Hi, I just found this group yesterday. I haven’t been successful finding support groups in my area, so this community was a nice surprise.
I am a 46yo single mom in Iowa, USA. I was, until my stroke, a professional horse rider and spent my free time hiking and practicing taekwondo. I had a massive hemorrhagic stroke in March that should have killed me. It centered in my basal ganglia, so my cognition and memory were not effected, but my motor skills in my left side were badly damaged. 4 months later, the walking is coming along with the help of a cane, but my arm has very little movement and my hand is completely paralyzed.
I am struggling with adjusting to getting back to teaching little bits at a time, because it’s harder to teach for an hour than I think it should be. I may never be able to train dressage horses again, which his been my entire life focus, and I struggle to try to find my new purpose.
I am looking forward to learning from this wonderful group.
You are very welcome, although sorry you had to join us. There are several other Americans here - we are an inclusive group. Post-stroke fatigue is an almost universal symptom. It is very common to be unable to concentrate for long periods. No-one can say how things should be, every stroke is different and everyone recovers at a different rate. You are only 3 months post stroke and your brain will still be adjusting - if you broke your leg you wouldn’t expect to run a marathon 3 months later.
Again Welcome
Janet
After my stroke (a whopping 26/42 on the stroke severity scale) I took up Qigong because of its healing qualities, and have not been disappointed. I am a professional violinist, but now I can teach, if not play. Indeed, we must find our new purpose in life (which is to heal). In my case, I always thought I would paint in my retirement (a backup plan!). I guess phase 3 came a little earlier than expected.
Hi @Heatheriniowa and welcome So you had to join us but now you are here you will soon find you are not alone. As recovery is slow, you can take your time finding your new purpose. So never give up hope, you are only 3mths and the first year is the hardest. Much like a waltz, slow slow, quick quick, slow, as your is working overtime to heal and repair/reroute the damage done. And of course, the greater the repair, the longer it takes, hence years rather than months.
The fatigue can easier as that will partly be due to the healing process you are going through. It can certainly be made easier by pacing yourself and taking small frequent breaks, 5mins here, 10mins there just to close your eyes and rest your mind by blocking out the visual stimulation for a bit.
This forum is full of useful information and experiences from fellow stroke survivors. Look forward to seeing you around the forum
@Heatheriniowa hi & welcome to this community. Sorry you’ve had cause to join us but hope you find it a useful place to be.
In stroke recovery terms you are in the early days yet and there is plenty of time for loads more recovery. Take your time with adjusting back to uour teaching. Take it a stage at a time & build up gradually. Fatigue could be an issue if you try to do too much in one go. Lots of rest breaks in-between activities. Don’t rule out getting back to training dressage horses yet. It may be possible in time but if not you’ll find your new purpose when you are ready.
I used to practice QiJong since years ago. I am not capable of enough movement to do it now. I do wonder if I could find someone to help me modify the practice.
Thank you, it is hard to have perspective when I feel so much pressure to do what I can. Then it’s hard to figure out what I can do and how to define that. My speech therapist had me keep a log of what I did during the day to add our remove energy, what my symptoms are and what was required to feel better. That was an eye opener.
Pretty much everything you want to get answers on has been discussed here and can be found with the magnifying glass above. Often asking the regulars to sign post stuff is a good start too.
This is also a good place to have the odd cathartic rant, to share your victories to mark milestones and inch pebbles on the journey or to just share some pictures thoughts or musings
You mentioned “pressure” - what is the nature and the source of that? It will be adding to your fatigue!
How can you dispel it so that the energy and nutrition that you have no discretion over it’s allocation to healing and recovery can be left to do the best it can
Heather, I think Qigong is ideal for you to return to, even though you lack total mobility and range of motion (for the moment). You can do it sitting, or without the full range of movement. You just do what you can, and it helps you to gain awareness by looking inward and using your imagination, combined with the movements you can do. Normally you use 2/3 of your energy and keep 1.3 in reserve, not to tire yourself out. If you have injuries that should be 1/3 of your strength used for the exercise and 2/3 kept in reserve. It’s totally under your control.
With or without Qigong, I wish you a steady recovery, ciao, Roland
Hello Heather, I’m reaching the first anniversary of my TIA’s. Like you, though older, my pre stroke existence was extremely active and I have been lucky enough to have recovered physically well during the last 11 months. However, energy allocation is a huge struggle and I find that i need a significant amount of self discipline on an almost daily basis not to do too much too quickly. Some of my old golf friends at first found it hard to understand that to even play a few holes requires an electric buggy and it’s easy to feel the pressure of doing stuff that pleases others but leaves you feeling awful for a couple of days. What I found particularly hard was taking a golf lesson to try and compensate for my weakened left leg muscles. The combination of listening to instructions and then concentrating to translate them into actions is exhausting. For what it’s worth, I have found meditation has helped me immensely in my search for these inner disciplines necessary to regulate my energy output. I wish the very best for the journey that lies ahead.
Thank you for enquiring, Simon. My GP actually took me off statins and I now have 6 monthly injections, not quite sure what of, but it seems to do the trick in terms of the lessening of the overwhelming fatigue; the dizziness is still there though slowly receding plus I’m learning to cope with it. Thus all has been very positive, excluding the inevitable occasional sticky days. How about you?
Your story is helpful, thank you. I think energy regulation is probably something I need to put a new perspective on. I think the ideas about Qigong and meditation are showing up here for a reason.
Hello Heather, I’m John I had a bleed on my brain, affecting my left side, and I was left handed before, my stroke was a while back in July 2017. I can walk slowly with my walking pole. My left hand doesn’t work very well, but I’ve learned to adapt, and can now drive again, with my adaptions, your not alone, take care John
Well, so far so good re the inclisiran injection. Apparently, the only negative reaction can be a small rash at the point of entry that I haven’t developed. It has been a welcome change for me as I found the statin load and the side effects induced quite intolerable. I am a lot happier and feel that the route to improvement has had a substantial impediment removed.
I can relate to the frustration that you must feel as your mind races ahead of your ability to create the words that your brain puts forward. It may be similar to my current inability to summon the energy to comply with all the tasks that my brain suggests, incorrectly, that I might like to undertake. My only encouragement in this sphere is the mantra of incremental improvements, though sometimes one searches in vain for them. The very best of luck and no doubt you will continue peresevering.
Hi there and welcome although we all wish you hadn’t had your stroke. I am 18 months post stroke and still have to work on things. It is a very slow journey with many ups and downs but set yourself small achievable goals and celebrate when you have reached them . It’s also a very tiring journey so listen to your body! Keep doing all the exercises you have been given and keep a diary ., you’ll be surprised how many more things you can do in a few months time than you could in the beginning. Friends took videos of me walking at the start then later on and I could see the difference. It does help especially when the journey is so slow. Ask people on this site for advice any time . They are so helpful and you feel you are no longer alone. Take care and good luck regards Suzywong x
So you had to join us but now you are here you will soon find you are not alone. As recovery is slow, you can take your time finding your new purpose. So never give up hope, you are only 3mths and the first year is the hardest. Much like a waltz, slow slow, quick quick, slow, as your is working overtime to heal and repair/reroute the damage done. And of course, the greater the repair, the longer it takes, hence years rather than months.
