Today is the Autumnal Equinox, 23rd Sept. (yes it’s 2 days “late” because the Earth is a bit behind in its orbit). Last year it was also on the 23rd, the day I had my haemorrhagic stroke (26/42 on the severity scale). In fact when I got to the hospital, barely conscious, the nurse asked me if I was in London ? I thought it unlikely, but gestured “no idea”. Then she asked me the date. Since I had severe aphasia, I answered “Equinox”, one of three comprehensible words that I uttered that night. Unfortunately the nurse had no idea what “Equinox” meant and marked that question with a cross. I spent the next 3 weeks in hospital getting my BP down by tweaking the meds (it was 269/198 during the stroke) and another 4 weeks in Rehab. Today, thank the Lord, it is 133 / 87, right where they engineered it to be.
Fast forward a year. I had developed spasms in my leg “out of the blue” after 6 months, and the cycle “good-day / bad-day”, which remained unbroken until this week ; the first half was good(ish) and the second half bad (an unprecedented 34 hours of locked glute). When I complained about my lack of progress, my Chinese Dr. pointed out that a muscle that hurts, is better than a muscle which is paralysed (and since I started off with 50% of my body paralysed it felt fair to point out that progress has been made).
Now I face a mental battle. Putting all my might into exercise sometimes backfires, as it did this week. What took a beating were the muscles in my thigh, yes, but more importantly … my morale. Obviously, this is not the first time I have felt defeated, and I’m quite sure I’ll fight back, wiser and stronger for the experience. But when muscles are locked tight every other day, the solution feels more remote than the summit of mount Everest. And I’m the only one who can save myself, that’s clear. My mindset is the most important component of my body. My brain power and will is the only thing that will see me through. Once I get past the thick of this storm I’ll be in the mood for cracking jokes and having fun. Right now I have the Lord, my Wife, my Rehab (done with love), listening to music, my support team (including this forum) and a very few friends.
Wishing all stroke warriors stamina and success,
Ciao, ciao, Roland
I think you’re writing about them is one of the valuable resources in this forum for all who read it. Motivation effort and results .
I have a suggestion for you the repeating theme possibly having more determination has ability to absorb at this stage?
I suggest when you get a lockup day you examine the exercise you did the day before and reduce by by 2/3 but you double the number of exercise sessions the net effect being you spread exercise out but you reduce its intensity and that you work at the this level for a while
if you get a lock up you the same strategy to reduce intensity but nearly maintain quantity
I did consider amount of adjustment to be something illustrative rather than prescriptive strategy
I spread my treadmill sessions out to 3 times a day… exactly as you suggest, less intense but more frequent. But the concept is a good one and worth being reminded of. Today is locked glute day, but I did no exercise yesterday (for the first day in 8 months). I like to do something each day, no matter what, so yes, even yesterday I did a bare minimum, let’s say.
My task is harder than trying to break the Enigma code, but when I crack this one (or my body/brain) does I’ll certainly have something to celebrate. Thanks for your encouragement, Simon.
@pando in the post titled “Can’t go forward for going backwards” did you get my video on the lunges?
Helpful with the locked bum. They are easier if you put your front foot on a chair and hold on to something or someone.
I feel for you brother. Mindset is fine and works sometimes, but often the body and its stubborn problems win the day. It is raining here today and my body says “oh Rain…I need to tense up today”.
The primitive spine sends out signals that are supposed to be protective…OVERLY PROTECTIVE. The poor brain sends signals too weak to relax the muscles.
I have the same team: Wife, Lord, Rehab, Pals, and my good old anger at this horrible thing called spasticity.
In the book “stronger after stroke” the author mentions anger as a good weapon and incentive to work harder and fight harder,
So often, I’ve had a day where I’ve worked out for two hours, meditated, prayed, ate good foods, taken my meds, slept well thinking surely tomorrow I’ll be so much better. Only to find out the next day:
It Ain’t Happening.
Sending out good vibes and prayers to you Roland.
Your post speaks to me. I did get the lunges, but I fear they are beyond my abilities.
Yes, the brain signals are too weak to make a difference, but one day, hopefully, it will be within my conscious (or unconscious) grasp. I remember taking control of certain muscles in my leg (I was finally able to relax them 6 months ago). These were big muscles, like quads, easily visible. What I’m dealing with now is well below the surface, and is possibly a group of muscles (piriformis ?) below my glutes / hamstrings. I’ve read that book. I agree, anger can be used to advantage.
For the moment, I battle on, looking for a solution (and exercising, albeit with caution)
@pando it sounds really tough for you but maybe a change in your good day / bad day pattern is a sign of progress?
I agree with @SimonInEdinburgh re reigning back on your exercise & finding a level that doesn’t lock you up the next day. It’s difficult when you just want to get back to full fitness but sometimes pushing too hard can mean it takes longer ultimately than if you had done a bit less. Maybe even have a day or two off exercising each week. It’s all worth a try until you find the right level for you.
I really hope year 2 sees the locked glutes disappearing.
Roland - am I allowed to say happy 1 year strokeaversary or is that too much? I guess maybe a glad you made it through the first year would be more appropriate!!
But I am so glad to have met you and you have really helped me even in the limited interactions we have had!!
Keep cool and here is a picture of a one year old polar bear to cheer you up!!
Thank you so much for the kind wishes. When I had my stroke (I was playing a competitive backgammon match online) I said to my wife “Run and tell the neighbours I’m having a stroke…”. But I don’t know how I knew it was a stroke. I only had 30 secs between my arm dropping, my legs going limp, and total aphasia.
Anyway, what I didn’t realise was the incredible uphill struggle I would face for the rest of the year. Your “hidden disability” badge says it all, for my parents in law couldn’t understand why I still couldn’t walk after months. “It’s not as if you’ve had a heart attack!” they claimed. “Well… it’s sort of the equivalent… just in the brain”. Nah, they couldn’t see what the fuss was all about. Surely enough, since my hand recovered well (there’s a special reason why, detailed in my recent post about “remapping my arm”) some friends come to see me, and since we’re all sat down, they totally forget I’ve had a stroke… even worse, they don’t realise having a stroke is any big deal
Well it is a big deal, and it has given me a new appreciation for life. When I meet stroke survivors in my After Stroke group, I can see they have made a huge journey that most people will never know about, and may it remain so.
Again, big thx, and much gratitude for your support…
Hope your couch was cosy…ciao, ciao, Roland
I really do understand what you’re saying about people not understanding as I’ve said so many times - just because I’ve lost 3 stone and look trimmed and presentable it’s because I had 3 strokes and one of the only things I can really do for myself (even if it takes a little sit down after the shower and after the socks and after the trousers etc) is try and look good - for myself mostly. I don’t care what other people think.
But have they realised a bit?! I have had an uphill struggle with even very close friends and have lost some in the process.
It’s difficult for me to say for the 10th time IT IS NOT MY RIGHT EYE - it is in both eyes. Sorry to shout but it really gets me going.
So I shove hemianopia printed explanations in their face and say look up strokes plaese please please.
Soemtimes it works - sometimes it doesnt.
My neighbour - who helped get me in the car to the hospital 10 months ago said to me 5 months ago “You need to more for yourself”. I basically have not sopken to her since!!
But I try and stay cool.
I am with you on the journey mate I promise. I have found more understanding on here in 2 weeks than in 10 months from friends and family. Apart from JP.
I’ve given up on trying to explain to people what it’s all about. They have no idea, and how could they? Instead, I get “you’re looking great, you’ve lost weight”… they mean well, but understand nothing. After giving it some thought, I actually hope they never find out about the horrors stroke survivors battle.
I don’t have eyesight problems (but I do have unexplained problems with my right eye) but I’ve often thought about those who have peripheral, or kaleidoscopic vision. When I was in Rehab (Hospital), Keith, the bloke next to me would try to get out of bed to go to the loo in the middle of the night (forgetting he had had a stroke). He couldn’t see to his right (where I was). Anyway, I would ring my bell, nurses would come running to me, then I would redirect them to save Keith from falling flat on his face. This would happen at least once a night, every night, until once, when the nurse took too long, and Keith did go flat on his face. Blood everywhere, and back to the main hospital to get scanned etc. Only, that kept me awake for 11 hours while we waited for an ambulance to be free.
This morning I woke up screaming and crying. Yet today I rate as a good day & my glute was unlocked, but alas, my leg muscles were visibly spasming and wriggling and writhing about all on their own, as if some alien were crawling about under my skin. I’m off to my garage to do some minimal treadmill… because I’ve learnt that doing nothing does not help an angry muscle.
I too have lost friends. Some ran a mile, never to be seen again, when they heard I had suffered a stroke. I’m not a fun loving person any more? Possibly, but it’s only temporary. I’ve heard these sort of spasms eventually subside… so fingers crossed.
Wishing you a relaxing Sunday, ciao, thx for chat amigo,
Ciao Roland
@pando Roland, I’ve had those spasms for months now and getting worse. I’ll be in bed all comfy and cozy and all I need to do is move a right finger and my whole right side from neck, arm, hand, down to my toes (back included) spasm as if, as you say, some alien force is shaking me. The anti- spasm muscle relaxing drugs don’t do a thing to help. If the spasms are bad, then I can expect a very stiff day all day long. I’m so tired of thinking about myself all the time. I’ve become the center of my universe.
“Beam me up Scotty” lol.
Yes, if we don’t keep moving and stay idle, the spasticity gets worse. I, like you, am having a bad day brother. No keyboard practice for me today, my hand is cement.
Regards and keep the faith.
Derek
I try and be fun but a lot of the time I am tired and miserable and everyday I can’t see well and people don’t get that I have changed but in some ways for the better. I don’t need them to teel me what if this what if that and I should do more. F off. Probably why they ran!! But some have stuck around and tried to understandand I love them. One of my best mates - Chris - calls and says ‘are you calm today’ I say ‘i’m never calm but I am not in a shouty mood’ and he will visit. if I say ‘no not really’ he will say ‘do you want me to come round or be left alone’ he actually gets it!! love him
Oh ok bye bye then - and don’t come back if you are not going to try and understand please (obvoiuslyI don’t really mean that to the polar bear…
Stroke issues are really hidden. I never knew myself what adversity I would be facing 1 year after my stroke. Well, now I know… but I also have a new appreciation for life. Let’s hope when things settle that we will indeed be stronger & wiser, good luck, kieran
What you describe sounds so extreme.
Does hyper-tone depend on the weather?
One day, if we, and those stroke warriors who battle with spasms and spasticity put our heads together, maybe some new wisdom will come to light? or maybe we can learn to pacify these pesky aliens?
I made a bullet list of things to do that help me
I am going to research all manner of stretching now
How would you feel if this repository of my stroke guide posts was given to a machine learning algorithm for artificial intelligence to pull out relationships between therapies and results
If the capability isn’t quite there yet (and actually I think it is and will improve rapidly with time) it isn’t far away although the ethics questions I don’t think have ever been framed, or posed let alone discussed and brought to an answer!
I think it would be in our interest to encourage the use of data to find useful therapies but it’s by no means an easy assumption because (probably) it would require everybody’s consent - relatively easy if it was in the sign up criteria hard to apply in retrospect I suspect
I feel it’s something that should already be taking place. Of course half of my tips on my panic day bullet list have no, or little scientific / official standing. It’s just what works for me. If looking at my Astute class model makes me happy, then even that makes my list. It almost does. Listening to music does.
Well, it’s a very constructive thought. I wonder how many miracles it would require to go ahead?
Hi Derek,
I noticed my muscle tone worsening ( getting too tight ) on my affected side. So I decided to incorporate more stretches ; particularly the hamstrings this morning. In my exercise folder I came across this : muscle spindles, connecting to the somatosensory cortex, etc. Americano, but informative. I feel you probably know all about it, but anyway here it is
@pando Ha Ha Roland I am used to the “Americano”. I have two accents: New Jersey American and Scottish. This is a good video and thanks. It reminds me I need to stretch more. More rain today and very stiff in hand and arm. A bit difficult to type. For my hamstrings I do the stiff-legged deadlift and hold the bottom portion for 20 seconds and do as many sets as is comfortable. So…I stand with feet shoulder width apart and holding two light dumbbells 5 pounds (we still use good old “pounds” here). With legs very stiff and your arms straight and hanging like ropes bend over forward and try to touch your toes. Hold in that position and after 20 or so seconds, slowly stand up straight again. This works the hams, bum and lower back.
Where would we be without YouTube eh? Amazing.
Carry-on my friend.
Derek
