3 Years on

Aphasia and communication
1

My husband had one massive stroke 3 years ago, which left him with aphasia. He is improving every day but communication still remains very difficult for him. Physically he has recovered fantastically, apart from a few balance issues, particularly with stairs. But he does his 10000 steps a day with ease. He is 68. Before the stroke he was fit and healthy, leading a sensible lifestyle. We never got to the bottom of the cause of his stroke.

However, every couple of months he has a day when he says he feels dreadful (not pain) and could easily sleep for 24 hours. The Doctors aren't interested. Has anyone else experienced these symptoms? Obviously with his aphasia it is very difficult for him to describe how he is feeling. 

2

Dear Windmill

I had just turned 69 when the stroke got me. I was fit and not over weight. And very relaxed enjoying retirement. 

I was just unlucky, a clot got in to my system and the unlilekly location was my brain. I always had a strong heart so it pushed the clot through. Nevertheless my survival was no more than a chance.

I view that my past life finished on the day the stroke got me. And my new life started.

Aphasia was one of my problems. But that has been largely overcome without me doing much at all. I noted that last Sunday I could sing all five hymns. Not been able to do that before. I am 44 months post stroke.

Overall, things get slightly better each week. So slight it is hard to notice.

I keep my BP under close watch. I make a huge effort to get 7.5 hrs sleep. I let my brain rest when it tells me to. And i hydrate (yuk). Up until a few months ago, I had some dreadful days. I very rarely go to bed in the day, I will sit and rest. But yes they were disaster days. I try to look more at the better days.

I cant recover my mobility to do 10,000 steps. I often have to limit activity to 45 minutes then a 45 minute break.

Can he manage a stroke diary. Just a note of what is done each day and how hefelt. I use muy own version of very high/high/medium/low. Ht and miss, but I can opick up on when I get a bad day and its usually lack of sleep.

I go to monthly group relax, which is good. I recently started weekly group yoga, for the disabled etc. Thats wonderful.

Stroke groups are good.

Tings do improve.

I smile a lot. I am positive. Your hubby and me were chosen to live when many do not. We are special. 

The NHS can not handle our recovery period. Its down to us.

Nice to have a new one on here and someone in my age group !

Best wishes

and please say hello to hubby from me.

Colin

3

All I can add to what Colin says, relates to your husband’s post stroke fatigue. We all get it and with some of us it does not go away. Mine hits every day by noon and requires an hour’s bed rest. I also get bad days, usually after I do too much or encounter too much stimulus. I then feel shattered and feel I could sleep for hours. However, I restrict rest to an hour and try not to go into a deep sleep.

Hope this helps.

4

Hello to all you youngsters!!

Windmill, There is a massive amount about stroke that Doctors cannot understand, one is the tremendous differences we all have by how it hits us. You just have to make up your own mind on what to do about recovery. If your brain says it wants to sleep for 24 hours then I'd say just go with it and sleep.

I'm in my fifth year of recovery and most of the time I know what to expect of a day but every now and then fate steps in and changes the rules! Recently I have had unexpected bladder control problems and just had to make new rules to cope with it.

My regards to the victim.

Deigh

5

Well said Deigh.

Colin

6

I seem to have got a bit confused as to whether I was talking too a victim or their carer. Never mind, I'm sure they will get the hang of my reply!

Deigh

7

We are Stroke survivors!

8

Dear Colin, 

i have just joined this group and your responses on here are inspirational for me, my partner had a very severe stroke last March he is only 53 and has only just been discharged from hospital. He is able to walk a little now but not too far but right arm complete paralysis and complete aphasia which is heartbreaking to watch , he had a very active full life and job prior to the stroke and I just wondered if you had any advice. Many thanks