From the forum: Have you recovered fully yet?

I’m hoping my experiences to date may provide some hope to you and to others who unfortunately have just experienced a stroke or, in fact, any stroke survivor here.

“Have you recovered fully yet?” A question asked by a friend who hadn’t seen me for a while but knew I had a stroke recently.

How do you answer that?

From reading the stories on this forum, it may take a long time. But I thought I would try and spread some hope amongst other sufferers to show that there can be light at the end of the tunnel. Even if that tunnel may be long!

I had my stroke in August last year

Caused by a blood clot and off the scale BP. I woke up and just fell out of bed as I lost all control down my left-hand side: arm, hand and leg.

My two main passions up until the morning of the stroke were daily running and playing keyboards in my band. Both seemed to be off limits as I lay there in the hospital bed wondering what had just happened to me.

I had 2 weeks in hospital whilst the doctors tried to lower my blood pressure and get me to walk even a few steps with a frame. They finally let me out and I was lucky to be handed over to a rehab team that do home visits to help with my exercises etc. Invaluable.

First 2-3 weeks I used a 4-pronged stick to walk around the block (50 yards), then graduated to being arm-held by my wife for another 3-4 weeks. But eventually went solo with a single walking stick for a very tiring 100 yards.

Bit by bit I built up the length of time I could last without a stick and falling over and now can do about 2 miles which takes me 45 minutes. I need to sit down afterwards for a good 15-20 minutes and am very wobbly though.

Before my stroke, I ran every day and ran 5k park runs every Saturday. I did have the aim of being the fastest in my age group (over 65s) in the park runs. But it may take me a long while before I get back to those!!

I am just pleased I can walk, although still ungainly. However, I still can’t walk in a straight line, or run without clipping the ground, or hold my left arm straight up.

With regards to my arm and hand

An early achievement after 4 weeks or so at home, was being able to cut my food up. Initially I couldn’t raise my left arm above 90 degrees – it’s now up to 170 or so – not straight yet. So further improvement needed there.

But after lots of exercise with the rehab team (plasticene was a good one, to stretch out my fingers individually) and my own exercises I thought up myself on my keyboard to re-train my brain, I can now play again to an extent. Enough so that my band mates don’t worry about what I’m playing.

However, the dreaded fatigue kicks in quickly, as I am concentrating so much on getting my fingers to play the right notes (at the right time!) – it really takes it out of me. My brain hurts! So much so, I have agreed with the band that if we have gigs with 3 sets, I will drop out of the 3rd. And any songs that really need me to concentrate, we put them early on in the set.

I can’t manage the PA yet (either lifting or car loading) – it’s too heavy and cumbersome and I find I can’t walk and carry (I would trip up!) – so someone else will be taking over that task in the band (I have been doing that for over 20 years). But at least I am playing.

Driving

It took me several weeks before I ventured out in the car to drive. I had lost all my confidence and was worried I couldn’t handle the gear stick (left arm!) or react quick enough in situations.

I eventually got the green light from my GP and the local Rehab unit conducted tests on me to determine if my alertness levels and ability to do two things at once were not impaired.

They used something called the Rookwood Driving Test. A series of timed tests/pictures/ exercises to check you out. It was sort of fun but only because I seemed to be performing OK.

I think was 3 months before I drove with my wife alongside and 4-5 months by myself and still only do maximum 30 minutes or so. Night driving is still a challenge but I only drive on known routes.

Fatigue

I had to give up work back in February as I couldn’t manage the afternoons without needing a sleep. So I have retired completely.

And I have to plan my day around that sleep, so outings or meeting friends and family have to be timed right. But I am getting better.

It seems I have three causes of fatigue: physical (exercise or just walking), mental (doing stuff on the computer perhaps or playing music) and social (interaction with friends and family). They each can hit me at different times.

Not worked out yet which is worse and which needs more sleep to recover.

Other successes

Some other successes, which I couldn’t manage in the first few months (maybe small, but they are successes!):

• Cutting up my own food.
• Mowing the lawn
• Sorting out the weekly rubbish (3 bins and sacks)
• Cleaning the bathrooms
• Went up the loft ladder for the first time last week
• Walking up stairs holding a cup of tea without spilling (downstairs is more troublesome!)

So, back to the original question: “Have you recovered fully yet?” – No , but I’m getting there!

Good luck everyone and keep positive (it really helps).