4 years on and counting

Life after stroke
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Last Thursday marked my 4 year “Stroke -a-versary”! Last year i marked myself as being as recoveed as possible, the is year everything is stable and dare I say it, 90% back to pre-stroke me. The remaining 10% is unseen, fatigue once a month-ish, tinnitus, occasional word mix ups etc. a huge amount to be thankful for, lots of understanding especially this forum.

I am fortunate that I am able to do this thing i love, one of which is leading walking holidays for HF Holidays. On 15th may at 12:15 (Stroke -a-versary time) this year I was up on Malham Moor behind Malham Cove, leading a group on a 12mile walk. I managed to find a moment to stop and take a photo, my group in the background, and i dedicate this to all of those out the who are directly and indirectly affected by Strokes.

Takes a few days to recover from these leading holidays now but i can live with that, just takes a bit more management of time.

As my friend @Bobbi says… “Keep On Keepin On!”

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:four: :four: :four:

Well done you. What excellent news.

Happy Stroke Anniversary Phil.

keep on keepin’ on

:compass:
:smile:
:footprints:

(Malham - a remarkable area :+1:)

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What an amazing way to spend your stroke-a-versary! I’m sure this will inspire others, thank you for sharing!

Wishing you well on your continued journey. :slight_smile:

Anna

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@EssexPhil wow that is amazing & it makes me happy to read how you have managed to get back to the things you love.

It must feel so good to be out there leading those walks and taking in all that fresh air.

A great way to spend your stroke anniversary.

Best wishes

Ann

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Hello Phil - Great read and thanks for sharing.
You say that last year you marked yourself as being as recovered as possible which if I understand right means you don’t feel you can achieve the remaining 10%. If that is so, what is it that makes you think that.

Looking at what you have achieved, the way you have achieved it and the time frame you have done it in, I would like to think if I was in your shoes the remaining 10% is something to aim for.

Are you possibly doing yourself a disservice by “plateauing” at 90%? Don’t get me wrong, what you have achieved is fantastic and I wish more people were able to do that, but I am always trying to see what it is that makes “full recovery” from stroke “impossible”.

I think certainly we are not helped when the professionals tell us that after some period of time further recovery is not going to be possible (say 6 months?). Then it is made worse when there is no support of the type needed to achieve a fuller recovery after 6 months.

Do we give in to these arbitrary barriers and timescales too easily?

It would be interesting to know from you how you achieved the 90%.
For example, what were told you would achieve and what timescale were you given?
How did you carry on - did you get more help or did you help yourself?
What was the severity of your post-stroke condition?

If you were to say to others, I achieved 90% recovery, you can do it too, and here is how I did it.
What would that look like?

Wishing you all the best and I strongly urge you to go for the 100% - it is totally doable :slight_smile:

Clue:
Elite athletes - how is it they set new highs?
What do they do when they plateau?
Why do they change coaches (usually when they plateau of fail to win that medal they so desire)?

Enz.

:pray:

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That’s a great inspirational post. Well done you :clap: :clap: Your recovery has been amazing and it’s great you are back doing the things you enjoy.

Thanks for sharing your achievements and Happy Stroke anniversary.

Regards Sue

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Anything is possible, something’s perhaps, less likely. My 10% estimation is things that may improve in the long term, not expecting they will but there’s always hope. I have tinnitus (not likely to go), fatigue which is much improved and may get a little better as i am about to go to 4 day working from 5. My understanding from much reading is that is the most common long term effect of the brain needing to work harder and in a different way to usual.

My cerebellar stroke gives me a bit less fine muscle control on the left and teducitou h sensation in left hand this could progress further as i still keep up basic physio exercises and just last night went to my first pilates class. I definitely notice some deterioration if i don’t do physio for a while. I guess as i get older and less active that may step backwards a bit but i will be trying to keep it at bay.

Speech when tired doesn’t changes, mixed up words or not being able to get the words out even though they’re in my head, may improve but reality is people don’t really notice that until I say about it! I actually find it quite amusing :smiling_face_with_sunglasses:

So, yes there’s always hope for improving but I think 100% for me will be just out of reach, I’ll keep on keepin on just in case :+1:

Thanks for the comments and replies, it’s nice to know none if us are alone out here in stroke land.

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Hello Phil,

It seems to be you may have recovered 100% and are now looking to go beyond :slight_smile:

The way I see it, and I don’t know how young you are, but the things in the 10% are not necessarily stroke related. May be I am wrong?

I know people who have tinnitus and they haven’t had a stroke and their tinnitus is also not likely to go.

With age (hence not knowing how young you are) certain things start to happen e.g. forgetfulness and physical health etc. As we get older, we also need to start thinking about how to manage these things e.g. changes to diet, become active or more active (do yoga, pilates etc) and do puzzles, crosswords etc. to keep mind active etc.

You are a well read man and you don’t need me to tell you these things :slight_smile:

Loneliness is a curse for the elderly and that too can be addressed - join local clups, take up new hobbies etc.

No one needs be lonely, not in this world.

There is always someone there for you :slight_smile:

Take care, good health.

:pray:

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We are very similar in our level of recovery, 90% is our new 100% normal and that last 10% a bonus if achieved :grinning_face_with_smiling_eyes: Did your tinnitus come from your stroke? I suppose I’m fortunate that my tinnitus has been with me most my life so its as natural to me as breathing. I don’t really notice it in the background until I think of or discuss it :slightly_smiling_face: Are you finding that at all yet?

@ManjiB Fatigue at this point in our recovery is from the brain having to work harder to function with these new signalling pathways it’s learnt in order to function. Particularly if signals are have to piggy-back off other neurons and pathways because the usual pathway is dead and can’t replaced. Therefore the fatigue is always going to be there. How much fatigue you have depends on the size of the stroke damage and how much has been repaired/remapped. Keeping it to a minimum is down to good thought and planning to best manage it but it can’t be completely avoided. So when the brain is fatigued any deficits will become more pronounced, such as my drop foot is seem perfectly normal during the day but by about 8-9 o’clock it will drop noticeably. Same with speech and volume of speech, hearing too. It all depends on how much/how hard I’ve used during the day.

And yes, it’s likewise for people in general in old age with natural brain deterioration.

Lorraine

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Hi Lorraine - thanks for reminding me. I keep forgetting I am not a stroke survivor and so not speaking from experience :slight_smile:

Having accepted what you say about the fatigue experienced by stroke survivors being different to that experienced by “non-stroke survivors”, maybe it is the naivety, foolishness, romanticism or just the desire to think that a stroke survivor is no different to others. I am thinking, “What if I forget I am a stroke survivor” and work towards goals to improve myself.

I am thinking if I was you or Phil, I would not like to think my condition is down to the stroke alone. Right now, I don’t want to accept the Brain recovery being the cause of fatigue. I want to challenge that belief and suggest it can be overcome in the same way the physical muscular fatigue can be overcome.

What if the brain being exercised and conditioned regularly allows the brain to strengthened and improved in the same way as the physical body is strengthened and improved through exercises.

I am thinking and challenging myself to make my brain stronger and better through mental exercises, physical exercises (they are connected), brain food (whatever that may be - more research is required for me) and as with the physical rest and recuperation.

Maybe that is what I am doing now albeit a non-stroke survivor. Yes, there have been times when my brain has hurt (I can’t say it was fatigue) but it doesn’t hurt as much or as often :slight_smile: My brain is maybe stronger and improved. Right now, I cannot explain, how or why that may be and whether it is down to something I am doing or have done.

I don’t want to accept my fatigue however it is caused cannot be reduced.

Just like the rest of stroke treatments that are in need of revising, I personally believe that this notion (or fact if you want to call it that) that brain fatigue due to brain rewiring cannot be avoided.

The brain and neuroplasticity is a subject to explore further. I believe this and stroke treatments are in their infancy and we have much to learn.

I for one refuse to accept the idea of brain fatigue cannot be reduced. The human body and mind are quite remarkable and there is so much we do not know about it yet.

Yes, I may be very foolish or very naïve or maybe a dreamer, but I am feeling very optimistic that we will not be defeated by this condition. If I am the only one who thinks like this, so be it. I stand by my beliefs :slight_smile:

:pray:

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Happy Stroke a versary. I had mine in September so am 8 months into my recovery and still a way to go but am heading in the right direction. Thanks for your story. Gives me hope of a little more improvement before my Stroke recovery window ends. I am back to work but not sure I am capable of doing my current role but there is definitely something out there for me.

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Your window of recovery never ends, so don’t panic :grinning_face_with_smiling_eyes: There’s always room for more improvement, so don’t let that myth hold you back :wink:

Lorraine

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Yeah I was told about 12 months but Im only 55 so not giving up. Onwards and upwards.

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I love this - and if I may, I should like to extrapolate and expand with the suggestions:

  • There is no plateau (compare the window never ends)
  • There is no limit to how far you can recover (this is the same in all walks of life - if you wish to continue as far as you can go, there is no limit).
  • As in other walks of life, you learn and improve all the time (“every day”)
  • We are all different, and as in all walks of life, some of us will reach our goals, some will not. Reasons why this happens are many and apply to individual and personal circumstances.

And so, if for example you aim to walk 100 yards and you achieve that, that is your goal achieved but it is not the end of your recovery, unless you want it to be.
Hitting the 100 yards goal is an opportunity to set another goal …

Wishing everyone who reads this all the best in achieving their next goal so that they can then set the follow-up goal.

Happy and strong recoveries to one and all.

For some reason, I am forever running into fans of Walt Disney, though I myself am a Warner Brothers (cartoons) fan, but there is a famous quote attributed to Walt and that is

  • Walt Disney’s Quote:

“If you can dream it, you can do it”. This quote encourages perseverance and action, reminding us that our dreams are attainable if we put in the effort.

Do you dare to dream?

Now who said that?

:pray:

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The window is always slightly open, improvements may be almost unnoticeable and over a very lonng timescale - onwards and upwards.

@ManjiB one thing i did was taken from my project management training at work based on a Kanban board .

Made a To - Do list of things, say 20 things but variable. Can be anything, make tea, walk up stairs, visit library, literally anything in helping recovery.

*Put 5 of those on a “In Progress” list that you can work on. Chip away at them at your own pace. When one is done, move it to a “Completed” list. *

As each is completed, move a new one from To-Do to In-Progress - Never have more than 5 in progress as it can be overwhelming. If something is more challenging, perhaps have less than 5 in progress, so you can focus a bit more.

As each was completed i celebrate with a cup of tea :smiling_face_with_sunglasses: each 10 moved to the Completed list an extra treat as a reward :innocent:

There were so many bits of therapy and general stuff to try and do i needed to stay focused, doing the above helped me, perhaps might help some others too.

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That’s pretty much how I do housework. Particularly since my stroke as to consider everything to be done is just overwhelming and I’d end up doing nothing. So now it’s a case of break down it all down into sections and each room is broken down into sections a room into sections as to what is needed to be done. And just concentrate one task or section at a time. Makes life easier for planning out your day and working around the daily routine tasks :grinning_face_with_smiling_eyes:

Lorraine

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Sounds good Phil. - I had heard of Kanban as well as other project management methodologies such as Scrum, PRINCE2 and others but never used one in anger.

Your approach sounds perfect for what you need to do - I might try and create a Kanban board for myself. I have done to-do lists but they simply don’t work for me. I must be the worlds best procrastinator. Any excuse to not do something or to move to tomorrow’s list and as we all know, tomorrow never comes :slight_smile:

I have to try to wean myself off this forum as I am now an addict spending far too much time on it.

I hope others might follow your lead and come up with a Kanban board or variant of the same as I am sure it will help them. It is the model of Japanese efficiency after all :slight_smile:

:pray:

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Hi Phil I’m Peter in Billericay , I had a carotid block causing my stroke after stent put in started rehabilitation. Started walking again not bad now some numbness in my affected foot. Regained my driving licence , try to something every day keep fit regime. I note what you say about follow up not enough about the mental changes we go through , like you I consider myself 90percent recovered unfortunately one of my hobbies golf doesn’t lend itself to balance problems although it’s not through lack or trying. I liked decorating but restricted by unable to use ladders, can you believe I was a Fireman for 27 years.We have booked for a summer holiday abroad I’m a bit anxious although the insurance was expensive ! I’m still looking for the missing ten percent!

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