6 years and counting

My 6 year anniversary came and went a couple of weeks ago. Was a bit low for a while as I really thought I would be much further on by now. As it is I still have nothing in my left hand.left leg is weak and often stiff so walking isn’t getting much better.

Ok sorry for piling on the negatives. I just wanted to share some of the daily struggle which anniversaries often bring to mind.
Various achievements have often been marred by setbacks:
I got back to work after about 18 months but was still very damaged. It didn’t work out, and I lost my job under very unpleasant circumstances just 3 years after the stroke.
I don’t miss it or my employer. They didn’t like or want me and I’m glad to be away from them.

I got approved for driving after the second year, and had a few successful trips out, and got to use my car which had been sitting idle on the street for all that time. Unfortunately I had what I thought was a minor scrape with a roadside fence when taking a left turn too tightly, but the insurance company refused to repair it and insisted that it should be written off.

I was devastated but got a decent payment for it. I have no desire now to return to driving. The whole business of acquiring and looking after a car is just too overwhelming to consider. I could get one through motability but I am not going to.

Walking was improving steadily but lock down isolation led to a serious loss of strength. I was not opposed to lock downs, in fact very much in favour as I was quite scared of infection.

While I lost a lot of physical function and am now significantly disabled, I was fortunate to have not been much affected cognitively. I can read to my hearts content and can enjoy a movie. Struggled a bit with both in the first year but I am flying now, and read pretty much a book a week. Can get through a good one in a day if it grabs me.

I have had amazing support from health professionals. My occupational and physical therapists have been outstanding. I no longer have sessions with them, but they left me with plenty to get on with.
The losses were more than just physical. I lost my role as a provider for my family and lots of other little things too numerous to mention. There is also the loss of a future. Sounds odd perhaps, but becoming disabled meant there were things i used to imagine myself doing or being which are not now possible

I read a lot about neuroplasticity and I still have hope that something will change, but I don’t expect a return to anything like pre stroke, it is increasingly hard to remember what that was anyway.

So the big deal now is acceptance, and in this respect I am taking the big step of getting a powered wheelchair. Recovering walking to a sufficient degree to get about properly is too remote, so I need another solution. I have a manual wheelchair which I use a lot, but while my family have been wonderful my grown up children are on the cusp of moving on, as they should and my wife is recovering from a broken shoulder so I have to find other answers.
I still get fatigue, not nearly as much as I used to. The stress of the demise of the job was the biggest trigger for that. Thankfully that’s all gone now.

So that’s a bit of my life. Not a heroic recovery story, but I’m still here though. I am hoping my new mobility appliance when it comes will help to expand the horizons of my world. Looking forward to it.
Year 7 is just beginning
If you’ve got this far, thanks for reading.
Best wishes to you all
TONY

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Hi Tony, a very interesting and honest assessment which I found encouraging and depressing in equal measures.

Disappointing that you lost your job and future aspirations (but totally relatable for many of us). Also sorry to hear your struggles with your walking and hand, particularly as my left (dominant) hand still has almost no feeling after 10 months. I still try to do things with it but don’t hold out much hope of improvement.

Good to hear that you are trying to move on and accept this new life. Great that you can still enjoy books and movies (I love reading and find a kindle helps with the hand problem).

It is such a horrible thing to deal with, especially the less obvious parts that “normal” people won’t see. However you survived and still seem to have some quality of life that gives pleasure so take that as a positive

Remember that all of us on here will fully sympathise and relate to much of your situation and are more than happy to have a chat on here.

I wish you all the best with your continued journey.
Mark

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@Anthony.Nickson thank you for sharing your story. It’s always interesting to read how others have been affected & how their recovery has gone. It seems like you’ve had a few difficult experiences along the way but good to hear you are finding ways to move forward. I’m sure your new mobility appliance will open up the new horizons we all strive for.
Best wishes

Ann

Hello Tony a very detailed and informative, interesting read about your journey! Appreciate you sharing. You have over come lots of hurdles and c@$p life has thrown at you and I salute you for it. On wards and upwards 7th year with your mobility chair. Think of it as a super power chair! I wish you lots of success and more importantly improvement.

I’m glad you aren’t at the job you felt unliked at, it’s their loss plonkers! It can cause excess stress trying to please some people.

With your lovely families support you have conquered so much. I hope your wife’s shoulder improves swiftly and your children ready to fly the nest gives you another lease of life and a new chapter. I still cannot read a book yet! But hoping to soon, any recommendations on a easy read which the writing is not small :joy_cat::joy_cat:I still use books not a kindle person. Best wishes Loraine :blush:

Tony,
Brilliant and moving read to be honest. I am sorry for your circumstances (my elder brother is in the same boat, aged 67, hence I am here). I am impressed with your resilience and pragmatism. I am learning what to expect in the coming years.
I don’t thik there is a chance my brother will be walking, or driving, so an electric chair is almost a certainty - I was surprised you didn’t get one yet.
Yes, having your congitive abilities (mostly) intact is a blessing. My brother cannot realistically read (vision issues), but otherwise has all his memories and can communicate well.
It is these silver linings you have to be grateful for when you are in that ‘acceptance’ of fate stage. Life is different. As it is different for many many people out there. You had the benefit of a different lifestyle before, and while hard to lose that, you are still you.
All the best and keep battling.

Thanks for the encouraging reply
I’ve been far better off mentally and emotionally since I finished work. Terrible experience. Took best part of 2 years for the flashbacks to wear off. I was successful in claiming Esa and was put in the support group, also had a good result from Pip, after some Argy bargy. I got a decent settlement from my employer, so all in all while I was propelled into retirement rather earlier than I’d expected, this support along with the wonderful support from my wife and family means were managing fine in spite of the various horrid things we’ve had to cope with and generally speaking I’m in good shape and while I get the occasional dip, I have a fair bit of peace having come to terms with a lot over the last few years
Best wishes
TONY

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Thanks for your understanding
I’ve definitely had a lot to come to terms with but have found a good deal of peace after a fairly turbulent few years. Looking forward to a gentler year this year. That’s my hope.
With very best wishes
TONY

Glad @Anthony.Nickson you should be very proud. I’m in the process of trying to claim PIP and ESA I have a phone call tomorrow from then. Mine is not just stroke related though I have other recent diagnosis. So hoping to at least get a cushion instead of relying on my husband to keep and support me. Have a nice weekend :blush: loraine

Good to hear your brother has not lost his communication ability. He’ll have much to come to terms with, but I hope he can find some peace with what has happened to him. The love and support of family played a huge part in coping with all the stuff I had thrown at me in recent years and continues to play a big role in keeping me sane. I know how much it takes out of a carer, but your support and love is essential, and the best medicine. I’m heartened to hear about your brother.
Thanks for reading my post and responding.
With all best wishes
TONY

Good luck tomorrow with the benefits claims.
I was always advised to talk about how things are on the worst days. It is a bit depressing but the claims are tick box exercises as I’m sure you know, and don’t allow for nuance.
Anyway I hope you get the result you need.I’d heard all kinds of horror stories about DWP and was very nervous waiting for the result, but immensely relived when it came through positively. So I do hope you can get a positive result.
Best wishes
TONY

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Hi Tony. I’m now entering year 7 of recovery to and our experiences are very similar. I had hoped for more improvement, but can walk with a stick. I’m nearly 79 so unlikely to be anywhere close to where ai used to be. I classify myself as partly disabled and can’t drive so rely on my partner a lot. Had a second minor stroke two years ago and that set my walking back a bit.

On the plus side I can still cook and bake and do small household tasks. Have had to make adjustments to our house, which helped, but although once an avid reader, I now find reading difficult. Onwards and upwards though.

@Anthony.Nickson hi Tony, I think you are heroic, your strength of character and determination shows.

Best wishes, take care

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Thanks for the kind words
T

It’s great you can cook and bake.
I will be experimenting this year with things to see what I can manage one handed. Well have to make a few adaptations. We invested a while ago in a smart new induction hob cooker, less risk of burning myself I’ve used it a few times and will be working out what I can do over the coming months.
I’ve very much enjoyed your posts over the years and you’ve helped me keep a good perspective on things. I’m a good few years your junior, and stroke happened while I was still working, at the age of 57, sounds like you’re doing great at 79. I’m happy now to be retired, albeit not quite in the way I’d planned!

Today I purchased a powered wheelchair I’ve been investigating this for a while and tested one today which works for me, so I’m hoping this will expand my world a bit more. Initially I don’t expect to go out alone, not until I am properly confident with it, but it will make it easier to go out with family and friends. So I’m very much looking forward to this. I have a mobility shop local to me, run by a lovely couple who couldn’t have been more helpful. I am reassured that if I need help it is just down the road.
Anniversaries are funny things, and I just felt like posting a reflection as I had been a bit up and down with memories of the last few years.
Had some lovely replies.
Feeling very hopeful today.
Very best wishes
TONY

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Tony. My cooking is:mostly one handed. Frustrating at times but I cope. It’s surprising what I can turn out. I did invest in a food processor and electric hand whisk.

There are many aids to cooking one-handed. I would suggest a good pair of scissors - for cutting up meat and chopping herbs (put the herbs in s mug). I also have:
a combination spike and buttering board - use for buttering bread and the spikes hold veg in place for peeling and chopping.
a belliclamp for opening cans, jars and bottles.
one-handed can opener, pepper mill.
A kitchen table is useful for food prep if standing for long periods is difficult/painful.
I hope you enjoy your new powerchair, mine was a life changer since my manual chair was doing nasty things to my good shoulder and arm. I would consider getting a car as that will give you more use of your chair if you can transport it. Alternatively find a good taxi service unless you live within easy access of everywhere you want to go. The biggest hazard I find when out is people walking looking at their phones, not where they are going. They veer in front of you, then blame me for the collision.
Janet

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Ah. The Electric Wheelchair option. My brother is borrowing one to try. Its a bit small and his reaction time is, I think, making it hard to see it as a possible tool for some independence just yet. We’d be happy to buy or rent a more suitable one if there is one, but at them moment I think he continues to needs a chaperone with it. We thought it was essential (just 5 months into recovery) to gain some way to move about, rather than being restricted to bed or armchair for most of the day, with bits of OT still happening.

With the severe mobility issues, we will need to rely on wheelchair accessible taxis to get to appointments. Have you used?

Hope the wheelchair try out works out
Taxis I do use, yes.
In London where I live London councils run a taxicard system( just called Taxicard if you want to look it up) for disabled people, you automatically qualify if you get the enhanced mobility component of the PIP. It provides a bit booking service for mainly black cabs at a very reduced rate, so a short local journey can be done for £3. Sometimes have to wait for a fair while before a cab is allocated. Not great for appointments where timing is critical but brilliant for most things. In the early days I was able to use cabs independently and even got back to work, the Access to work scheme paid taxi fares for me. I wasn’t mobile enough to use public transport unaccompanied.I won’t go anywhere now unaccompanied especially while I’m getting used to the new wheelchair. Thankfully I no longer have to work, so that is a stress I don’t have to deal with any more. 5 months is very early days. I hope the OT support works out. I had some brilliant OT and physiotherapy support in the first 2 years. I make it up as I go along now, at 6 years plus I don’t put myself under any pressure

Thanks for sharing, it gives us all an insight to the lengths of recovery and your challenges.

I was talking to a fellow SS on Monday at my local STROKE Association meeting, he was 8 years into recovery and looking pretty phenomenal, still had fatigue issues but some of hi s memories had returned so his message to me was keep on going doing everything as normal and consistent exercises and the very clever brain will deal with the rest, arm came back to.