Gentle exercise in the early days but with determination!

I make sure I mobilise regularly around my home and especially take time to do several knee-dips or small squats to strengthen my legs.  I also do leg lifts with my stroke leg (right) as often as possible.  This has all helped me become much stronger over the last 6 months, nearly 12 months into my stroke; they said I would never walk again if I didn't do it within 6 months and I started walking in month 6 - just a couple of small steps, then a few more and then more until I can now walk about 25m, get in and out of taxis/cars, sit and stand, make a coffee and wash up in the kitchen and also walk up and down a few steps, all independently.  I'm still a bit slow, but I'm getting stronger and quicker every week. 

I'm having similar problems. When I returned home after my stroke I could walk round a 300 yard block. But now I can hardly walk. I seem to have lost all motivation. Any advice or suggestions would be very welcome.

Peter

Peter, I was going to post this separately, but you might find these reflections helpful:

I was thinking this morning about how far I have come since my first terrible stroke five years ago. I know Colin advises people to keep a diary of their journey and perhaps I should have done because it is too easy to forget those first days of damage to the body. I think what I learnt most was to try to do things as the first step leading to another. For example, to just stand outside the front door or to do buttons or shoelaces up. When I put the bin out yesterday, I remembered how pitiful my first attempts were and how it took ages to open a bin bag to replace a full one. I can manage things so much better these days.

That is not to say I am fit and well. I am still partly disabled, walk with a stick and can’t go anywhere under my own steam. I can’t do the top button up on a shirt, carry a dinner tray or cut meat, but I can do many, many things that were impossible five years ago. I utilise my weak arm and hand as much as I can, although I doubt they will ever be 100% again. Most of all, I refuse to give in. It helps to have a trolley I can wheel things on, scissors to cut open packaging and adaptation we made to our kitchen so that I can get things out of cupboards easily. I also have a grab stick rather than risk stooping too much and falling over.

I think I’m trying to say that it is no good operating from a basis of wishful thinking, but to just keep trying. Progress is so slow, but it comes. After five years I feel more like ‘me’ or, as Colin would put it, the new me. My quality of life is not bad, although it will never be what it was. Keep trying folks!

Peter, you walked 300 yards. You can do that again. If you walk six days a week, you could start with however little you can do then do a fraction more each day.

what might be happening...

your muscles arent being used, you need to move all the muscles every day. Your brain isnt bothering to send messages to the legs etc, just remedy that by concentrating your thoughts on moving.

dont fall in to depression. Smile endlessly. Get your sleep right.

you have survived a stroke, thats fantastic. Make use of your fantastic survival. 
 

i see the very wise John has also written to you. He has so much courage, try reading some of his posts. He has so much to share, so inspirational.

 

you are not alone

colin

Many thanks for your very helpful responses.

You have certainly shown persistence! I was lucky with my stroke in 2017 that I just had mild gait ataxia. I wanted to reply to you as I have signed up to stroke voices in research and will certainly remember your story. It also inspires me not to hold my husband's hand so much on our walks. Keep up the good work! Hilary

Dear Eddie

I think I have written to the wrong person. I wanted to say how inspired I was with your story and hope to remember it when I am working for stroke voices in rearch voluntarily.

Best wishes

Hilary

Sorry to hear this Peter. It is hard to get physio support and they just seem to check your over rather than doing any actual physio exercises with you. I was just given laminated sheets with exercises on and left to it and that's not motivating either. 
 

maybe we could do some exercises together on WhatsApp video?

Thank you. Never give up!

That's very inspiring Eddie 

Hi Peter

 

sorry to hear that and hope things improve 

its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio. 

I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing. 
 

im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️

Hi Peter

 

sorry to hear that and hope things improve 

its hard to get any support as the NHS is stretched to the limit and physio treatment is just not available unless you pay privately which is £90 per hour as it's specialist neurophysio. 

I've had about 15 hospital admissions after falling several times and it turns out the falls are from blacking out after having seizures which is apparently a risk with a stroke but I was not advised about this so quite distressing. 
 

im much weaker and very depressed. I've been offered steps to well-being but I'm non-verbal so only online webinar/powerpoint slides with a group is available. Not the same as 1:1 counselling ☹️

Fantastic Eddie, your self determination and motivational strength has paid off, every step is a victory and testament to your courage and belief in yourself.


Very inspirational.  Wishing you all the best.

Thats just refreshing to hear eddie good for you , youve pushed on doors and theyve opened for you , through determination and self belief , love it ?