What help should I be having?

Emotional effects
1

I had a stroke mid October '19 which has left me with a right leg limp, pins and needles in my fingers and a weaknessin my lower right arm. I know I've got off lightly but I'm really frustrated by the lack of information I've been given. I don't think it helped that I didn't get to A&E until my return to the UK 24 hours after it all started (I didn't even realise it was a stroke) and then I was treated in a different county.

Since returning home after 5 days in hospital I've had a brief conversation with the doctor and the pharmacist - neither of which I'd considered helpful. I'm now waiting for a first physio appt which should happen in a couple of days. What am I supposed to be doing? I have good days, bad days and soem occasional really depressing-down-days. Reading stuff on here is a bit depressing too so please give me some positives and easy starters!!

2

Hi Mel

Hope you're doing ok? It's so hard to see any positives some days, especially I. The early days, I remember it well. I had my stroke a year ago and was left with very little obvious physical effects but mentally it took a while to get through things. I am doing so much better  or though so please take the positives.

i found the lack of understanding and help in the early stages very difficult so I can understand your frustration. 
 

Do you know the cause of the stroke? What have doctors said? 
x

 

3

Dear Mel

Sorry to learn of the stroke that bit you, but welcome to the forum. 

The headline is "what help should I be having". I suggest you need to consider what you need as opposed to what you will be given. 

Can i suggest a few things to do right now. First, make sure you have a copy of the letter from the hospital to your GP. If you dont have it then get the GP staff (no need for nurses or doctors appointments) to provide you with a copy. Second, start a stroke diary noting what the day has been like. I keep a written diary (the online version wasnt available in 2015) and it helps a lot. Thirdly, consider what your life is like now and how you want your life to be in a few months. Split that in to goals that you want to achieve, then split the goals in to signpots, being steps towards each goal.

Next, keep all parts of your body moving. Just a bit of movement. Include the bits that have not been affected as well as the bits that are affected. In rough terms, keep your left side working equally with the right side.

Next, listen to what your brain is doing to you. When you get that awful fatigue, technically "post stroke tiredness", do not fight it. Rest. Give your brain plenty of water. It will be bubbling away to get around the damage and get hot, so it needs liquid. Your brain doesnt actually feel pain so it cant ask for water.

Try your best to establish a good night time sleep pattern. This should be independent from the naps you need to deal with the fatigue.

Find any local help groups. the stroke association might be a good starting point. Your GP surgery will have leaflets. Your hospital will have leaflets. Try your local church which could be a mine of helpful info. The SA leaflets are good, please read them.

Try to accept that no one else can get you "better". Only you can do that. Consider therapy and or counselling and consider whether or not you should pay privately.

Stroke does give waves of depression and I urge you to fight them off before they get a grip on you. 

Yes it is depressing reading how bad things can be after stroke.

However, you survived, I survived, many do not. So we are the chosen ones.

All the issues you mention are common to many stroke survivors. But no two of us are the same. Every stroke is different.

Do ask and there is likely to be someone on here who will give advice. The best advice for me came from those who had had a stroke months  and even years before mine. They were my angels.

I hereby promise that things will get better for you. This happens so slowly that you wont notice. But things do improve.

Please be positive. I have read thousands of posts and the positive SS are the ones with the best recoveries.

Please smile endlessly. Need not be a genuine smile. This is amazingly helpful.

And please, there are lots of us out here willing you forward. You are not alone.

Best wishes

Colin

 

 

 

 

 

 

 

 

4

It is very early days for you and it does take some time to adjust.  It is 6 months since mine and, like you, I had few outward signs.  When the consultant discharged me his advice was to keep on walking my dogs, that was it!  The day I got home I got a call from a speech therapist who said she could understand me quite well so neither of us felt I needed speech therapy.  My GPs surgery rang and said they wanted to see me in two weeks to check my BP but as I couldn't drive to get there they settled for me sending them a spreadsheet.  That has been it in terms of help.  I had a follow up with the hospital and an MRI scan after a few weeks.  When I was discharged from hospital I was given documents detailing the type of stroke etc and giving me a long list of people at the hospital if I needed further advice.

I have simply worked on my own, I read that the brain will work hard to heal itself and it does.  It works to build new 'pathways' to replace those you have lost.  It isn't always as quick as you want!  So anything I had trouble with I kept trying and it does get better.  I struggled with the touch screen on my phone so I played games on my phone and tablet. I had trouble with grip so I got a  squeezy ball, I got pins and needles in my feet so I used a roller ...... you get the idea.  

Yes you do tend to feel scared about it happening again but that does tend to get easier over time.  Yes I get really tired, and that frustrates me, but I assumed that was because my brain was working so hard healing.  I find a combination of resting when I need to and making sure I am eating the right things helps (in my case having something like a egg sandwich during the day helps!)

When I saw the consultant she explained that the blood that leaked into my brain when I had the stroke takes around 3 months to be reabsorbed into the body.  That gave me an idea of one timescale at least and it certainly marked an improvement for me.

Every stroke is different and everyone deals with it in their own way.  Yes coming on here you do get a wide range of experiences and some are quite depressing so I tend to limit the number of times I look.  I rarely respond, but I do for those like yours.  Good luck on your journey and I am sure you will get there.  Your own way and in your own time.

Joan

5

Hi Mel, I had a subarachnoid hemorrhage in April this year- although I am recovering well I felt that I was given no information, my OT visited twice but because I am able to wash, get dressed and make a cup of tea she doesn't need to visit but did tell me that we now have a stroke nurse in our area and would see if she would visit for a chat, great I thought- no because the stroke nurse advised my OT that I hadn't suffered a stroke so there was no point! I think a lot of recovery is reading, getting out in the fresh air and keep positive, one of the doctors at my practice told me that he wasn't a neurologist so didn't have the answers I was looking for - it can be very frustrating at times but keep smiling x

6

I had been told in the December after an MRI I was high risk of a stoke , but not referred back to my GP or given advise on how to avoid one . In the July I went to the doctor due to a very poor memory and speech probs ( aphasia ) . I was sent for another MRI which came back saying I had had a serious of mini strokes . I was put on statins and blood thinners , but had no explanation as to the type of stroke I had , or any other help or information . No advise about going to A and E if I had anymore strokes .I am 65 not overweight , non smoker , social drinker . Still work, take care of my disabled husband , plus I am a student 4 days a week . I still struggle with getting words out sometimes and memory problems all the time . My maths / numbers are a serious problem and I often can’t see something I am looking for , even though it is actually there  I have lots of little books around the house to put notes in . I think I still have mini strokes , only recognisable when my memory totally fails me and listening to speach that sounds muddled up and I can’t figure out how to put my dogs harnesses on . I don’t go back to the doctor because I feel it’s a waste of time as there is nothing they will do . 

7

I had been told in the December after an MRI I was high risk of a stoke , but not referred back to my GP or given advise on how to avoid one . In the July I went to the doctor due to a very poor memory and speech probs ( aphasia ) . I was sent for another MRI which came back saying I had had a serious of mini strokes . I was put on statins and blood thinners , but had no explanation as to the type of stroke I had , or any other help or information . No advise about going to A and E if I had anymore strokes .I am 65 not overweight , non smoker , social drinker . Still work, take care of my disabled husband , plus I am a student 4 days a week . I still struggle with getting words out sometimes and memory problems all the time . My maths / numbers are a serious problem and I often can’t see something I am looking for , even though it is actually there  I have lots of little books around the house to put notes in . I think I still have mini strokes , only recognisable when my memory totally fails me and listening to speach that sounds muddled up and I can’t figure out how to put my dogs harnesses on . I don’t go back to the doctor because I feel it’s a waste of time as there is nothing they will do . 

8

Hi I really want to share my aftercare received.

At 47 I never thought I’d be a stroke survivor. Being incredibly fit active obsessive healthy diet. However blood clots caused a Posterior Cerebral Circulation Stroke on 4th July 2019. 3 weeks in hospital then released under Early Supported Discharge team. Stroke nurse met me in hospital and said they could offer up to six weeks care and Therapy.

OT,physiotherapist,Stroke nurse,neuropsychologist have worked with me everyday except weekends for the 1st six weeks. It was clear that towards the end off six weeks I still required more help, so since that day they have bent over backwards to work with me. My occupational therapist has even helped me return to work only couple hours 3 days a week. I can’t say how great full and lucky I’ve been. My journey is far from over, the healing process is still a long way off. My team have signed me off for now after 20 weeks of care. They have book to call me in January  for 6 month review and to see if I require more help.

My biggest fear is the fatigue,brain fog, I’ve also suffered headaches now for 5 months which is incredibly hard to manage daily. Eyesight has been damaged so glasses are a new feature. 

Can I also mention that my team even took the time to work with my wife and children to help them understand and cope with the event.

Carl 

 

 

9

I had my stroke in December 2015. I was 48, non smoker, non drinker and I'd never had high cholesterol. The initial CT scan in A&E didn't show anything but I was admitted as I'd lost all power on my left side. 3 days later an MRI scan confirmed a stroke. I had a tear in my right carotid artery so they assumed that a clot had formed to seal the tear then scattered to multiple areas of the brain. I was moved to the stroke ward where I had daily physio. I was in hospital 12 days in total. I had weekly physio when I was discharged and I was put on aspirin and a statin. The scan also showed that part of my left carotid artery didn't develop. Recently I was at A&E after a fall and the doctor asked how often I was reviewed since the stroke. I told him I had one review about 3 months after I left hospital. He told me to go to my GP and ask to be referred back for a review as it was quite serious. My GP emailed the consultant but I've haven't heard anything further. I find that I can't remember words, and my spelling and math are terrible now too. I have a slight weakness on my left side and sometimes get a tremor in my leg.

10

Hi Carl - That's great news that you have been signed off and had such fantastic care for 20 weeks.  Fatigue does get easier as time goes by but it is a slow process. I am 2 years plus post stroke and I have only recently been able to forego my afternoon rest.  I too was an obsessive healthy eater and went to the gym 3 times a week prior to my stroke. Strokes can happen to anyone, any age, any fitness level. I didn't realise until I joined this site after my stroke just how many young people have strokes.  There is much to be done by way of awareness campaigns in addition to the FAST campaign.

I am now back at the gym and doing a slow, gradual planned programme to get me back to the fitness level I used to be or as near as poss! Since I started 7 weeks ago, I have found I have more energy and no longer need the rest after lunch but everyone is different and you will find your own goals as time goes by.  Sadly the care you received is not available countrywide. Care differs greatly depending on your postcode. My aftercare was 3 visits from an occupational therapist and that was it.  Apart from 3 sessions with a neuro physio at hospital which I had to beg for and had to wait 9 months for on the NHS.  All my other physio I have paid private for but worth every penny.

It's also great that you have a family who have had the support from your team too.  Strokes hit partners and children just as hard as the victim so it's really good that they got help too.  Wishing you all the best on your recovery journey.

11

I have been very fortunate with the support from my doctor and various other services but my doctor put most of these in place for me.

12

Dear Carl

Thank you for sharing the positive aspect of NHS care. Your treatment is how it should be for everyone. I too had a similar good experience (Colchester hospital, brilliant) but only up to the stage that the ESD team left. But I think our happy experiences are the exception. Certainly the exception in 2015 when the stroke got me.

Please try to ensure that you deal with your cognitive problems equally with the physical stuff. I stupidly concentrated on the cognitive and, having learnt how to walk, ignored the finer points of the physical side. I am now paying the price as I have to try and remedy physical problems that I should have picked up four years ago.

Most of us SS were fit and healthy. If we are not fit then we become stroke victims not stroke survivors. In addition we need some luck as to just where the brain damage occurs. 

Stroke is not age related, as you rightly say. In the stroke resus room the nexy bay was a six year old. In fact, many babies have strokes before they are born. I knew nothing about stroke and I did initially associate it as something reserved for elderlies.

I call the fatigue/brain fog "stroke fatigue" (SF for short) and it is indeed the biggest factor in our later recovery. I try to counteract SF by resting before it gets a hold. I do lots of relaxation techniques. Sleep is vital. The SF eases but I cant dislodge it and it still overwhelms my life. I have to amend life a lot. It is a bad idea for me to try and think about life before stroke. To illustrate this:  I am an FCA with personal tax and pensions my specialization. No way can I now even do my own tax return, so I do not practice anything as an accountant. I have taken up a 5 hours per month voluntary admin job. And i wait on tables and I make tea and coffee for village church groups.

The change could not be more extreme !

Pre stroke I got headaches and quite a lot of migraine. Post stroke the migraines have almost disappeared (one every few months and they are not severe) and its now very rare to get a headache. I guess this just proves the maxim that no two strokes are the same. Others on this forum have spoken of eyesight issues and I hope you will share any info. I know nothing on this.

I usually suggest newcomers should smile a lot, be positive, and that they are not alone. I am so happy that you are already well on to these mantras, You have done things so well. And you write an excellent, lucid mail.

I would love to know which hospital treated you. I know Northwick Park are good and I hear that Lincoln is good. And also it would be great to know what medication you have been prescribed

Carry on with the good recovery.

Best wishes

Colin 

 

13

I have written a book Rag Doll for Christmas and a sequel Rag Doll Revisited by Ange Hilstron out now from Amazon, about my stroke at Christmas 2007... In It I describe the symptoms that were undiagnosed by my GP,  the surreal and comedic life in hospital at Christmas, and recovery afterwards.... both in rehab and at home.  Some of the replies to your experiences have been wonderful and I hope that my books will also be helpful to other survivors as well as their carers...  I live on my own, so I had to recover sufficiently well to look after myself.  I am now 90 years old !  Last year I visited my family for Christmas in NZ ...  it is essential to take one day at a time, have plenty of rest, and have a cunning plan ! 

14

Dear Angela

Thank you for sharing your succes with recovery. The stroke bit me 13/12/2015 and I have the atmosphere of a hospital approaching christmas  strongly welded in to my memory. 

I now also know what to ask for as a christmas present. I dont read much but I will enjoy the odd book, Yours next.

Colin

15

My husband suffered three mini strokes in 2008, had an initial follow up after being in hospital and has never had a follow up appointment since or any help from anyone!!!

16

The follow up for strokes is hopeless. And usually non existant.

So dont feel as though he is being left out !

Colin

17

Yes, Sadly as Colin says, follow up for Stroke patients is almost non-existent.  I had a full blood clot stroke in 2017 and only got a 6 week follow up and then left to get on with it. A lot depends on where you live as to what help you get.  I hope that, as his stroke was 11 years ago, he will have been given the appropriate medication from his GP to prevent it happening again and he is managing his recovery OK.

I have often said since my stroke, if we had suffered a heart attack, we would have been constantly monitored for the rest of our lives but stroke  victims are the poor relations to the NHS. Hopefully now Boris is throwing umpteen billions into it, things may improve. Hardest part is getting it fed through to the wards past the Big Wigs at the top!

18

I was never assessed for any disabilities or emotional problems.

19

Are you sure ? Try reading your discharge letter. It gives your diagnosis and will add the things the doctors found.

But if you had a full stroke then you are likely to have some, but not all, the mainy issues we all ahve. The SA leaflets are good and concise.

Our problems are generally cognitive and mobility. 

No two strokes are the same so its a hit and miss for the best expert doctors.

Colin

 

20

You're an inspiration; you go girl! I will be sure to have a look for your books on Amazon. Did you self publish?