You know when you’re stuck with a problem and can’t find an answer? Then it’s time to make up your own solution. We’ve talked about using a metronome, isometric exercises with a spacer ( a weight ) between my knees to deal with my locked glute day, grabbing a broom-stick for exercising, improvising different techniques and inventing ways to cope here and there. I’d also love to know how many times I’ve tried something which must have come close to solving a problem… today I completely stretched out my leg, as if yawning. It has helped my tight glute, but not solved it.
I remember 5 months after my stroke, I was desperate to feel something / anything in terms of sensation in my hand. So I made up a sequence of exercises which I went through each and every day for a month, until, using all my will-power I finally reached a eureka moment where I felt an object in my hand for the first time. I’m sure I didn’t make it happen all by myself, but at the very least I must have stimulated my hand.
What invention did you make up to deal with a problem or situation you faced ? I’m interested in any story that solved a problem, even partially.
Not an invention but a great aid in getting the balance right between physical/ mental activities and rest periods. My precious egg timer. I’ve always overdo things and for the first year and more suffered bad fatigue and depression by pushing myself too far. someone recommended a watch that buzzed at intervals, used by folk who need to take take regularly medication to remind them . I settled for the egg timer . 20 minute period of activity then rest. It worked for me and I used it for a year or more.But using it regularly again now to time my reading. Old habits die hard , have difficulty putting a good book down , then, eye and brain pain.
@pando as you have probably seen in my posts I am “BIG” on experimentation. I think my problem is not sticking to my personal regimens. Its always…“well I’ve tried this for a week and…nothing”, LOL.
I am sticking to my exercise movement with resistance, then freehand, then mental image of said movement, all with focus. The jury is still out and too early to tell the result.
I’ve noticed that my “homework” is much more valuable than my 1 hour therapy twice a week.
I’ve backed off spending too much time in any meditation. It gets too comfy and often turns into a nap.
Movement is key.
With spasticity, Slow is the way to go, in exercise and daily tasks. I was making a frame for one of my paintings last week in a hurry for an upcoming show. The hurry made me seize up in rigidity and pain.
Same thing happens when I cook for the family. Last night I made a big salad with lots of fresh veggies,
hard boiled egg, bacon, and Tuscan Balsamic vinegar dressing. Garlic bread on the side. I took my time and focused on each movement of the process…sort of a Zen mindful activity. I really enjoyed it and no complaint from the old muscles. If I could only accept and stay in the “Now” all day. But it is hard for all of us I suppose.
I spend the whole day experimenting (usually every other day).
I also get into trouble if someone hurries me along, or waits for me
I like your discipline in slowing things down. Great technique.
I’ve not completey understood something: If you can make a frame for a painting, does that mean that you could try painting? Is it a question of not being able to use your dominant hand?
I recently have been practising the piano for 30 mins a day. The result is not very pretty…yet… but never mind. Oddly enough, I have started feeling the return of weight in my arm these last 3 days. It’s a breakthrough for me.
I’ve been stretching my locked leg out today… like you, it’s too early to make any conclusion.
@pando hey Roland. I paint with two hands now. It goes more slowly and I’m not a such a photo-realist anymore…more impressionistic and loose. I’m just slow and a bit stiff on the piano. I’m good for about a 1/2 hour, then my hands start really get rigid. I keep at it everyday.
I’m capable to safety use my chop saw for framing and gluing the miter edges. I then spray paint the desired color.
My dominant hand can hold things, but it shakes and feels like I’m wearing a very tight rubber glove.
I see ; but things can only improve for you.
I am often torn between listing all things I can no longer do, and all the thing I can do.
For, one ( almost certainly the same as you ) I wish I could type with my dominant hand
I have the motor skills, but cannot feel if i have struck a key or am holding it down.
@SimonInEdinburgh @pando
I went to a very large and famous facility in New Jersey. I had PT and OT 1/2 an hour each, twice a week.
PT focused almost exclusively on walking and balance. OT worked on fine motor skills like picking up a hundred pennies from a table and other game-like activities. These people were very kind, but seldom worked on my key issue: spasticity. They said the term was out-dated and it was now called Hyper-tone.
So…I had to come up with my own at-home moves that would help. Of course, the piano was great for the hands, although clumsy. I bought a huge white erasable marker board to practice writing ( such horrible hand writing). When the dish washer needs emptying, I make sure to tell my wife that I want to do it. The hard thing about that is my back tensing up.
A movement I also find helpful is to stand there and take everything out of my medicine cabinet or kitchen cabinet and then put it back in, with my affected hand. I used to paint at an easel while sitting and now after reading that standing is good for spasticity, I now stand as much as possible. Sitting too long makes it worse. Needless to say walking is a wonderful exercise while the weather is good: treadmill or stationary bike in winter.
As far as grasping things, I can pick up a mug of coffee or tea but getting it to my mouth is tough going.
So of course, I practice it anyway.
Roland, before I go to sleep I picture my piano keys and mentally play memorized pieces of music moving my imaginary fingers. Or I’ll do the scales.
What really is frustrating is the fact that I can do 3 sets of 20 sit-to- stand squats from a chair, but after half an hour at the computer, I can hardly get up.
I think I’ve mentioned before that I have a complete gym in the basement and do strength training 3 times a week. Once isna while I’ll put on some good music and do some dancing til’ I’m pooped out.
Mind you…all these things are done with stiffness and some pain that does not go away. At least “yet”.
I’m convinced that researchers have a grasp of what causes spasticity as in the lack of communication between brain and muscles. Neurologists like to throw drugs at you, and for therapists its stretch, stretch and then…stretch. I think what we creatively do at home and share with other survivors is key.
Roland: I’ve found some help with my right butt cheek and hip is ankle weights and a kind of “marching” raising the leg high for many reps and sets, but not too heavy a weight. Also lie on your belly and raise your leg up with the weight on. Try this without the weights at first. Easy does it. when standing, hold on to something.
Best wishes to all and I think that creating new ways to treat our condition is also good for the brain that got us into this in the first place…lol.
This is fantastic, Derek
So many good tried and tested tips in your post
My physio likes to call my problems spasms rather than spasticity ;
I’ts pretty clear though that there’s a neurological element, but at the same time my brain can influence my condition. It’s borderline control that I have, and the one day good, one day bad is a most curious phenomena.
What a fantastic reply. There are so many points that you make that make perfoect sense. It’s clear you manage and make up all your physio, according to your increasing abilities and needs.
While I had my affected arm “remapped”, I could not use it as well as one might suppose ; the difficulty then and now is that my delivery system is weak in certain areas. It is strenthening, but I believe you have quite a bit more strength in your right arm than I. I’m glad you’re really gaining so much use lately.
I agree about most physios, but I have stumbled across two that are rather good. We communicate well, and that makes up for exercises that I feel are not doing anything ; often it may be a lack of understanding one side or the other.
Thanks for your contribution, Simon, I’m going to reread your post again see if I’ve understood everything. Middle of lockdown must have set you back quite a bit. I had an online bio-mechanic, but found it a bit one-way.
I need to use this technique! Perhaps it will make it easier to avoid the pattern of one good day, then two bad. When I feel energetic or have more clarity than usual, I get excited to take advantage of it, and overdo.
Usually it happens that way. One day I will be almost as before strokes, with little to no fog, okay vision (not normal but best it gets since stroke) and quite a bit of energy. I overdo it, then the next day sleep a lot, and the second still foggy brained and shuffling around like I am 90 instead of 58. I just hate to waste the energy. Do you get like that?
I have wondered if rehabilitation is subjective to each survivor, as our brains are wired uniquely, then surely it would make sense that certain actions may produce different results. I would expatiate on this but it is 10 am, and my brain hasn’t quite come to grips with the day yet.
On the subject of homemade solutions, I have found that the “one action” technique has helped me manage fatigue. The idea is minimising a process so that it only requires one or two actions, it takes thinking ahead and some planning, but it has made life easier.
As my condition centres around cognitive visual-spatial issues, I haven’t found anything that immediately shows short-term improvement, however, understanding how the brain interprets light and movement has given me some strategic advantage over the condition. I am also interested in the placebo effect, I wonder if neurones light up as a result of it. As a crude example, if I wore a particular crystal around my neck, and was convinced that its healing properties aided my walking, does the brain react in a similar way to doing an activity that does aid walking? And if so, will it attempt pathways in a similar way? This is just speculation, as I don’t have the rigorous cerebral knowledge I would like to ascertain if I am just thinking guff or not.
I’m 59 today, Got the flu for my birthday,
On the very best day for an hour or two I probably forgot I’d even had a stroke
I can’t climb the stairs as well as my father-in-law, he’s 91
Penblwydd hapus I hope you got some other gifts to cheer you up, and that you have organised an ensuing birthday day without flu. I am to believe that some people like to have a birthday week.
I mentioned similar in another post about walking distances, basically at the end of your day you should always have enough reserved energy in your back pocket for emergencies. That way you don’t burn out and you won’t lose the next two days recovering.
We are not 21 anymore, we can’t pull an all-nighter and get up all bright eyed and bushy tailed next day like we used to, so always keep something in reserve
I hope you got some other gifts to cheer you up, and that you have organised an ensuing birthday day without flu. I am to believe that some people like to have a birthday week.