New to group

Had my stroke Sept 2023. Rang for ambulance at 3.30 Sat am, nothing until 8.30. Paramedics didn’t realise I had had stroke until 11:00 am when I was on my way to hospital. Could not talk and could not lift head from bed. I also had Covid so I was kept away from all other patients. I was also having chemo and was told it could have been either that caused my stroke. After 2 weeks I was discharged home with a few aids to help me get around. Physio visited home twice, I am able to get around although balance is not good. The stroke affected my eyesight and it took 6 months to see an eye specialist. I did see local optician whilst waiting. 9 months later I am able to get around but not totally steady on my feet

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Welcome to the forum. It’s scary how many strokes go unrecognised. I hope you continue to make a good recovery.

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Hi and a big welcome to this forum. Glad you’re recovery is going well. If you do need some information or advice, jump on and ask away. There’s always someone here who will listen or offer some advice.

Look forward to hearing from you as your recovery continues.

Regards Sue

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Thank you both for your welcome messages. Hopefully I will be able to get to understand what happened and how I can get further help with my recovery. I’m getting there but there does not seem to be much help from the medical staff. I feel having a stroke is much worse than having my cancer. I think it’s the not knowing that frightens me. I felt looked after whilst having cancer treatment but very very alone with my stroke.

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That is so sad but very true. The good news is you are not alone here :smile: :people_hugging:

It would help to let us know a little more about your current abilities. Can we assume you are mobile? Can you drive? Are you able to get out and about? That sort of info always helps to better enable us to make more useful suggestions for you.

For instance, AgeUK run Strength & Balance classes around the country (though not everywhere) which could benefit you. You clearly have access to the internet and there are numerous online sites for stroke rehab exercise.

And there are many many posts on here, some with useful links, which may be of help to you. Just use the search bar above right via clicking on the :mag: magnifying glass.

Some of us also put together a useful post Welcome (just click on the blue text) on what we wish we’d been told, which you might find helpful.

None of us are qualified experts or health professionals,
other than in our own strokes :wink: :blush:
But we are happy to help each other wherever we can, on our road to recovery :slightly_smiling_face:

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That’s what having a stroke is like… it’s the aftermath that nobody knows how to deal with. Wishing you good luck, ciao, pando

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From my experience this is how a lot of stroke survivors feel. I know when I was let out of hospital and told “See you in a year” I felt abandoned. I then looked for help in my local area and there is none. It’s a lonely road but I’ve found this forum and the online activities to be really useful and give you the opportunity to talk to others who have experienced similar.

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Thank you so much I did find your message so useful and I am currently working my way through the information given .

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I am able to walk a short distance with sticks and on really bad days, a walker. I am able to drive, I only drive though when I am having a good day. I have had my eyes checked and glasses have sorted out my issues with short sightedness. I have no issues with my arms and legs and have no numbness and can feel everything, so no loss of feelings. My stroke affected my right side, including my speech, balance. My speech came back after 4 days and I’m still working on my balance :blush:. I am not yet back at work but I have had company doctor asking questions. I have just finished chemo for bowel cancer and it looks like the cancer has cleared off for the second time. The downside is my rheumatoid arthritis has returned after the chemo kept it at bay. When I had my stroke in Sept 2023 I also had Covid to deal with. Looking back I seemed to have improved a lot but sometimes it feels that I have not got any further forward. I have one and a half years before I retire and I am hoping I can return to work, even if it’s part time :grin:

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You’ve certainly had your fair share of troubles, and if as the saying goes, bad luck comes in 3’s, then you’ve certainly had your 3!

My stroke affected my right side too and my main exercise for the first year was walking. I worked my way up to an hour walking in that first year, I’m over 3yrs post stroke and my balance was better by the end of it. Dare I ask how much weight you’ve lost?

There is a lost of muscle wastage after a stroke due to lack of mobility. So between your chemo and stroke, I dare say you’ve lost a fair bit.

You tire a lot quicker with muscle wastage, what little muscle you do have is more frequently fatigued, so you can’t do the half of what you did before all this started. I couldn’t even push the hoover around! You can get it back, but it does take hard work and effort, daily!

You can do chair based exercises on the internet which will help a lot. Building your core strength (belly and hips :wink:) will help enormously for your balance. One simple exercise to get you started is sit up . . . in your armchair :laughing: I’m not joking though! Just sit back in armchair or the couch, nice and relaxed, then bring yourself to sitting upright.

Do this by first breathing in then out a couple of times first and as you breath out, pull your tummy muscles in as though you are trying to touch your bellybutton to your spine. Do this 3 times to get an idea of how it should feel.
Then each time you pull your tummy in, let it propel to sit upright.
Hold that position for a moment or two then relax back.
Remember to keep breathing! Pulling your abs in shouldn’t restrict your breathing.

This is a nice little exercise you can be doing while watching tv. But it is a valuable little exercise for engaging and strengthening the muscle around your waist, hips, buttocks and backs of thighs as they all get activated in that one little movement. And over time you can progress onto the harder stuff :wink:

How are you things like cognition, brain fog, fatigue? Then seem to be some of the more common after effects of strokes.

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I get tired very quickly and most days around 1:00 I’ll read my book and have a lie down. I forgot to mention I have a stoma and COPD so I will have to be careful with exercises as I have a hernia from my stoma. It’s all sent to try us but I’ll give it a go :grimacing:. I bought a small exercise machine to help with the muscles in my legs when it’s raining outside. I have lost 3 kilos since my stroke and hope to lose more.

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Hi @Sue5 & welcome to the community. You have certainly had your share of medical issues. I hope that’s it for you now.

You’re right about cancer care being better than stroke care. I have a pre cancerous condition & even that has seen me have great care & help. Stroke care does seem to be a bit of a postcode lottery.

It sounds like you are progressing ok which is great to hear. Managing fatigue is important but you might have had to deal with that after chemo so you might know more than us.

Wishing you all the best.

Ann

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Thank you Ann. I wish I had joined the group earlier I would have felt a lot more positive than I do now. My Stroke consultant discharged me after about 5 months, I did not know. It was my oncology consultant that told me. I was discharged from hospital when I had stroke and it took the stroke team 4 months to do work on my steps to the property so I could get out. I had a phone call from this team after 6 months to see how I was. I just find the whole situation unbelievable and would hate to have another stroke and have to go through it again, even down to the hospital staff asking me if I would like to be resuscitated if need be :face_with_symbols_over_mouth:

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Sounds like you had a difficult experience with the stroke team. 4 months of not heing able to leave the house isn’t good at all.
Here’s to never having to go through it again.

Best wishes

Ann

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Hi sue5, welcome to the forum. I was lucky in as much as I had loads of help from both the NHS and “other” bodies. But the “stroke” road can be a lonely and a long one. I had both mobility issues and eyesight problems and a few years on I still cant drive and I still have balance and eye sight issues. One of my saving graces is meeting another stroke survivor who had his stroke 12 years ago and he says he is still getting better, This gives me something to aim for in my recovery. Also the online “balance exercises” are a great help in helping mobility so I recommend you give them a try - they have worked wonders for me. Hope you improve soon . Hobbes

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Hi Hobbes, thank you for your email. We seem to have the same issues after our stroke. I have driven my car after having eye tests at hospital which took 6 months. I also went to Specsavers who also checked my vision. I am better driving than walking. When I don’t feel great I don’t drive anyway and when ok I don’t drive too far. I have had an Occupational Therapist from where I work phoned me last week, it looks like my works might consider me working just mornings at home. I don’t think I could work any more hours as I feel tired most days still and need to sleep. I sleep most nights from about 7pm through till about 3 am, that is when I had my stroke and I still think it plays on my mind and I am wide awake until about 5am. It’s nice to hear that you are improving and I am positive in me walking without my sticks in the next 6 months. I walk round the house easier than I do outside. I think it’s because of the open space as when you are indoors you can grab hold of something when you are unstable on your feet. Keep smiling :blush:

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I forgot to say I will check out the online “balance exercises” as apart from walking around with my sticks and walker and had no other help, thank you

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Hi @Sue5

I’m obviously a bit late to the party! as your opening post was a week ago.

Anyway hello and sorry you have had reason to join us - as you are discovering there are plenty of folk who will share their experience and there are a lot of posts that cover every aspect. I see Emerald mentioned the welcome post which if you haven’t already looked at I would recommend. So you might like to know that some of us meet online to chat about nothing in particular Thus. from 1pm uk time on https://bit.ly/StrokeCafe

You would be most welcome to join us too :slight_smile:

Several folk have mentioned exercise videos - easiest way to find some is to use the hamburger menu three horizontal bars at the top of the forum screen - then select videos from the menu that opens then select playlists and scroll down until you come to red group amber group or green group depending on how capable and energetic you’re feeling.

There are lots on YouTube too and you can find them better ones by searching with magnifying glass in this forum for links

If you’ve got any specific questions the magnifying glass is useful for answering them. Of course you can just do a post :frowning:

Caio
Simon

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Thank you for your email Simon,

I am finding some very informative posts and I will look at the exercises that you have pointed out.

Would love to join you all on Thursday but I have hospital appt unfortunately.

Thank you

Sue

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We are there every Thursday
Yr welcome Any week :slight_smile:

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