New to coming to terms with stroke

Hello, I am so relieved to have found this forum. it has helped me so much already. My husband is 48 and has just suffered his second stroke now leaving him with loss of peripheral vision. he is disabled following a work accident many years ago so he already has mobility problems and pain issues. the second stroke has completely tipped him over the edge. he is anxious, suffering depression , sleeps all the time, he is distant, talks about not wanting to be alive and fearful that another stroke will leave him completely unable to function and completely dependent on others. it has been enlightening for me to read the stories on here , my husband is only 4 weeks into his 2nd stroke and I was already getting impatient for him to stop sleeping all the time and get back to normal. I feel so ashamed of this approach now; it's just that he was such a positive an active person I am finding it hard to come to terms with the changes that are so apparent. I know we will get through this, i just feel so helpless and guilty for expecting him to get on with life . i am so pleased to have found this forum. even if no one responds to my post I am getting so much positively and understanding from the posts of others - and its feels good to get my thoughts down too . I would be interested in anyone else who had peripheral vision loss and their story . thank you

Hello, lost a bit of peripheral vision and what I didnt lose was all blurred and double vision. I had appts at the eye clinic and, as usual, no one could tell me if or when it would improve (which I fully understand). Coupled with mobilty and left side muscle control and the associated emotional issues it really is a triple whammy. Im now 16 months post stroke and all I can tell you is that the vision side was the best recovery, the vision cleared and I would say its about 85% back to pre stroke. It took time and I didnt see any improvement until about 3 or 4 months, but then a very gradual improvement. I hope this gives you further hope. Things DO improve but its very very slow.

Kasba, I can imagine how depressed he must be and how worrying this must be for you. I am sixteen months in from my stroke and can imagine that I would feel much the same after a second stroke myself. I have realised,however, that after a stroke recovery takes a long time and there is no 'return to normal', only a new life with daily challenges. All you can do is love him and support him as he recovers. Sometimes that might take the form of 'tough love' but he must try to fight his way back, hardthough it is.

Please come on this forum whenever you need to. There is great support and understanding here.

Dear Kazba
I am so sorry to learn of hubbies second stroke, but welcome to the forum.
All the emotions that you list are standard problems for most of us. I have avoided depression out of sheer determination. But the anxiety, sleepiness, thinking it would be better to have died and the "distance thing" are exactly what I went through. Things improve.
You probably know a lot from his first stroke so forgive me stating the obvious.
Part of his brain is damaged. It will not regrow. But the amazing brain will rewire itself along alternative routes and minimize the effects of the damage. In the early days his brain needs rest and hydration. I slept every two hours. I drank extra water despite hating this. Recovery in the first few weeks is often the quickest recovery, but recovery can go on for many months and even many years. He needs to get mental recovery and physical recovery. I didn't realize that and, after a miracle recovery with walking on the third day, ignored the physical side. Mistake. I should have balanced the two. So I hope that he is doing simple movement exercises to recover any limbs etc that aren't working.

I am not a dog lover, but I see a (?)husky. The dog will remain constant and could be a great comfort to him.
I kept and still keep a stroke diary. I can look back then realize how far I have come. That is a positive.
My mantra is smile, be positive you are not alone. Do try to get hubby on those rails. The smiling thing is so simple but so very effective.

I have to admit I have not come across second strokes in this way. That shocks me. We all have an irrational fear of a second stroke but most of us don't get the second one.
Please also look at your own situation. He needs you. But he needs a fit and well wife. So think about how you keep well. My local stroke association has sessions for carers. I was aware of the need and so I insisted my wife had two hours every day to herself. Shopping, coffee mornings etc. Just a couple of hours away from me. And it has an additional benefit that I am learning to cope on my own.

Do ask anything. Usually several of us "further down the recovery trail" are likely to read your words.
Best wishes
Colin

Kazba, I am two and a half years into my stroke and although I have got used to the fatigue side it irritates me intently to have to waste time sleeping when there are so many things I would like to be doing. My wife is the best supporter one could ever have but I am pleased that she keeps up with a private life of friends so I don't become too much of a burden.
Deigh

Hi Kazba33,

I have had only one stroke - but your story rings so true after it. I was bewildered, constantly tired, massively depressed and lost the va-va-voom I'd had before in life.- after it I lost a quarter of my my vision. The DVLA took my licence off me. After my last vision test, six years post-stroke, I had 93% vision. In those six years the DVLA have relaxed their rules about visual field loss but they are still difficult to deal with - the onus is on me to prove I have improved before they will even entertain my reapplication. The medical professionals simply said nothing could be done and discharged me immediately. Opthalmology is under chronic pressures in the NHS, so they literally just give up on you.

Cutting a long story short, it has got massively better over time. My distance vision is good and I hardly notice i have visual issues. I work full time now, my stroke fatigue has diminished so much that I can cope with four hours of commuting per day and a ten hour working day at times. I have to pace myself but I catch up on sleep at the weekend. As others will say, drinking plenty of fluids and having a good routine helps. My mother had a stroke at 62, nine years ago - she sleeps 19 hours a day, every day, now and seems stuck in that rut .

For you, it must be hard - you can't give someone the motivation to get back on track, they have to find it themself.

My depression improved through two things:

1. Antidepressants - these aren't a wonder cure but help balance out your thinking. I'm on a hamster-sized dose and can stop at any time according to my Doctor.
2. Cognitive Behavioural Therapy - taking ownership of your thinking and recognising when it is going off track. Ask his GP about it. It is by far the best solution to depression and warped thinking after stroke. There's a free online resource called the mood gym - google it and ask your husband to try it.

Exercise helps massively - going to the gym three or four times a week really helps.

Others will say try Yoga but doing a combination of things for years has worked best for me. Time, Patience and Nature are the three great healers, they say, and it is true.

I wish you both only success with this,

Damian (eurocracy)

thank you all so much for your reply's . they are all most informative and and have helped so much. we are making good progress towards our "new normal" . I have to say this forum has been more help and given me and Lee more positivity, and information than any of our many medical appointments. I now totally get that time and patience is vital. we can now also give some more information to our extended family who just didn't understand why the medical profession wern't "doing something" to make him well again ! I will keep in touch on here and I hope that one day I can offer the same reassuring and comforting advice to someone who is feeling a bewildered and upset as I was . thank you all soo much again - Karen x

Thanks huntspete, we were under the impression that if the vision didn't return with a few days it would be lost forever - it's great to hear to that your vision has improved after such a long time. I do hope you continue to recover - thanks again Kx

thanks John , we are busy now finding our new normal. your reply was very helpful and supportive . I will be back ! K

Thanks Colin - Tough love is my specialty ! - being on here as really helped me with understanding and confirmed what Lee is always saying to me that he needs time to recover and at some time he will need to cope being alone. the dog - we have two beautiful Alaskan Malamutes , yes they are great comfort and also give him a good routine every day - feeding and grooming them . I will be back thanks again K

Pages

Category

Share

Charity information

Stroke Association is a Company Limited by Guarantee, registered in England and Wales (No 61274). Registered office: Stroke Association House, 240 City Road, London EC1V 2PR.

Registered as a Charity in England and Wales (No 211015) and in Scotland (SC037789). Also registered in Northern Ireland (XT33805), Isle of Man (No 945) Jersey (NPO 369).