Here I am again complaining, almost a year out , ten months of therapy, walking, going to the gym, parkinson’s boxing, every medicine under the sun and I am still even stiffer, more exhausted, losing hope. I am told this is due to the location of my stroke, in the thalmus and basal ganglia which controls movement and sensation. Would love to hear any inspirational anecdotes about stiffness relief, progress past one year, etc. Sorry for the constant posts about the same thing but I am overwhelmed and stuck.
Does physio actually do any massage for the stiffness to relieve it any? Or have you ever considered trying an Osteopath to work on you for relief?
Idohope you carry on recovery can and does take a long time with kind regards des
It might depend on exactly how you’re affected but some people try botox.
Recovery can & does continue for many years. Keep going & hopefully you’ll see some improvement. Often they are quite small improvements & yoi don’t notice until you look back & realise how far you’ve come.
Sending love xx
I also have stroke damage in the basal ganglia. My movement is compromised to the point that without my walking aids I walk around looking like I am drunk. And yes, I do get exhausted and fatigued.
I am learning that I have to plan my days and allow for plenty of rest time. Each morning I get up and do what I can. Example, if it takes me all day to clean my bathroom - I say to myself ‘well done’ and pat myself on the back - I have achieved something.
Give yourself a pat on the back for the things you can do and rest when you need to.
I have done tons of stretching and massage which leaves me feeling stumped because there was zero reduction. Thank you for the suggestion
Thank you everyone for your responses and good wishes. It really means a lot.
Please forgive me for being naive - I’m not enduring your challenges so cannot appreciate what you’re battling with.
It is of course our desire to want to be the person we were before our strokes/TIAs occurred. Some of us have simpler challenges than others, myself included. But with time and rest being fundamental parts to our recovery (not all), it does pay to ‘park’ the things we used to do, wish to but cannot manage just yet or our ailments.
It’s already been mentioned, but reward yourself for the positives. The negatives will have to wait a while as you progress. For me, I’m more active, healthier and have lost weight. I’ll take those!
Wishing you well.
Yes. Agreed. Stroke equals teleported to a new reality
It’s understandable to be overwhelmed. dealing with acceptance and a firm mental base for physical effort maybe the higher priority than walking etc?
The rate of my visible recovery of motor functions (stamina, strength, reach, speed etc) has increased with time ie accelerated from glacial to now snail. I had next to nothing after the initial ‘flush’ in year 1.
As I get more able so I can do more improvement exercises. Its taken 2yrs too get to the point where I have real prospect of a useful right hand.
The 1st months (6?) are the brain physically healing and so capability that wasn’t destroyed re-emerges (1st flush?). After that is the building of new capability. I compare my self to my kids from birth to 1,3,5 etc. I’ve more understanding of the process (a plus) but older grey matter (I guess a minus) and im gaining capability about on an analogous time frame. I know if I was 16hrs day x 7 day I’d improve faster but I can’t apply myself that single mindedly but I’m very focused concious of and make use of day2day to improve on using my arm, walking with less issues diring the conduct of having an everyday life. That why I say that a positive mental state is maybe the priority while it’s maybe a detractor
I guess it doesn’t make sense in my head that stiffness and gait breakdown would be getting worse instead of better. Coming up on one year certainly doesn’t help nor does the fact that my fatigue also prevents me from working more than a few hours which puts a monster fear in me. I am still waiting on disability while working what little bit I can to the point of either crying afterwards in pain or being so fatigued I have to come home and do nothing for hours. I know this all sounds like poor me, pity party so I will say that hopefully I will eventually gain some stamina and/or better pain relief. In the meantime I will listen to the support I receive on here. I am so grateful for that.
Definitely not a pity party. We’re all here to listen & support where we can.
Just before my 1 year “anniversary” i ended up back in A&E as I felt just like I did when I had my stroke. There is a thing called decompensation that can occur. I’ve copied in a para that I saw elsewhere in case it helps. It may not be this you’re suffering but it might help a bit.
“Sometimes, if you are tired, unwell or under stress, the new connections in the healing brain can struggle to keep up. This can lead to problems reappearing or getting a bit worse. For example, at the end of a long day, someone might drag their leg more than usual, or slur their speech. This is known as decompensation.”
I would try movement in water, water therapy perhaps, allow that executive function to play and experiment freely with movement as opposed to rigidly, controlled physical exercise. As for the thalmus, concentrate on incorporating scent into all your sensory experiences. So, if you touch a flower, smell your fingers. Just thoughts on the matter.
It all sounds like a crushing weigh to carry. No wonder your overwhelmed.
Maybe (& ymmv) said another way it becomes a journey to better?
“I’m working a bit which gives my purpose & practice moving & money, Ive a strategy of coming home and resting, I want to reduce the rest time. Still adjusting for the ideal balance and to extend the hours of work vs rest. When I get it wrong my pain meds aren’t right so I need to respect that boundary…”
You’ll maybe be able to get it more inline with your thinking. Then try changing things 1 at a time for a week?/month ? A diary may help to see cause and effect
I haven’t found Progress to be uniform either. I got so much shoulder pain at one point it was crippling. I get muscle contraction pain in my neck and back whenever I push my arm & hand to work more. I have to rest for a few days which would be (more) frustrating of I didn’t treat it as a predictable post of the longer journey. I don’t know if slightly less effort for longer would be better for example
Maybe some professional help? Is your gp understanding & first line of help?
I have done months of aquatic therapy, and yes I do have mental support. Water therapy feels nice while I am doing it but I didn’t receive any reduction in pain,hence the reason they stopped that program after three months. I still do aquatics at the YMCA just for something to do but all of this is so difficult. I know I’m not the only one in stiffness and pain suffering us fatigue
I’m so stiff in the mornings I have to do stretches but I also use ibuprofen gel and massage it in to my bad leg and arm. Thinking of taking out shares in it I use so much but it does help for a while! Do try it and see if it helps
Welcome to our merry band
I use voltarol & diclofenic too BUT I don’t know if you’re aware the use of nsai isn’t “recommended” for stroke warriors
If your a heavy user and haven’t talked to your med team it might be something to have on the agenda next time