Taking Stock

Life after stroke
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Well, it’s nearly six years since the big stroke and a year and a half since a second minor stroke and I’ve come a long way, although it’s never far enough. When I came home, I could barely walk, had drop foot, a jerk in my weak arm and minor hallucinations. My left hand was just about usable, but couldn’t really hold anything. I had lost a stone in hospital and had terrible fatigue. After a lot of repetitive exercising and using my left hand whenever I could, I can hold light things in my weak hand, put up an ironing board, cook, bake and make marmalade and chutney.

That said I am still clumsy and my left hand lacks sensitivity, but is more sensitive to pain. Oddly, I can still cut the nails on my right hand holding scissors in my left hand. I have to do this very carefully and can Nick myself, but I can do it. I can’t hold a fork in my left hand though and have to eat American style with a fork in the right hand. I can walk, but not very far and cannot catch a bus, so I have to be driven everywhere. I wouldn’t risk going abroad again because of the effort involved but can go on door to door coach breaks. So it’s not all bad.

Fatigue still gets me every day at noon, and I dare not do too many tasks in a day. When I walk, I have to focus on gait and not become distract. I have a stick, but still have totters and wobbles. I accept that stroke has changed my life, but it has not defeated me. People’s reaction to my stroke have varied. Some people have never acknowledged it, some pretend my disability doesn’t exist and others say ai am wonderful. I thank people if they offer to help me, but usually refuse assistance. We have made alterations to the house to make it easier to manage. For example, a seat in the shower, comfort height toilets and an ergonomic ironing board.

More importantly, I keep on trying to improve but age is against me. But nothing will stop me trying.

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Inspirational!
Thank you

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Hi John Jeff
It is now a year since my TIA and the reason I haven’t been posting is that I have been hit by another health issue. I asked for answers as to why I wasn’t making any recovery from the endarterectomy, neurology told haematology to do more investigations and they discovered that two of my genes had decided to mutate and then command my bone marrow to over produce red cells. This overproduction was causing the clots. Also I don’t have any iron in my bone marrow. I have a rare blood cancer, iron restricted polycythemia vera rubra, to give it its full name. It cant be cured but with treatment I should be able to last out my Allotted span. I am taking chemo pills daily to prevent red cell overproduction as I am a clot high risk. I have no energy whatsoever , I don’t want to even think about things let alone do them. The chemo makes my muscles ache and cramp, gives me headaches, sweats, prickly skin, numb feet, but I am alive.
I can still enjoy my family, my garden, a good book and the odd game of petanque . Having a third jab set me back several weeks increasing all the chemo symptoms but it is now getting better. I am lucky to have been diagnosed and treated in these crazy covid times. I loathe telephone consultations with doctors I have never met, I hate all the blood tests and all the pills I swallow. Often the NHS drives me crazy but we are lucky to have it. My good wishes to all. Marylin

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Thank you for your moving response. Alas, when we set out in life we do not know what lies ahead. Someone once said to me it’s better that way, because if we knew we might not cope. As it is, we have to accept and deal with things as they come along. Thank God for the NHS, because when you really need it, it’s there for you.

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Hello @John_Jeff_Maynard, thanks for posting this. We must be on the same thought train as I have been drafting a one year stroke review of my symptoms which I will post soon. I think reflecting on improvements is wonderful, and helps other stroke survivors just coming out of the woods the opportunity to see the steps forward. You did the right thing by using your left hand whenever you could, in some therapies they put the good arm in a sling to prevent the brain from wanting to default to the good side. Good to hear that you are keeping your spirits up despite the challenges. Determination is key, but it’s not easy at times. There is a Welsh saying, "araf deg mae mynd ymhell’, which translates to, ‘go slowly, and go far’.

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Hi John Jeff
I THINK WE ARE NEAR contemporaries in terms of stroke. Like you I am approaching 6 years. Taking stock:
I was in hospital for 10 weeks after seeing my GP With a complaint about funny feelings in my left hand. She did the FAST procedure of tests and immediately called the ambulance for suspected stroke. So far so good but I was left for some hours after triage in A&e but was well cared for once I was taken into ward, with blood thinner drip, CT scans, the full works I didn’t really know what was going on, and I don’t remember now when I became aware of the extent of the damage. I d suffered an ischemic stroke. Which left me weak on the left side. There was a lot of physiotherapy and occupational therapy in hospital and they managed to get me on my feet after a few weeks intensive work,
I was wobbly and could not realy bend my left leg at all. They tried unsuccessfully to get my left arm and hand to work. After leaving hospital the OT Service arranged various adaptations in my home including a hospital bed for me on the ground floor, it was weeks more before I could manage stairs, but eventually I was able to make it up to my own bedroom much to my relief.
With the help of the community Neuro rehab team I was able in spite of significant disability to get back to work, this was more a case of having to than wanting to. I had a senior role in a local charity, but my employer was not very charitable. My return was difficult, and I could not function with the same energy and focus as prior to the stroke. It went from bad to worse and eventually they found a way to get me out, which worked OK for me, but left some significant emotional scarring, it was a horrible experience. Looking back I am amazed that I coped at all, and that I even got back to work.

My walking now is still laboured but I try to practise as much as I can. I had foot drop for a long time and used an FES machine to help compensate. I still have it on loan but rarely use it now as I am still determined to learn to walk better. I can’t give any inspirational reports here. It has been very hard and it still is. Unlike you I never recovered any function in my left hand and arm. I struggled for most of the last 5 years with elasticity, meaning any attempt to activate my hand was thwarted by the continual stiffness. Via the community OT Service I was referred to a clinic which gave me BOTOX treatment which was effective. This stopped last year with the pandemic. The good news though is that mostly now, without the BOTOX the stiffness has significantly reduced, by itself.
Other bits of good news include a big improvement in the foot drop, it isn’t completely recovered but enough that I rather attempt walking withou the FES aid than with.

The latter part of the last few years have been focused on trying to strike a balance between accepting being disabled and continuing to work for recovery.
I am more at ease with using my wheelchair now and do not think it in any way " giving up" it helps me to live more fully.
A big achievement a couple of years back was to get approved to return to driving. That was hard work and short lived. I had what I thought was a minor scrape with a roadside fence when taking a left turn too tightly. The insurance company insisted the car was a write off much to my dismay. But I got decent compensation. I won’t now drive again. I don’t have the energy to source another car, and I wasn’t enjoying it much really to be honest.

I was very lucky to have avoided any serious cognitive damage, so I am able to read as much as I like, this has been a source of great joy and comfort to me as I get used to my enforced retirement. After the job fell apart I was able to get a benefit that did not require me to look for work was a very active 57 when the stroke stopped me in my tracks .
Im still a few years short of statutory retirement age and I can’t imagine any employer wanting to take me on at this late stage and I am not fit to work, so all in all I am accepting this now with some measure of relief.

So, it is all a bit messy really - there has been no smooth trajectory of recovery, and I haven’t recovered but I have to some extent come to terms with what has happened to me. I have had superb support from professionals and have been healed largely through the love of my family without whom I don’t know how I would have done anything.
So that’s rather a long testimony, thanks for the opportunity, if you’ve got this far, thanks for reading. It isn’t all good news but I hope some of it is relatable.
Keep on with the cooking, I haven’t got there yet, but I will! looking forward to year 7.
Best wishes
TONY

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Hello Marylin, “I don’t want to even think about things let alone do them”, yes, I get this all the time. Sometimes, the effort of thinking about the effort that it is going to take to do something, takes the wind out of me. I am sorry to hear of your complications, but glad you are seeking out the enjoyable things to balance the obstacles. My bedside table now looks like a pharmacy, it bores me every morning that I have to address the taking of pills when in the past, a coffee was all I needed to start my day. I agree with John’s reply that not knowing is a wonderful thing, or ignorance is bliss, we just don’t know what awaits around each corner, so seize the day and all that. It’s the only way to keep anxiety and fear at bay. Hope you’re having a relaxing weekend.

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Thank you Tony. Fortunately, I was already a pensioner when stroke hit. Glad you are doing what you can do despite your circumstances. Time for my nap as fatigue hits me every day at noon.

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Thanks Rups. I’m originally from Cardiff, but have no Welsh. Still love Wales though

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Hi Rups,
Some friends came for coffee this morning, after a discussion about those who had recently died, we agreed we were all on borrowed time, but we would all seize the day. The oldest of us is 80 and I will be 78 next weekend. Despite everything, life is good.

It sounds odd but I was almost relieved to get the blood cancer diagnosis, I thought that everybody at my local medical centre thought I was a hypochondriac, I kept saying I was feeling so tired and so unwell but couldn’t point out what was wrong and none of the GPs could find the cause of my clots as I was taking blood thinners and I just couldn’t recover from the TIA and endarterectomy. I like to know what I am fighting, to know the enemy.

We all appear to have a lot to cope with, I am a carer for my husband whose stroke caused him to lose the ability to say what he wants to or to understand situations or commands rapidly. He gets so frustrated, at least I can read, understand and write. He is more physically able than I am. We manage together. I am waiting for my clematis ‘Winter Beauty’ to flower, the buds are growing daily, so maybe we shall have beautiful white waxy bell like flowers for Christmas.

Never give up, keep striving but it is ok to have off days and occasional pity party, I had a blood cancer forum pity party the other day, a load of lovely guests joined me in a jolly good moan, it was very cathartic. I shall now go back to watching the rugby Ireland v NZ, Ireland are winning at the moment, not put off by the Hakka then. Marylin

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