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TalkStroke closes on 5 February 2018

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Hi all,

My husband (aged 54) had malignant hypertension and a brain bleed 5 weeks ago. It left him with very bad double vision and blurriness, memory issues, but thankfully minimal limb function loss. My world is upside-down but work have been great and I am back part time for now. The vision team in the local hospital prescribed a prism for the double vision and already the vision has improved enough so my husband finds he can no longer see through the prism, which is fantastic. There are little victories each day but I feel terrible guilt about being frustrated and angry that my husband is not the same person anymore. It is like the Bodysnatchers (sci-fi film) have replaced him with someone who is nearly the same but not quite? Our life was wonderful before, going for long walks on the coast, he loves gardening and growing our own food on our small patch. We talk about him returning to pottering around when the weather improves but my heart breaks to see what this has done to him. I am mostly teetering on bursting into tears everywhere I go. I have not shared much in work as I cannot cope with the sympathy and kind words. This may sound weird but I feel I need to stay strong for my husband.

May I ask if anyone felt guilty/angry in the early days? I am thankful that he is already having small walks around the supermarket with me and his sleepiness is improving so his spirits are still up. Should I gently push him a little to try and extend his range of tasks? The hospital have not provided any support as he was able to "live independently" which he certainly wasn't on discharge. I know he won't probably return to how he was but I would appreciate any advice in the early days to help me help him reach his goals. thank you.

Hi there. Stroke is devastating for everyone involved. I am 74 and had mine two years ago. Both my partner and I experienced similar emotions to yourself and like you, we had enjoyed long walks and an active life. My partner thought, at first, that we had nothing to look forward to and I expected to die at any minute. However, I had physio at home, once discharged and, through will power, built up my ability to walk further using a stick and do other things. Your hubby is younger than me and should improve faster. I can now, bake, cook, make jam and do a few other things. We can also go on short breaks.

I had to accept that ‘the old me’ might not come back, and that is frustrating. However, if tasks are broken down into stages and journeys planned in advance, life isn’t too bad. I also encourage my partner to have some time to himself and I hate being help. I go to three exercise classes for active seniors every week and that has been a great help.

Please check what support networks exist for stroke survivors and carers in your area. I live close to a Life After Stroke Centre and they run a range of classes and social activities. I still have post stroke fatigue, but have to accept that and rest for an hour every day.

You will both have good days and bad days, but your lives are not over,

Dear Pies
So sorry to hear about your husbands stroke, Do wish him well from a fellow SS.
Your comment about bodysnatchers is spot on, I hadn't thought of that phrase before.
He is not the same person and he will never be the same. Maybe similar but not the same.
At the end of the day you have a choice. Try to get along and enjoy your new partner or split.
From day one I insisted my wife should spend a couple of hours away from me. Today is my 2nd anniversary, and I am still changing, developing and so on. And my wife now has a few days every month away from me and a few hours nearly every day away from me.

My garden is about 80 meters long. I am not a keen gardener but I have chosen that my main therapy is keeping the garden straight. I grow veg (I am better at veg than flowers). mow the lawn and everything else. I do this in sessions of 45 minutes then I rest. It is something constructive, a link with the past and it keeps me away from my partner, who doesn't like gardening.

My early physical recovery was amazingly good.So at about 95% recovery I stopped and tried to get the mental side straight. Big mistake. Your partner should continue to work on the physical side, do not stop, keep going. Mental and physical need to recover hand in hand.

I am not covered by the stroke association, but there is an excellent voluntary group and it is wonderful for me to be with them. They also have sessions for carers. Even days out. Being with someone in a similar position may hep you and you might also exchange tips.

The emotional change for us SS is very substantial. I never cried. Now i do. Anxiety, helplessness frustration all and more are with me. Hardly surprising that this can be passed to ones partner.

A trip to the supermarket is an advanced improvement. Well done to him for doing that. My local supermarket (co-op) welcomes customers with dementia. I told them about my condition and I get help when needed and, above all, consideration.
Should you try and push him to the next tasks ? Well no. He really needs to make his own recovery. If you are really clever and can help him to decide he must do more, then that's the perfect scenario. But its up to him. No one else can mend us, we have to do this ourselves.

I keep a stroke diary. A very brief daily summary of how I am going. How much sleep. How much discomfort. And a note of what I did. Recovery is so slow i cant see any improvement day to day. But reading my diary shows me there is improvement month by month.
I also wrote down my goals. Make my bed. Walk to the neighbours. Drive. etc etc.I had 10 goals. Then I wrote signposts for each goal. Drive up the driveway, drive to the local shops. Drive to the town etc etc. I am still on those signposts. I drive for 30 minutes and look to achieve a 2 hour journey one day.
A friend said to me "OK you want to drive, how are you going to do it?" That was a good shock to my system. And spurred me on.
Your partner is not ill. He is injured. Its all a bit easier from here onwards. The worst is past.

As always I rabbit on.
Best wishes
Colin

Colin, I hope you meant it is all ‘uphill’.

John
My remnants of aphasia still persist. Not sure whether its uphill or downdale my intention was to convey things are getting easier ! You are right. On reading it again I convey completely the wrong impression.
Hope you are keeping warm and continuing your fantastic efforts towards recovery
Colin

Thank you for your encouraging posts. I do see improvements daily and can look forward to Christmas. Something I could not imagine only a short time ago.

Thank you Colin...safe and warm here, have been housebound due to heavy snow. Went out this morning for blood tests as I have low sodium . On reflection, I think this is probably due to dehydration. I call to mind your wise advice about drinking more water after a stroke. Apparently, as you grow older you stop feeling thirsty and can quickly become dehydrated. Am now consciously drinking more water.

Us seniors get a triple whammy. We don't want to drink partly because we need to then visit the toilet numerous times. Then nature tells us we are not thirsty. Then on top of that our brains need extra liquid to cope with stroke, yet the brain will not let us know !
I must now go, and make a mug of tea.
Colin

Hi Pukkapies5 (great name!!), stroke is awful, takes one person and replaces them with someone similar, as you say.
My hubby's stroke was almost 10 years ago, your post brought back many memories. I spent the first year always on the edge of tears! but after a while this New Life becomes the Normal life.
Guilt & anger? yes, bucket loads. My hubby had a very unhealthy lifestyle, so although the stroke was caused by a medical error it is possible that his lifestyle made it much worse.
I do push my hubby, at first he couldn't do very much, but when he made his first (left handed) solo cup of tea I made the biggest fuss, it was such an achievement!
Things do improve, but it can be a hard and lonely life, listen to the great advice on this forum, take breaks , if only to walk up the road and back, meet friends, and talk talk talk, it really does help, make sure you look after yourself, Sheils x

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