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1

Hi everyone,

My name is Ken and I'm completely new to 'My stroke guide', so thought I would introduce myself.

I'm a 66 year old, married male living in Stratford upon Avon.

Last year, whilst in France I suffered a stroke at the beginning of August and was hospitalised for a month, being unable to move and having difficulty talking and eating. Additionally I suffered from terrible head pains which medication failed to resolve. Towards the end of the month I made a determined effort to get about, and gradually managed a few steps at a time with a walker. After 4 weeks I was repatriated to the UK and was hospitalised for a further three weeks during which time I increased my mobility to walking with a single stick, and gradually improved my eating and swallowing functions. The hospital also managec to control my head pains by prescribing Pregabalin. At the end of September I was discharged from hospital direct to our home. Here I continued with a number of balance exercises and daily walking. I felt myself very lucky to have escaped my stroke and maintain quite goid independance and mobility.

Now, 6 months on, whilst I do consider myself very lucky I find that I am becoming increasingly frustrated by my levels of fatigue, and my inability to 'hold my own', as I was once able to.

I find the levels of concentration needed to hold a conversation, to drive, to walk and in fact to undertake normal daily duties very tiring and equally frustrating.

I am no longer the man I was - and this is hard to accept. So, I think that physically I have survived, but mentally, I have much to come to terms with.

 

Does anyone have any ad ice or know of local counsellors who may be able to help.

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Hello and welcome to the site.  Just from reading your post I can tell that you have a positive attitude towards recovering from your stroke - you will continue to do well ? If you are able to spend some time reading the posts of other stroke survivors, you will soon see that they all suffer fatigue in some form or another - there's no escape ?, however you will find and establish your own routine and method for coping and minimising the impact as much as possible.  You have also identified that you are not the person you were pre-stroke, and this is also a common feature that you will share with other survivors.  

The folks on this site will give you advice and support, share anecdotes and frustrations, so you will not feel as though you are alone in this challenge.  Many have found counselling useful, as there is so much to learn about stroke and the impact on yourself and family, it's good to have an experienced and specialist counsellor.  

For now, allow yourself plenty of rest, keep checking the site, as I know you will soon receive replies and advice.  Best wishes, stay strong, ??

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Dear Ken

Sorry to hear that you had a stroke, but welcome to our forum.

I too found the physical side comparatively easy to 90% recover, but the cognitive stuff is the nasty bit.

Do try to get to the nearest SA group. Look at your GP surgery for details of other stroke groups that might exist. And/or go to the hospital stroke unit and see what they have there. You might also try your local church, they can be a mine of good information.

Stroke groups can give you a warmth of understanding that is generally missing. Only another SS (stroke survivor) really understands. Accept that the NHS after care is just about non existent. A national disgrace, but regretably true.

I will use counselling as I benefit greatly from it. Has to be a stroke trained counsellor. I also go to a relaxation group and a gentle yoga group. Your lovely positive attitude will serve you well.

I call the fatigue SF (stroke fatigue) as it is not the same as lack of sleep tiredness. 

You need to determine how much night time sleep you need and work very hard at ensuring you get that sleep. The SFwill slay you if you have insufficient night sleep. In addition you need to pace yourself through the day. Many can manage a morning then have to rest for the safternoon and evening. I can only do about 45 minutes then I need to rest. You shouldnt fight the fatigue, you need rest.

Yes, you are near the beginning of the long slow road to some recovery and yes, you are not the man you used to be. But you are becoming a new man and thats a desireable thought. I do menial voluntary work and that gives me a sense of being useful. No way can I work at paid employment. 

You do not mention your formal diagnosis. When the UK hospital discharged you, they will have sent a letter to your GP. You should have a copy. If not, then ask the GP staff to provide one.  I recommend you keep that copy safe. I have needed mine several times. 

You write a very good post. At just six months that is impressive.Recovery is quite good for about two years and even then, you get some recovery after that.You need to work at it. The SA leaflets are good. Do get them (on this site or at the GPs or at the hospital).

I smile several times a day (an amazingly effective action)

Remain as positive as I can (think what I can do and not what I can not do)

And lots of us are here on this site itching to offer you a helping hand.

Best wishes

Colin

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Hi Colin,

 

Thanks for your reply, its very informative and encouraging. My stroke diagnosis was an ischamic stroke thats affected my cerebellum aspect of my brain, hence I suffered initially with balance and coordination. However, I have read up about neuro plasticity and used this during my physical recovery. I would recommend it to anyone - it worked for me.

 

I think I'll take your advice and try and fin a stroke counsellor to help me get past this current hurdle.

 

Thanks again for your advice

 

Ken

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Hi Nicabella,

 

Thanks very much for your reply. Its very encouraging to know that what I am experiencing is not unique to me. It will be useful to receive recommendations from others who have already been through the hurdles.

I have to say that support via the NHS has been quite abyssmal, but it sound like a famikiar story for all survivors.

 

Now the search begins for an experienced stroke counsellor.

 

Thanks again,

 

Ken

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Hello Ken.

Glad you have found this guide, it will help, promise.

The hardest part of me having a stroke is realising I am not the same person, and when you said " holding your own" it made me cry. That is exactly how I feel. How can I get used to being this, when it is not who I used to be? It's like stepping into someone else's shoes who you didn't know.

My main worry is SF. It comes at weird times, like today, I did two loads of washing and put it on the maiden and HAD to come and lie on the couch for a bit. I had a stroke just over 12 months ago and even though Carl, my partner for 36 years, is very understanding, he patronises me, even though I tell him each and every time he does it, he still does it. There is a difference in helping and being a pain!  Being asked "can you manage?" There's only a few times I can roll my eyes and politely say yes.

I feel guilty for having fatigue. It spoils each and every day. Despite not being able to hold my own, I just found out that Carl had been hiding the fact that my lower wage was having an impact on our finances. He always said we are fine and we don't rely on your wages. That wasn't quite the truth. And at me being 53 ( I think) and Carl 54, we have just had to remortgage our house. I can only manage to work for two afternoons a week, I am a teaching assistant at our local primary school, I can't bear the noise the children sometimes make, but just try and move myself for a bit away from the noise. 

One thing I have found to be particularly good for me is going to the gym. When it was first suggested I said no way, that's not me. I'm 8 stone 3 and five foot two and thought the excersise I did each day was quite enough thankyou. But now I would never give it up. I go every Monday, and have excellent ability to do things when I get home, tense the two loads ofcwashing. And it makes me feel good. I do the machines like I only have one arm and one leg, I use my weaker limbs to do the excersise and I am seeing progress.

But going back to what made me post to yours, not holding my own.

This is the thing that most of us have to deal with. We are not the same and never will be. But we are alive. We survived. We HAVE to deal with it. This is our new different life and it will take some getting used to.

Think I have been a bit hard on Carl. Even though he won't read this I need to say that I wouldn't have been able to come this far without him ( and I will continue to go further) but if he wasn't here, I don't think I would be.

Ken, you are doing well all things considering, keep on doing well and please realise soon that you may not be the person you were, but you can be a bloody good new one!

 

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Thanks for your complimentary reply. 

The counsellor I was provided with was super. She was Stroke trained and employed by NHS. Not easy to get counselling, NHS waiting lists can be huge. I am willing to pay, but finding a good counsellor is hard, especially when we are not thinking too straigght !

Keep in touch

Colin

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Hello everyone.

Just joined this forum.

 

On Wednesday, 30th January 2020, I woke up expecting the day to be just another day in my life, I went to work, spent eight hours there, came home and was with my family. Nothing unusual to report at all that day. I didn't feel strange, no ailments, no nothing.

At 7.30pm, I was quite happy eating my evening meal when with no warning, no nothing, the left side of my face went numb ! I have a badly cracked tooth in the left side of my jaw and just put it down to that and carried on as normal with the intention of contacting the dentist in the morning.

How wrong was I ?

I went to work as normal on Thursday, but on advice, I went to see my GP and learnt, that to my horror, I had suffered a stroke !! No slurred speech, no drooping face (well apart from my normal look), no loss of use of any part of my body.

F.A.S.T. did not apply .....

Facial weakness – can they smile? Has their mouth or eye drooped?

Arm weakness – can they raise both arms?

Speech problems – can they speak clearly and can they understand what you're saying?

Time – it's time to call 999 immediately if you see any of these symptoms.

I was taken to West Suffolk Hospital, lunchtime on Thursday, where I was whisked through having an MRI, ECG, CT scan etc and kept in overnight. I was later informed more about what had happened to me and why. I spent two days in the care of the hospital

Talk about a massive Wake Up Call !!!

I did not think my lifestyle was that bad, but I have high blood pressure, a high cholesterol level, I smoke and my body just did not like it.

I have changed my lifestyle and have become more like a bear, eating berries and nuts. I have said goodbye to a number of various foodstuffs and now watch what I eat & drink.
No, I have not given up smoking because I can't whilst I am at home but do plan to do so soon.

I count myself very lucky to have experienced such an event and come out the other side with none of the usual permanent affects relating to a stroke, but three down the line, still have a numb left side of my mouth and teeth.

Just thought I would introduce myself and see what I can learn about recovery from you all.

Doug

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Hi doughy name is Yvonne I had a stroke April 2019 I actually  woke up with it as when I got out of bed my left arm was numb so was my left leg which I was dragging behind me at first I thought I'd been sleeping funny but that wasn't the case I even got ready for work saw to my dogs and started out for work when I knew I should go back I phoned doctors and got in a hour later who told me I hadn't had a stroke as I'd got too much power in arm and leg I went home but got worse so my husband called paramedics who called for a ambulance straightaway  like you I suffer from high blood pressure and cholesterol and was a 30 a day smoker for 40 years I had cut scan and MRI which came back as a stroke they took me for a scan on my neck and what I saw wasn't nice the left side was nice and sedate but the right side looked like fireworks going g off they told me this was down to smoking when I got home I gave up smoking I went on healthier eating and joined a gym I lost a stone I  weight and felt healthier unfortunately winter came started eating warm comfort food and gave up the gym I have now put that stone  back on but no matter how much I crave a fag which isn't very often now I stick a extra chewing gum in I didn't have a vape and only had nicorette for a short time as it has nicotine in and was still causing blood pressure to be high that stroke terrified me my memory still isn't right sometimes I still limp and get that awful fatigue and need to loose that stone again you are doing well but please try to give smoking up

10

Hi everyone, my name is Kevin I am 58

On the 21st Jan 2020 I was assessing one of my colleagues teaching on a first aid course, we were discussing strokes and how important it was to understand the FAST test.

On Friday 24th Jan 2020 at work I tripped going up the stairs at work and thought nothing of it, I drove home, once at home I started to feel strange, my slippers didn’t feel comfortable on my left foot, at first I thought I had them on the wrong feet, I kicked them off.

I stumbled a few times in our doors that spilt our living room from our kitchen, I put it down to a tough week at work we had been quiet busy.

I work up on Saturday morning 25th Jan 2020, I felt worse, my left left wasn’t working correctly, it felt like I was dragging my left foot behind me, as I teach first aid at work, I felt like I was having a stroke.

I stood still and did the FAST test, my left arm dropped I couldn’t hold it up, the left side of my face was numb,I knew I was having a stroke of some sort.

I broke down in tears and asked my wife to take me to my doctors who did some test on me and said what do you think it is and I said I think I am having a Stroke and she said I think you are right.

I was in Leeds general infirmary within a hour, and on the stroke ward. I had a CT scan, and confirmed that I had a stroke which frightened me and was quite upset. 

I had a ultrasound scan on my neck to make sure the blood supply to my brain was working correctly and a day later a MRI scan which confirmed my stroke and that they found Small blood clot and a 2mm aneurysm on the right of my brain.

I had numbness in my left hand too.

In the few days to follow I was visited by my family which made me feel a lot better and determined to get as well as I could be to leave hospital and go home. Even though I had to eat pured food for a few days (I now know why babies spit it out) I know I had to each to get strong. I stayed in hospital for 6 Days and I am now at home improving as much as I can.

I have had to surrender my HGV licence for a year, I am a driver trainer at work.i don’t teach anymore I just assess their capability to drive well.

i hope to get back to driving my car soon?

I can’t believe how tired I get, but understand I need to rest to repair my brain, does anyone know how long that takes to get better? I drive a company car to get around and various long distances of 100 miles plus in a day sometimes.

i am not worried about work, I am more focused on getting well, my wife, sons and grandchildren have been fantastic, a cuddle means the world to me.

i hope to get back to as much full fitness as I can.

hope to hear from you all soon.

Lets all dig deep, find some reserve energy and crack on and get well soon.

Kind regards

Kevin

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Kevin, Welcome to our forum. You appear to have the right attitude towards recovery and you,clearly have a loving family supporting you. You ask how long recovery takes. All I can say is that it varies from individual to individual. For most of us, it is slower than we would wish. I am four years post stroke, but still have a weak left arm and hand and fatigue hits me every day. I have improved enormously, but am not yet the person I was before the stroke.However, I stick at it, go to three exercise classes a week and try to maintain a positive attitude. Yes, there are still days when I feel down, but, thank God, I am still here.

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Dear Kevin

Sorry to learn that a stroke bit you, but welcome to our forum.

It is odd how some of us know we are having/had a stroke. Me too. I didnt know anything about strokes, yet I knew I was having one. The problem with FAST is that so many of us think its all four of the letters, but in fact its any one of them.

I am guessing that you did get left with an "infarct". Many of us have that, as a result of an "ischemic" attack. It is a good plan to read the letter from the hospital to the GP. It gives the diagnosis. You will need that document in the future. If you dont have it, ask the staff at the GP surgery. No need for an appointment, the staff should arrange it for you. You are entitled to a copy.

There is an automatic "ban" on driving for a month. I got back to driving a few weeks later. It gives me independence. The DVLA didnt need to know nor did my insurance company, which is good. Its down to me to ensure I am fit to drive. You will be good at this, knowing when you are ready to drive. I am always sad when stroke survivors have HGV licences. It is your livelihood and it is taken away in an instant.

I dont know the consequences of an aneurism. Is that instead of an infarct ? All this medic speak is confusing.

My diagnosis included "post stroke tiredness". Boy what an understatement.

For the first few months the tiredness, which I call SF (stroke fatigue) is likely to be present. It does ease but the timescale is totally unknown. We are all different as no two strokes are ever the same. I have observed that returning to work is often possible after about nine months. A few get back in weeks and a bigger few, like me, couldnt work after some years.

It is hard to say we will get better. Assuming the infarct has happened, then the damage is permanent so it doesnt really get better. During the first three months there is probably some damaged bits around the infarct. This damaged part can recover. You need to give your brain the chance to do this repair. It needs endless rest, no stress, and lots of water. Please hydrate every day, all day, for a while.

In addition, your amazing brain will work around the permanently destroyed bits. It creates new pathways given rest and time. Medic speak is neuro plasticity.

Please do physical exercise, to keep all your joints, muscles etc in working order. Very basic is to walk everyday. Build up the walk to about a mile. I got to a mile after two months. And ideally use a gym supervised by someone with stroke training. None of your limbs are damaged, its "just" the messaging service. 

The physical recovery is often the easier bit. The "cognitive" stuff is harder. You have already been introduced to part of this as your emotions are, like many of us, all over the shop. Tears do flow. I am a man and I dont cry, well I do now. It eases over the months.

The stroke association do really good leaflets. I read them and they helped me understand. Maybe your family could read them so they understand and can help you. These leaflets are often at the GP surgery, almost certainly at the hospital stroke unit and also they are online on this site. I think yje SA will send you a pack of these, if asked.

Please smile repeatedly. There is good medical reasons why this helps get your brain going well.

Please be positive. Think what you can do rather than what you cant. I have read thousands of messages on this site and its the positive people who recover best.

Lots of us are here for you. You are not alone.

Ask anything, someone will have some ideas.

Best wishes

Colin

 

 

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Hi Colin 

thank you for your message, you have provided me with more information than I have received from the NHS so far, I found your post very useful.

kind regards

Kevin

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Hi John 

thank you for your message.

i am still currently off work, I am a HGV driving instructor, although I now just assess people’s Ability to drive well. 

I was looked after really well in the hospital on the stroke ward in Leeds.

i am now home on the road to recovery how ever long that will be. 

I am taking everything nice and steady and doing a lIttle bit everyday.  I think it’s good to stay positive and I look forward to my recovery which ever path it takes.

kind regards

Kevin

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Hi Kevin

I am 52 and had my stroke back in September. I suffered from fatigue for quite some time, but since just before Christmas I no longer suffer, unless I do something which particuarly tests my eyesight (the only thing that was affected) and then I can feel quite drained. I exercise every day and do all the things I used to do apart from drive which I can't currently do due to me vision. I think a positive attitude does wonders. Feeling sorry for yourself doesn't help you get better, and I feel that I have been given a second chance and have to make the most of it - so keep positive.

16

There is a lot more that can be shared with you, but no doubt others are like me and dont want to drown you in things that yo can take in your stride at a later date.

I got so much help from posts on the forum when I was in the early months, so much.

Only another SS will be able to understand what you are going through.

The NHS do not have time to deal with us. We need a separate body that will care for people like me who need help but are walking wounded, and deal with thsoe who are heavily disabled.

One day perhaps, one day.

You will please have in mind that I am not medically trained and just give my own experiences along with what I have learnt from other SS.

Keep on keeping on. You will get a good recovery, I feel sure.

Colin

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Hi Colin 

thankyou for your kind words.

i understand what you mean that only SS people will understand each other.

i can’t understand why my head feels so vacant and empty at the moment.

kind regards

Kevin

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Hi Colin 

thank you for your message.

I know it’s early days yet, I had my stroke on the 25th Jan, nearly. Month has passed.

i can’t believe how empty and vacant my head feels at the moment.

I am exercising as much as I can, getting out and walking with a stick at the moment. I hope I can get back to work one day, we shall see.

I love to garden, I have two sons and four grandchildren.

Did you get any aftercare when you left the hospital?

Kind regards

Kevin

19

Dear Kevin

Yes head will feel most unwell for several months, you are so good that you are only vacant and empty after  one month. And so good that you write a coherent posting.

I exercised gently to start with. A walk each day, with stick, built up to one mile after several weeks. I moved all joints and muscles with gentle inddoor exercis. very gentle, just keep evertything moving. I dont think anyone knows the tie up between the cognitive stuff and the mobility stuff. So I just tried to do equally. Stupid move when, after a few months, I ignored the mobility and concentrated on the cognitive. That was a mistake. Should have kept both going each day.

After care: I had an early discharge package. Hospital checked out my home situation then said I could go home and a team would visit me each working day. This team arrived each working day and helped me  a lot. All stroke specialists. One doctor, one nurse, one physio and one counsellor. There were others such as benefits expert and so on, but I am financial secure. My bungalow is ideal being all flat, low thresholds, bathroom next to bedroom, warm, airy and above all a wife at home who agreed to look after me.

This six week support was everything I might need. Wonderful. So helpful. At six weeks and one day it all stopped. A visit to the consultant at about ten weeks. He said that I was one of the few who walked in to his room.

GP was supportive but admitted he knew next to nothing about stroke.

There is virtually no other aftercare for me. I have found my own private gentle yoga teacher. I found my own relaxation classes. I made it to the voluntary stroke group. The SA dont cover this part of the country. The voluntary stroke group is wonderful. But not free.

Along wih many others, I seemed to have heart problems post stroke. So I had outpatients appointment for scans etc. I knew my heart was very strong, so no probs.

It is a very long journey of recovery. Totally different from anything else we are likely to encounter.

No one from NHS will come to your aid.

I soon realized that I was the one who effected my recovery. No one else can.

Family support is good. But you might need to excuse them before they give up on you (possibly at around six weeks).

Many other SS encounter oppressive attitudes from family and friends. So rejoice that yours are with you. The year I had a stroke, the info was that 65% of couples broke up after stroke. So rejoice that you and yours are with you. I have two sons in their 40s and two gkids. They are two hours drive away.

Please read the SA leaflets. Please get your close family to read the leaflets.

Things do ease. I like to read my stroke diary and realize how far I have progressed. I did the goals thing. But perhaps my damage was a bit worse. I was 90% paralyzed and thought that was for life, so walking ten yards was utter joy.

Please ask anything. Many on here will give you their experiences. John is especially good and wise. 

Keep positive

Colin

 

 

 

 

 

 

 

 

20

Hi

All I can say is it is early days for you and things do get better, but not as quickly as you would like.

I have had some aftercare but a bit hit and miss. I do a lot through my GP who chases things up for me, and once chased up I have had quite a lot of support. I think you sometimes have to chase as it is not always obvious what is available out there in terms of support, but once you push and explore you find it is out there. Try asking your GP to contact the hospital on your behalf if you feel you are not getting everything you need.

I like you love the garden and apart from not seeing the odd branch or weed I am still able to enjoy my hobby.

Just keep positive and things will gradually improve but you need to be patient!!