Introduction to my life

Hi my name is Ann and my husband had a huge stroke in April 2017, he has been affected on his right side and is totally unable to use his right arm/hand he can stand with assistance using a tripod but has great difficulty with walking due to dropped foot and can only walk a few steps with assistance. He also has apasia and has problems with his speech, reading and writing, when this happened we both had busy working lives he was 57 i 60 he is now unable to work and i took retirement to be his full time carer obviously the change to both our lives has been immence how do other people cope, do you go to groups and if so do you find they help? Thanks

 

Hi Ann. You are in a difficult situation, as Both your lives must be difficult. Stroke left me with drop foot, but I was lucky because my health authority funds FES machines. These assist walking by sending an electric shot through the leg muscle and this lifts and places the foot in the correct position for walking. Not all health authorities fund these unfortunately.However, I did have an allergic reaction to the skin pads. Fortunately, after three years post stroke, my drop foot cured itself, for which I am grateful.

I am fortunate to also live near a Life After Stroke Centre run by the Stroke Association. They run all sorts of activities for stroke survivors and their carers. Most areas have, at the least, Stroke support groups and support groups for carers. It might be useful phoning the Stroke Association helpline to see what is available in your area. It does help to be with others who know and understand your situation.

Dear Ann

Please say hello to your husband from me. Lots of us are out here willing him on.

I concentrate on what I can do rather than what I can not do.

Recovery will go on as long as hubby puts in the effort. Stroke bit me in December 2015 and I am still getting recovery. My damage was not as severe as many but it has changed my life completely. I try hard to work on the "new Colin" as the "old Colin" has well and truly gone. I get huge miseries if I try to think in terms of what would have been but for stroke...

From day one, literally from day one, I have insisted that my wife has time away from me. She needs consideration as you need it. She really should have joined our local stroke group who dedicate one day to carers rather than stroke survivors. They even have days out. I started by insisting she went out for a couple of hours. She loves shopping and coffee mornings etc and I urged her to go. She still does. And then I got her to travel and stay away for a few nights each month. Usually this is staying with our son but sometimes she will stay with friends. I benefit a lot from her absence. It gives me time to think. It gives the chance to look after myself at my pace and not the pace of a fully fit person. Independence days.

Do go to your local stroke group. And to anything else that might be available in your area. 

I attend a group relax session. Thats such a boost. Only this week I started a gentle yoga for beginners. Never knew a thing about yoga but its really smashing. So much to learn.

I appreciate that I am alive. So many do not make it. There must be a purpose to my survival. So I serve at tables and I also make tea and coffee at some weekly meetings. It was hard at first but became easier. Thus I am doing something. I also do a tiny voluntary task which does cause me great fatigue. But I was asked, was wanted and now I do the job others can not do. Its only four hours a month.

Instead of gym type exercise i do our very long garden. And I walk distances in the garden rather than endless plods along the pavements. My ability to travel is very low, so I accept everything is local. Very local.

I am an FCA and so its odd not doing high powered voluntary stuff. I have two houses to maintain so one is simply landed on to my son. My long garden is nowhere near perfect, but I grow fruit and veg and I slowly keep it tidy. Well just a bit tidy.

You will find people that you like to be with, give it time.

Best wishes

Colin

 

Thank you so much Colin we will keep pushing on i get out when i can its not a lot but Tony does need a lot of care we carry on trying to improve his situation at times he too tells me to go out i think like you said he appreciates some time to himself. I will look into a local stroke group.

Thanks for your input

Best wishes Ann

Hi John thankyou for your reply, can i ask what FES stands for i will look into it i am also going to look for a support group

Thanks again

Best wishes Ann

Functional Electronic Stimulus

Thats good to hear

Colin

Hi Ann

All that Colin and John say is so true, and hope it helps?  I want to give you hope (though I truly hope it's not FALSE hope!).  Know it doesn't work for everyone, sadly, plus I was v v lucky, but I worked like a Trojan in physio.  Had it twice a day for a whole year, when I was in hospital.  Amazingly, I overcame total paralysis, as well as a few other issues, physical and emotional.  You sound a fantastic support, and I really wish you both well.  Carole :)

My brother has a foot support/brace in plastic for the dropped foot problem ... you can get them everywhere.  It helps him to walk correctly and he can now do 600 meters with it and a stick.  He has never had a tripod as he is Badly affected on his right side (can’t use his hand at all) and we were told a tripod would be wonky and dangerous.  His physio always has insisted on using the walking stick and this works well enough for him.

walking any distance will come with time - we count the steps or meters every time my brother walks - at first it was 10 steps,now he does about 1000 some days . Keep up the good work and be positive about any progress as every little step forward is a step to victory!