2022 Quick Review

It’s been a while since I’ve written a Blog post here. I’m definitely overdue to provide an update. Last I wrote was way back in August 2022 when I boldly proclaimed to be training for an MMA fight. To read that post click here. An update on the fight preparation is provided below. Heading into 2023 my family is doing well. I’m doing ok. I really have nothing to complain about. We’re all generally happy and healthy. I’m surrounded by good people who care about me, I’m doing interesting and impactful work, and my employer readily provides accommodations. I don’t anticipate money issues despite a relatively high probability that at some point my Parkinson’s will have progressed to the point where I will need to go on disability. We travel and see interesting things. In fact, this past year we went to Hawaii!

Below is a slideshow of some of the activities from last year:

Future Outlook

The year 2022 was a transformative year for me in terms of coming to grips with my Parkinson’s diagnosis and what that really means for my future. In the first few years of living with this life altering disease, once I had recovered from the the initial shock of diagnosis and gotten through a short “mourning period”, I managed to live in an almost euphoric yet somewhat ignorant outlook on what my life was going to be like going forward. I envisioned myself somehow battling and overcoming Parkinson’s against impossible odds. The year 2022 was the year I believe I finally accepted that, despite all my “heroic efforts”, save for some miraculous cure being discovered, I’m not really going to escape.

I believe this acceptance comes from now, a short 4 and a half years post diagnosis, having witnessed first-hand the disease do its ugly work. I’ve seen friends lives irrevocably changed. I’ve now witnessed and experienced progression. Only a few years in and the pile of pills I take daily is mounting, my symptoms are getting more challenging to deal with, and the more time I spend in an “off” state.

Don’t get me wrong, life is still good. But as time goes on, in all likelihood my world will gradually shrink as I will experience decreasing mobility, less energy, and more time spent laying around. Most people would not be super excited about that prospect. I’m not. But what can I do? Well, it could definitely be worse. Also, I can always exercise my super-power of dreaming big.

The MMA Dream

So where did I leave off? Oh yes, I was training hard for an MMA fight! You see? Big dreams.

Here’s what happened when I started to train hard:

  • I was humbled – Strength is not enough to be a decent fighter. It helps a lot but lack of fighting experience prevents me from doing very well against anyone who knows what they’re doing. For me to get good, I need to train consistently.
  • I broke my foot – In the attempt to do said training, I broke my foot. Many years of wonky parky walking had never allowed my right foot to fully heal. Even though the training wasn’t particularly hard on my feet, it was too much for my right foot and I cleanly broke a metatarsal bone. I only recently got back into training in earnest for the fight after letting it heal for a few months. So the consistency I need to get good just hasn’t been possible.

Honestly, even now I’m finding it difficult to maintain a consistent training schedule as I’m still plagued by foot pain. Also, the training goes until 9:30PM so I often have trouble winding down and sleeping well on training nights. So for now I’m going to continue to train hard. But there’s no reason to risk hurting my foot again so we’ll see how it goes. Maybe it will just take longer than anticipated to get to the point where I can safely go toe-to-toe with a non-parky opponent. Who knows? One step at a time.

Despite the challenges of training for a fight, I’m very much enjoying it, meeting cool people, and learning some valuable skills. So even if it doesn’t pan out in the near future, the effort will not have been wasted.

In the meantime, I still have some learning to do, but I’m planning to try a BJJ tournament within the next month or so.

Good reads…

I recently read a very good book called Ending PD. The book does a good job of tying the steadily increasing rates of diagnosis of Parkinson’s disease to the relatively new phenomenon of large scale industrialization and farming. Over the past decades, these activities have resulted in huge amounts of chemicals being dumped directly into the environment. Some of these chemicals are known neurotoxins.

The book makes the correlation between increased chemical exposure to a sharp rise in cases of Parkinson’s seem pretty clear. So where does this leave us? I understand that the cumulative benefits of the Industrial revolution and mass farming are enormous. At it’s most basic, enough food to feed everyone and the technological enablers to distribute it. Certainly these benefits, in terms of improved lives, far outstrip a few unfortunate cases of “collateral damage.” However, a growing “army” of unfortunate individuals who suffer seems to indicate that it’s past time to address this problem. Fortunately, there are hard-working individuals doing just that, and are working hard to have these dangerous chemicals banned.

The book also takes the reader through an interesting history of the disease which includes a summary of available treatments over time. In the early days of initial “discovery” by Dr. James Parkinson’s, (who named the disease “shaking Palsy”) there were few options for relief.

“The unhappy sufferer has considered the disease as an evil, from the dominion of which he had no prospect of escape.”

–Dr. James Parkinson, “An Essay on the Shaking Palsy,” 1817

It wasn’t until the 1960s that it was found that Levodopa offered significant but temporary relief. To this day, Carbidopa/Levodopa (C/L) remains the most effective treatment for Parkinson’s.

Parkinson’s is still poorly understood and sadly this leads to needless suffering. One such example given in the book is of a 78 year old man in a nursing home who had been bound to his bed for several years. A visiting neurologist recognized the signs of Parkinson’s and administered Levodopa. So extreme was his improvement that the man was soon walking and even leaving the nursing home without assistance. When asked to write a sentence he wrote,

“The sun has started to shine again in my life”

–Dutch Nursing Home Resident

I get a little emotional when I think about my own first experience with Levodopa. Though my transformation was not quite as extreme as the Dutch Nursing Home Residents, it was still an incredibly powerful experience.

All in all Ending PD was an informative and enjoyable read

Climbing

The climbing group I regularly climb with is thriving! The group has 3 sessions that meet throughout the week, one at the Sportrock Sterling, VA location and two at the Alexandria, VA location. There is more participation than ever before for plenty of opportunities for much needed parky comradery. I recently enjoyed the accomplishment of completing a 5.11 graded route on a 60 ft wall! This fall, I participated in an outdoor climbing session coordinated by the group and it was amazing! To find out more about the group click here: Upending Parkinson’s.

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