Where to start?
- I spent many years coercing computers to my will. I started on PCs before IBM thunked up the name.
- I’ve recently diagnosed with HMSN Hereditary Motor & Sensory Neuropathy or Charcot-Marie-Tooth disease. I’m a colon cancer survivor, and quite insane (but non-violent). Expect advocating for the disabled from this blog.
- The most surprising is I’m a suspected (maybe confirmed) Genealogical Terrorist.
As a student of history I was disturbed by the secret powers being granted in response to the Terrorist Boogey-Man card. It’s eerily like Nazi Germany.
I commented on the issue a little, having no fear because I was doing nothing illegal or suspicious. I never expected their beady little, secret eyes to land on me. We’ll get to the ‘crime’ in a bit. I just have to wait for it to come around on the keyboard.
An interest in Genealogy is implied in Genealogical Terrorism. And that’s all I was doing. I made amazing progress finding the paternal side. Peter Ruhl came from Germany in 1727. My paternal grandmother’s family was in MA around 1630. I never expected that.
Mom’s side was more challenging. She’s English, a Geordie transplanted to the Midlands. All I had was memories of her oral history of the family I but for a couple exceptions, never meant.
Census records are a good source but the UK seals them for 100 years instead of the US 73 years. The 1901 census that could give me more information on my grandparents was becoming available. With a Pay Per Page viewing charge.
It wasn’t that much and I knew the area to check and the name wasn’t like Smith, not many hits on a search. I splurged and sent about $25 to the UK Archives and went looking.
That’s when weird things began happening with my bank account.
My fault, I believed Dubyah when he said the UK is our BFF Allies. Silly me!
All off a sudden, with more than sufficient funds, I could not obtain cash from the bank. I could make debit card purchases, no cash back. But those transactions behaved weirdly.
They’d appear as Pending immediately, vanish instead of posting, then come back a few days later to post.
I talked to the bank and a very nice lady explained, “I can’t tell you what’s happening to you account.” My reply was a less nice question, “What do you mean, you don’t know what’s happening?” Her reply gave away the National Security Letter on me. “I didn’t say I don’t know. Listen carefully, I said I can’t tell you.”
Yeah, I sent substantial funds, $25, to those Limey terrorists and I’m half Limey to boot. OWG, watch-list him.
So I have fun annoying Die HomeStapo and the alphabet minions whenever possible. If they’re watching anyway, I might as well have a laugh at their expense. They’re wasting my money.
I’m aware that I’m out of sequence with the bullets. I got your sequence hangin’. The segue from Genealogical Terrorism to Genetics is smoother.
Hereditary Motor & Sensory Neuropathy or Charcot-Marie-Tooth disease, I hadn’t heard of either one before. I had heard of Muscular Dystrophy but thought it was A disease not 40 or 50.
HMSN is a nerve disease and is only technically MD. My muscles work fine if nerves talk to them, But atrophy when nerves quit talking to them. The longer nerves are most affected so my feet and legs don’t work well any longer. I can still gimp around on a limited basis with a quad-cane. But something like walking on the grass, I can’t risk.
It’s a genetic disease and I’ve had it in a mild form for years without knowing. My neurologist started rattling off the classic symptoms to support her diagnosis, things like weak ankles, high arches and hammer toes. I never knew high arches were symptoms, just a reason for Mom to bitch about finding shoes for me.
I was never much good at sports, I was more interested in learning and reading anyway. I thought I was just the nerdy fat kid, no good at sports. As Sheldon said on Big Bang Theory, I always knew which team I’d be on when choosing sides. It’s the team that has last choice.
In High School I broke my wrist playing football, in PE, not as a rah rah Jock. I was backing up waiting to see if a pass might head my direction (doubtful but anything could happen). I stepped is a small depression and was falling. Foolishly, I tried break my fall with my right arm. I broke the wrist instead. It never got set correctly and is a persistent reminder of why I don’t like football.
In later years, arthritis in the knees began limiting my movements. I had to keep distances minimized but could still do normal things.
But I began having balance issues. I couldn’t stand still in one spot. I had to constantly do a little forward and back dance. About that time I realized I couldn’t move my toes any longer. I complained to 3 quack? about my toes. None even examined my feet.
I was tripping and falling more often and I isolated what was the problem and mentioned to the 3rd quack? on a subsequent visit. I said my foot is drooping. He cleverly translated than into Latin. Toes that don’t work, no biggy. Ataxia, here’s a stack of referrals. They’ll make your appointments on the way out.
By the way the fun thing is Doctor’s don’t have rubber reflex hammers. They seem to have gone the way of the buggy whip. The primary quack? used Karate chops. A neurologist used the tuning fork handle. Reflex results, I don’t seem to have any.
More neurological prodding and poking involving needles, electrodes and stun guns. She had to crank her stun gun to the max to get the readings she wanted. An unpleasant experience.
She crunched the Nerve Conduction & EMG results and came up with CMT Type 2A1. Say what?
The best analogy I’ve come with nerves as spark plug wires. If you have an engine with missing cylinders. It could be bad plug wires letting the spark short to the block, CMT 1. Or the wire inside is bad and the spark doesn’t get through. That me, Type 2.
If the Neurologist is correct, things aren’t going to get worse. But, it usually hits at a younger age. I can still get around, mostly. Walking I can usually do. Keeping my balance without my feet helping is the problem.
But some days, I have ‘Funny Walk Days’. My left leg behaves a bit spastic. I can’t always smoothly lift my foot and place it forward. I have to jerk it. And I look a lot like the grant candidate in Python’s Ministry of Silly Walks. But even on those days I only need avoid places that challenge my balance. I can still get in and out of my apartment. But I’ll avoid it on those days if I can.
While all the other stuff was going on with Neurology, I had the gastro gang working on me for digestive issues. They started a roto-rooter procedure on me and hit a place the scope couldn’t go through. Biopsy said benign. Surgeon said probably cancer and was right.
To be honest, I never worried about the surgery, whether or not it was cancer. Cancer would only kill me at worst. It’s a good day to die. I was more worried about being confined to a wheelchair for a long miserable life.
So far, I’ve avoided both. Surgery got it out, it hadn’t spread, and lymph glands clean. A recent CT came back OK so I’m feeling good about that front.