Parkinson's disease awareness month draws to a close tomorrow but Parkinson's will still be here. This has been a particularly rough month. I think it is no exaggeration to say that the last time I cried this much, I was an infant. My speech is unclear. I keep having trouble getting up when I have been sitting and I keep having trouble pulling up my pants.
Then, this evening, I realized that maybe what's been wrong is that I have been "off." I've been conservative with my Deep Brain Stimulation settings. Because I have not wanted to injure myself with out-of-control dyskinesia, maybe too conservative.
Ha ha! I turned my voltage up and I have not cried for over three hours! That's a relief!
"If I knew ten years ago what I know now," is something we often tell ourselves. Some of that knowledge can only be gained through living it because when we hear it, it seems so ordinary and unnecessary that we can hardly give it our attention long enough to even hear it, much less take it to heart. Nevertheless, I'm going to share some things my life and my life with Parkinson's has taught me.
Focusing on the chronic, progressive nature of Parkinson's will only cause you to lose heart. I'm not saying to lie to yourself or to present a false face to others. I am saying that if you can focus on things that are happening right now, you'll do better.
The best gift I ever gave my husband and my son was to accept help with gratitude. I used to get so angry with myself for needing help that it seemed like I was angry with the person who was offering to help me.
Sometimes you just have to cry. Maybe you don't, but I do. My particular case of Parkinson's has a lot of non motor symptoms. I know I would be better off if I could be more patient with myself but so far I'm still learning to live with myself in a body that cannot always listen to my brain. Crying has never lasted forever, in fact it usually only lasts as long as it takes my medicine to start working.
Be kind to yourself. Negative self talk only hurts your own feelings. If you wouldn't talk like that to your mother or your child, commit to not talking like that to yourself. Parkinson's disease is hard enough. Try not to add to your burdens.
The first several years may go much easier on you than the years that come later. Don't be discouraged when your health worsens, talk to your doctor, change your cocktail of medicines. You may add years to your body's functionality.
So if you pray or if you don't, remember these words. Repeat them to yourself. They will help you get yourself through.
Today (It can be overwhelming to think too far ahead. Stay with today).
Now. Here. This. (Enjoy today for what it is. Hug your spouse. Hug your kids. Call your parents. All anyone has is today anyway.)
Be kind to yourself. (You and your family will be so glad.)
This too shall pass. (Crying won't last forever. Nothing does.)
Just a Friday night. My husband is out of town. My mother is visiting but everyone has gone to sleep. In fact I was climbing (that's the problem. I KNOW I'm supposed to sit on the edge of the bed and rotate in. Tonight I was overly ambitious and I tried to climb in). into bed when my foot slipped on my standing leg. I sank down to the floor. No. Not fell. I ended up on the floor. I tried asking for help but my voice is not very strong and my son runs a fan for white noise. This renders me functionally silent. AND I KNOW that neither my 70 year old mother or my 14 year old son has any business trying to help me off the floor. So now I'm going to increase the voltage on my DBS, get up off the floor and go to bed for real.
April is Parkinson's disease Awareness month. Tomorrow April 11 is World Parkinson's Day and the anniversary of Dr. James Parkinson's birth. Since I couldn't sleep until I can correct my mistake, I decided to blog about it. That way you, too, can know some of the ways that Parkinson's can affect a daily life daily.
A few years ago, when I still felt like I could travel, and when Clark was in kindergarten, I took him on a trip for spring break to Washington D.C. where we visited my sister. The entire city was beautiful. Spring was in full command of the weather. Among the things we particularly enjoyed were the large planting of tulips.
Near the White House, close to the National Mall, there was a large patch of tulips in the shape of the numeral one. They were all red. They represented the First Infantry Division of the U.S. Army. Its nickname is "The Big Red One.
Saturday is World Parkinson's Day. The anniversary of the birth of the doctor who first wrote the official description of Parkinson's disease and formally published it. A red tulip was named for Dr. Parkinson.
When I took Clark on that trip, I had Parkinson's but it was so mild back then that I could look at a field of red tulips and not think of Parkinson's at all.
Clark has always had a different perspective on the world. He looked at that big field of tulips and focused on the smallest, most misshapen plant and named it and visited with it awhile when we entered the area AND WHEN WE LEFT.
Now Clark is much older. It has been ten years since I learned I have Parkinson's disease. Parkinson's has moved from the back of my mind to the front.
I recently listened to an interview between Krista Tippett and Bruce Kramer on On Being. Bruce Kramer had ALS (also known as motor neuron disease, or Lou Gehrig's disease) for about five years before he died last month. He said that when we are able-bodied, we often give people who are visibly disabled "the look." He said this look is filled with the feeling of "I could look right through disability and I wouldn't have to face its possibility in the people I'd look through." Bruce Kramer says often attribute disabilities to "the reason I'm not disabled is I didn't do whatever it was."
Of course he had not done a thing. No one with ALS or Parkinson's has done anything to cause or deserve their condition.
Maybe this is what Clark was seeing in that littlest flower. May we all take a moment to really see someone who is living with a disability, not just look through them. Take a moment to get past your discomfort and listen to their story.
Do you remember the Oldsmobile commercials from the eighties? That's how I am starting to feel about my brain.
I have been practicing walking without a walker in physical therapy. The last time I tried it was before my knee was replaced in November 2014. I favored one knee very strongly and I tried to walk like I always had. I wasn't too successful.
This time it is different. Nothing hurts, so the only times I limp are when I do so out of habit. We are trying to use neuroplasticity, the ability to build new nerve trackways to do old tasks. When I think "knee up" with every step, I am walking a new way. Almost "on a new part of my brain." I'm not limping. I told my husband that this kind of walking was so strange that it felt "fake." He said that he is not surprised. I'm not walking automatically, like I have for 48 years. It feels fake now until the new skills become habits. Well. I didn't expect this but it makes sense to me.
Today is the first of April. I know. It seems like a good day for joking. But this is no joke. About ten percent of the people diagnosed with Parkinson's each year are under the age of fifty. Now fifty can be a good age, full of promise. When Bilbo Baggins,the hobbit, turned fifty, he set out on an adventure with twelve dwarves and a wizard. When his nephew, Frodo, turned fifty he took the One Ring to Mordor to destroy it. When I turn fifty in January, I do not think I will be able to set off on any journeys but, if I am lucky, and if I stick to it, I hope I will be walking to the Clinton Community Nature Center; it is only 1/4 mile away. Once there, I can walk on the Natchez Trace, a footpath that has been followed for centuries. For a person living with Parkinson's, fifty is still young. Exercise is the only thing known to halt or reverse its progression. What if, during April, each person who can walk invited someone to join them for a walk? They could enjoy being enjoy how being outside makes them feel, and improve their health. Maybe two of them might even brainstorm up a cure for Parkinson's.
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."