Pratchett died yesterday. He had Alzheimer's. He was brilliant. He wrote books from the fantasy genre but he was so funny and so very wise that before my handwriting became unreadable, I often wrote down quotations from his books when I read them. These a few memories Tiffany Aching had of Miss Tick, an older witch who often taught apprentices. It is from _A_Hat_Full_of_Sky_.
"Bits of Miss Tick's teachings floated through her head: Always face what you fear. Have just enough money, never too much, and some string. Even if it's not your fault, it's your responsibility. Witches deal with things. Never stand between two mirrors. Never cackle. Do what you must do. Never lie, but you don't always have to be honest. Never wish. Especially don't wish upon a star, which is astronomically stupid. Open your eyes, and then open your eyes again."
My pastor has been urging us to find a way to serve God through our church. At this moment, I stand one person's effort and good will away from being home bound. This is not where I expected or wanted to end up at the age of 49, but between realizing that I was no longer a safe driver and some other mobility problems from my Parkinson's, I have had to come to rely on my husband for transportation ( I live in a town without a bus line). I also cannot rely on the strength of my voice like I used to. Last Sunday I spoke with my pastor. I asked where can I serve? I do not really belong. He answered quickly that I could best work through Facebook. That's really a continuation of what my Facebook has been. I realized that I have this blog, which I haven't written for since September. So I'm repurposing the blog today. Now it will be for personal as well as authoring purposes. I think that is the way God works - our independence becomes interdependence and our professional becomes personal, so that when we confess our weakness, God transforms it to strength and uses us.
Yesterday I went to the Walthall County Library in Tylertown, MS. I spoke for about 30 minutes on my life has an author and person with Parkinson's disease. I read some from Face It. Three very good parts of this day included: my voice kept on working and my vocal folds did not spasm, a very kind man from the audience came up to me. He said he had been a speech teacher. If a speaker is anxious about their voice, nearly always relaxes after a few minutes and the listeners (who I must remember are nearly always rooting for the speaker) understand their manner of speaking better and better as the talk goes on. The third very good part was I got to know Mr. Thornhill better during the car ride there and back. Besides keeping a tree farm in Walthall County; Mr. Thornhill works all the time. He drove to Clinton, took me to Tylertown, brought me back home to Clinton, and without coming in, headed back down the road to Tylertown. If that is not enough, this is a gentleman who decided to Hike the Appalachian Trail, by sections when he was 66 years old, more than ten years ago! Let me tell you, I am impressed like crazy. I think that my new person to model myself after is Mr. John Thornhill. Thank you Mr. Thornhill.