PN and handwriting …

Wrote like a left-hander? If Sister Gregory or Mrs Spin had said that to me, that would have thrown me off stride, too. From the get-go, I was decidedly a right-hander. I was often told that I 'threw like a girl,' but that wouldn't have knocked me off balance. I did throw like a girl 🙂

Hi, cheyne (@cheyne)

I gave up any aspirations I may have had about pursuing architecture between my high school graduation and the start of college. I shared my change of plans with no one, not even my parents. What drove me away from pursuing architecture was not the drawing––I loved the drawing––but the math. That’s just me, you see. I’m not a math guy. I was misdirected by an uncle who, hearing that I was going to an art school, persuaded me to choose a major in a field that promised high-paying wages; ‘Forget photography or advertising art, nephew Ray. Go for architecture!’ So I did. It wasn’t until I got into college that I was able to put myself back on a natural track (‘natural’ for a guy like me) and highballed into theater arts, where I ended up spending my whole working life. In theater, no one seemed to care much about whether I could write legibly or not. So long as I knew my lines and entered on time. 🙂

Ray (@ray666)

Hi Ray,
It's funny I was always told I had not brains and was the black sheep of the family. Started out as a watch and instrument maker which took me to USA for 6 years where I discovered I was more than good in my field. When I returned to NZ I took on a job of designing and building scientific instruments for the NZ government, during this time I discovered I had skills that where there all along, unrecognised. I ended up leaving that with RSI in both arms returning to the watchmaking bench 11 years later. The abilities never left me and eventually opened my own shop. Twelve years ago I was stuck down with a severe bout of Campylobacta which we are now finding gave me Autonomic polyneuropathy and damaged kidneys as they shutdown for 18 hours at the time. I'm pretty much self taught in my fields and formally designed and built top class RC yachts. Now I find all the skills I had to teach myself are still there, mathimatics survives the ANS as does my ability to drive really well. Many years of motor racing and it has become automatic responce with driving. It is the autonomic features that are causing me troubles, the things that the brain does through habitual practice remain as sharp as ever only let down by the motor skill randomly corrupting the instructions to do as instructed. It also has a firm hold of my bowels, bladder and digestive system permanently interfering with the functions and loves to play havoc with my lungs, blood pressure, stability, memory and brain. Being someone with precision skills it is desastrous to not have those function when I command them.
I now spend my days playing with CNC machines I have built, which keeps the brain occupied and stops the hybernation I would gravitate to otherwise.
Cheers

Hi, cheyne

Whereas you were told ‘hadn’t the brains’ (which is impossible to believe!), I was told just the opposite: everything I did was applauded by parents and teachers alike. Being treated like that is equally damaging, perhaps more so. I was set up to believe I couldn’t fail at anything, no matter what I might lay my hand to. The comeuppance came in college; suddenly I was surrounded by people who could do things better than I could. Still, a belief in my invincibility lingered. That sense of invincibility persisted throughout my life, down to these recent years. Hearing that I had PN, an incurable disease, was a tough morsel to swallow. ‘What do you mean by incurable, doctor? Don’t you know I’m invincible? You’d better recheck your charts.’ What a fool I was! These past 18 to 24 months (since my diagnosis) have been a lesson in vulnerability––in vulnerability and in how to ask for help. I still tell friends not to rush in to help me unless I’ve asked for help. I’m stubborn that way, and I expect I will always be. When I’ve asked for help, and a friend steps up to lend a hand, I’ll be sincerely grateful and sure to say so. But if I find help is being offered when I’ve not asked for any, I’ll say––as politely as I can––‘Please, let me do this for myself.’ So, on the one hand, I’ve learned the rewards of vulnerability, but on the other hand, I’m still ‘me,’ a stubborn loner who enjoys being a loner and wishes to remain one so long as body, mind, and spirit hold out.

Cheers,
Ray

Good question Ray

Hi Ray,
I have been battling this for 12 years and only had a name put to it in the last few months when my blood pressure started running amuck. It explains a lot, not that I am ready to fully accept it, yet. Eventually I will have no choice but to accept it.
Seems we are of similar minds.
As yet I have not accepted any help or favours from anyone and don't expect to anytime soon. I get a little brassed off from the continual offers, but have to be mindful they are well meant. I didn't realise I could do the things I have done until I started designing scientific apparatus 30 years ago. It took me by surprise, I could do what everyone around me had the training and paperwork to do, yet I had none. Seems I have seat of the pants nous. In those days I was the only one who could run their CNC machines, something I had to teach myself. It is now my hobby as I can get a machine to do what the hands don't always want to do.
I came alive so to speak and never looked back. I seldom give up on a challenge which has been the bain of my life. I take on the seemingly impossible to prove I can do it, to myself.
Finding no way around under or over the ANS is stumping me. possibly the only thing I can control is the rate at which it is esculating. A battle I'm doomed to lose and can't accept failure. It is tempered with the fact we all die in time anyway.
Cheers

Ray - yes...check writing an issue. I fact, getting low on checks, I just put in an order and did not order 80 checks this time, I ordered 120 to allow for tearing some up!

Ed – The image of you sitting there at your desk tearing up one check after another reminds me of the scene we often see in movies – the scene that has become a bit of a cliché – of the frustrated writer tearing page after page out of his typewriter and tossing them, crumbled, onto the floor. – Ray

Good morning, cheyne

My own blood pressure has been something of a teeter-totter these past few years, despite the variety of hypertension medication my primary has suggested I try. So far, however, even though my numbers go up and down, I’ve had no ill effects.

Yesterday, I said something that made light of my worsening handwriting and my PN, how no one with whom I shared the stage ever gave two figs for my poor penmanship. That may have been true, but I never meant to imply that my neuropathy wasn’t a problem for me professionally. It was my neuropathy, not my getting older, that made me decide to give up acting. In my last play, I realized I was paying far more attention to not falling down than I was to my lines. Finally, I said to myself, ‘This is nutsy!’ and gave up performing, thinking at first it would only be short-term, until I got my balance ‘fixed.’ Learning – and then accepting – that my PN was incurable was a huge uh-oh—the hugest.

I’d best send and get cleaned up for today’s therapy sessions. I’ve got both kinds today: physical therapy and occupational therapy, one right after the other.

Have a grand Thursday.
Cheers!
Ray

Hi Ray,
I find that the messages from the brain are getting lost or confused on their journey to which ever particular muscle is required to do something normally. So far it only tickles the heart, occasionally aside from the permanent organ dissruption.
Incidentally we are a day ahead of you, Friday already.
After Campylobacta I had a severe bout of vertigo where I couldn't roll over in bed let alone get up. I have managed to deal with it and find as long as I concentrate on what I'm doing and try not to move the head too much I can ignore the vertigo. Everytime I forget myself I have a sudden urge to kiss the ground!
I consider myself as lucky with little or no pain but then I have been sucking up pain for years without pain killers. Possibly addicted!
I have trialed every medication known for blood pressure and reacted badly. I'm now on the last one which has a reputation for killing kidneys. Curiously it hasn't touched my kidneys yet and the body has not reacted. Then again I'm on a lowish dose and it is not doing anything for the blood pressure. I persist with it as it is stopping the severe migraines I get with my 210/120 blood pressure. I know I can sustain 240/140 but prefer not to.
I'm unable to stomach, literally, medications and have a theory the ANS has something to do with it. Give me meds via injection and I'm relatively OK. I remember as a child not having too much trouble with the everyday meds although I was never allowed the community vaccinations. Since the kidneys are not too good I have been taking vitamin D3 and latterly B12 which is supposed to help with the building of nerve endings besides keeping one alive. Since 2018 I have never had the flu or a cold despite my wife bringing them home to share!
At the end of the day as long as I'm able to walk, talk and cause trouble I seem to be OK. My only physical restraint is the ANS when it decides to do something different than what I want or the very rarely occasion I'm momentarily paralised from the waist down.
Thursday was a relatively good day.
Cheers