I haven’t been as much help recently as I’d have liked recently. The main help he’s getting is from my brother whose patience I’m sure is tested on a daily basis.
My dad has now become competent enough on the computer to hog it a lot of the day – mum now wants her own computer!
He spends large parts of the day using photo editing software to maniupualate his digital photos – he’s playing a more active role in the local camera club now he can include his photos in club competitions again. He’s also using google and has his own amazon wish list for his birthday.
His aphasia is such that he still cannot write or type easily but he can read mum’s emails (another reason she wants her own computer as she can’t have private discussions/winges anymore)!
Dad has also been given a mobility scooter to get around town in. This sounds better than it is as he’s a bit of a liability as his awareness (and extreme right sided vision) are not what they once were. Mum’s taken out some third-party liability insurance for him in case he runs off the pavement into a car (or someone)!
He gets immense pleasure from his scooter and does small trips to the shop to get groceries. Mum gives him a list and some cash (he can’t use a card) which saves her some time and energy.
The doctors were so wrong when they said in August 2006 that he would improve most at the beginning and possibly bits up to 2 years but after that he’d be done improving.
Over 4.5 years on and he’s still making progress.
Shows what determination / stubborness does for you!
He showed me his latest exercises.
He can now stand for a short-ish period without becoming unstable and at the same time can move his shoulder. He can lift it a bit and roll it forwards and backwards a bit too. The arm/hand still doesn’t do anything but getting his atrophied back/shoulder muscles stronger is a really important step.
Hopefully by not having his shoulder drop so much he can reduce some of the intermittent pain he has in the arm/side that’s still sleeping.
The other thing he can do is that he can bend both his knees quite a bit and then stand up again (repeated 5 times) without losing his balance. This is particularly fantastic progress.
He definitely is one of the slow-recovery patients but after nearly 3 years and 8 months he’s still making visible progress. They said he wouldn’t improve much past 2 years. How wrong they were.
Go Dad! :)
Dad has started to use the internet (mainly google) and is getting things to put on his birthday list (for April)!
Over the past couple of years my brother had to show him how to do things many, many times and Dad still had trouble ‘getting’ it. Dad now only needs to be shown some things once to be able to pick them up (there are still some things that need more support for him to do).
I’m really pleased by his recent progress and am looking forward to hearing more things that he can do independently.
Go Dad ! :)
Dad’s now able to turn on the computer and play solo card games.
3 years ago he couldn’t get his head around using a mouse.
I’m so pleased that his brain is still recovering/rewiring and that he can do things that he couldn’t a couple of years ago.
Well this therapy isn’t being provided by the hospital but mum heard about this and looked into it online. It wasn’t too expensive to buy a mirror box: (can’t say which site she bought one from – may not be this one) and she saw some videos including on youtube – yes my mum uses youtube!
Dad is now using this twice a day and mum has pointed out that if he doesn’t work on keeping his arm exercises up then a good hand won’t be much good with an arm that can’t do anything. He’s now started his arm exercises again as he has a little hope. He stopped doing them nearly 2 years ago.
My brother was very skeptical when this contraption arrived but tried to move his hands independently with one inside the box and the other outside and visible in the mirror and found that he really couldn’t (or so my mum says).
Hopefully this simple device will be of some benefit – only time will tell.
General info about Mirror Box:
Mirror Box Therapy is a treatment used for phantom limb pain, Complex Regional Pain Syndrome (CRPS), for rehabilitation after a stroke, and therapy following a hand or foot injury or surgery.
Mirror therapy was first described by a renowned American based Indian Neurologist Dr.V.S. Ramachandran, Director of the Centre for Brain and Cognition and Professor with the Psychology Department and the Neurosciences Program at the University of California, San Diego.
Mirror box therapy works by utilising the visual input of the mirror image of the good limb to replace that of the missing limb to suppress the “upset” in the somatosensory cortex and thus reduce phantom pain and sensation.
He’s looking good apparently but mum has a lot of catching up to do as his medication list has significantly changed.
He is also having to retrain his bladder (as he was catheterised – this always happens) as it’s easy to get lazy when you’re in hospital and don’t have to hold it in to get to the toilet safely. Poor mum!
At least that is now over and things can start getting a little more back to normal in their house.
He spent 3 days in intensive care after the operation took longer than planned and ended up in a lot of pain. Morphine helped (and also gave him hallucinations of a friendly cat that would visit him and once let him stroke it). He then spent a couple of days in high dependency where he was recovering but really tired.
I visited him yesterday on the general ward and he looked great. He was a good colour, the pain had gone (except when he coughed) and wasn’t tired and had a good conversation for the few hours we were there. He had nearly finished a jigsaw too.
We found out that the faulty heart valve was supplied by a US company that has now changed its name (I wonder why? Avoiding international lawsuits?). It was also really good that he had the op when he did as apparently the valve was just being held on by a single stitch. Oh boy that could have been nasty.
Some good news is that his atrial fibrilation has gone. We speculate that this is because he has a working heart valve now and his heart doesn’t need to fight all the time just to work.
At least this time it’s planned.
He had heart surgery yesterday to replace a faulty replacement heart valve and my mum and brother saw him in intensive care last night. He was in surgery nearly 8 hours and mum would have been in a much worse state if the waiting room didn’t have a TV and Wimbledon tennis to distract her somewhat!
Just hope that he recovers as well as he did last time (November 07) when the heart valve was put in. Can’t believe that it failed as it came from a faulty batch. It’s bad enough to go through this once but twice is unnecessary. I also feel for all those who have also needed their faulty heart valve replacing.
This is not fair – but when has life ever been fair?
After nearly 3 years Dad is able to move his foot a little today for the first time since his stroke.
This is completely unexpected. We’re not expecting miraculous events and for him to be able to walk unaided but all progress is good. I’m not sure whether he can feel the foot or just move it but Mum said that he could flex the foot up and down by a easily visible amount. Mum also said that his foot looks a different shape and colour (no longer looking like a rubbery jelly-like foot the muscles must be starting to work) and has been changing shape for the past couple of weeks or so.
Who would have thought it? Not me.
He has shown a few other signs of progress over the past few months. He has learned to use an old mobile phone – you know the type with few functions and no camera. Last year he could use just the last dialed number now he knows how to search through the address book and even check to see when his battery is running low.
It is a lot of progress considering the doctors said that most progress is made over the first 6 months with some further progress up to two years. Little did they know my Dad ;)
As we thought, dad needs heart surgery to replace his ‘new’ heart valve.
He goes into hospital in just over a couple of weeks as long as there’s a bed available. He recovered really well last time and astounded us all and we hope that as he’s stronger than he was last time he’ll recover well again.