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Steve's Hour of Need
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Author:  huhpapa [ Sat Jun 28, 2014 2:57 pm ]
Post subject:  Steve's Hour of Need
Hi Steve, will keep you and Chris in my prayers.
Author:  SteveHopwood [ Sat Jun 28, 2014 6:40 pm ]
Post subject:  Steve's Hour of Need
Thanks again guys. Time for an update.

Chris is out of hospital and out of danger. She will come home as soon as social services can find an agency to provide the care package she needs. I physically cannot do everything for her that she needs; any attempt to do so would land us both in hospital, with it being a race to see whom would be the first.

There is a problem with finding an agency to put together the care package as it needs two carers to visit at least 4 times a day, and one of them needs medical knowledge to administer appropriate drugs - Ketamine being the pain killer to give you an idea of the drugs she is taking. We live right at the extreme end of a large local authority, so finding an agency to send carers out here is proving difficult. Chris will come home; it is just a matter of when.

In the meantime, she is receiving what is called 'interim care' in a residential nursing home 10 miles up the road. Driving is easy round here, so the trip takes 15 minutes - a vast saving in time and distance over trips to the hospital. I spend 3-4 hours daily with her. This is a huge chunk out of my day and I cannot work during this time because the home has not wi fi for me to connect the lappy to. I tend to get up earlier than before and work later into the evening to make up for this.

Chris has sever spasticity in both legs and right hand. I do daily stretching exercises with her and the spasticity is slowly reducing; she also takes Baclofen to reduce this. I am also shoveling vitamin B12 into her as though it is going out of fashion - slight exaggeration but I give her plenty. Gary tells me that lack of this is implicated in MS type symptoms.

Tommaso has been fantastic through all this and encourages me daily that Chris will make a substantial recovery, so I keep doing what I do in the hope that Chris can come home soon and will be able to enjoy a decent quality of life for the time she has left - and that could be a fair few years, it seems.

So, thanks again for all your care and concern guys. I have been deeply touched throughout.

:xm:
Author:  Dewey McG [ Sun Jun 29, 2014 3:35 pm ]
Post subject:  Steve's Hour of Need
I just noticed this thread for the first time. You and your wife will be in my prayers.
Author:  SpiderX [ Sun Jun 29, 2014 4:26 pm ]
Post subject:  Steve's Hour of Need
Stay strong Steve.
Glad that the situation is turning for the better.

Cheers
Author:  SteveHopwood [ Mon Jul 28, 2014 8:50 pm ]
Post subject:  Steve's Hour of Need
Ehup guys. Several people have asked me today how Chris is doing, so here is a progress report.

Chris has made fantastic progress, a lot of it within the last week. To emphasise how far she has come, here is where she was when she first entered Interim Care in the residential nursing home two months ago:
  • immobile and totally dependent on others to move her, and required turning every two hours to avoid catastrophic bed sores. Legs totally seized by spasticity.
  • right hand stuck in a permanent claw and next to useless.
  • short term memory shot to blazes. Couldn't even operate a tv remote even after being shown many times. No interest in anything - tv was merely providing a sound background. You would have taken her as someone in an advanced stage of dementia - could not hold a conversation for more than a couple of minutes.
Fast forward a couple of months.

Chris is sat brightly in bed, able to discuss anything and everything, her forensic intellect apparently restored. She still experiences occasional confusion about recent events but this is improving. I arrived by her bedside at about 3.30 pm and she not only told me about the health visitor she had received this morning (before, the events of the morning would have been a blank) but also told me her name - accurately as I subsequently verified.

I bought Chris a cell phone for her 60th on 5th July. Didn't matter how often I showed her how to use it, she had forgotten by the following day. Now, she answers when I call her on it, so long as it is within reach.

Chris loves her Kindle; I bought it for her 59th and she read voraciously until just before her collapse. As recently as a couple of weeks ago she had no idea what it was, and when she happened upon it on her bedside table usually tried to operate the tv, or the bed, or buzz for a nurse with it. She rediscovered it a few days ago and has been reading voraciously again ever since. She even worked out how to play the audio books I installed on it when she collapsed, in the hope that I would be able to leave it playing to her.

I have been doing the relaxation exercises the MS nurse showed me to help relieve the spasticity in Chris's legs. Once I have done some initial exercises with her to relieve some of the tension that develops in her leg muscles through inactivity, Chris is able to turn herself in bed. This is massive because it lessens the danger of tissue break down ('bed sores') dramatically. Once she is home and I can do these exercises with her every hour or so then maybe we can look at restoring some muscle strength and perhaps, eventually, some mobility. Tommaso encourages me all the time that this is possible and I derive huge strength from this.

Her right hand now has some limited movement and is no longer a claw. She can use it to help support, for example, changing the position of a glass in her left hand, or grabbing the bed rail to help change position in the bed.

So, Chris now has a quality of life I would not have believed was possible even a few weeks ago. Back in the dark days when she had more drips stuck into her than I ever imagined it was possible to stick into a human body, I saw no hope for the future at all.

So, remember this guys during your dark days. It turns out there is always hope, after all. Yes, this hope will sometimes turn out to be false. No, I have no idea where our journey will lead Chris and I. The one thing I have learned above all else is this; there is always hope and the body will fight mightily to reward that hope. Especially when backed by the UK NHS at its very best.

We still await an agency able to provide the level of care Chris will need to come home safely, but even this level of care is changing by the day. Thing is, she will come home eventually.

:xm:
Author:  fxozgirl [ Mon Jul 28, 2014 8:57 pm ]
Post subject:  Steve's Hour of Need
Steve, so good to hear of the wonderful progress Chris is making :clap:

I hope that she continues to progress to the point where you can bring her home and enjoy a somewhat more 'normal' life together.
My best wishes go to both Chris for her continued recovery and also to you to stay strong :smile:

Kind Regards
Shelley
Author:  bazze [ Mon Jul 28, 2014 9:10 pm ]
Post subject:  Steve's Hour of Need
Great to hear,Steve...Wishing you and your dear Chris all the best for the future :) Sometimes the tunnel can seems very long,but in the end of it there always will be light...
Author:  Jemook [ Tue Jul 29, 2014 2:53 am ]
Post subject:  Steve's Hour of Need
AMAZING news Steve.. So happy to finally hear some good news. Hope it's only upwards from here :)
Author:  Eamonn [ Tue Jul 29, 2014 7:45 am ]
Post subject:  Steve's Hour of Need
Steve,

I've had to turn the Tv and radio off recently with all that's going on in the world,it's really nice to hear some good news for a change.

Eamonn.
Author:  SpiderX [ Wed Jul 30, 2014 2:58 pm ]
Post subject:  Steve's Hour of Need
Hi Steve,

Glad that things are looking up for you.
Hope they only get better from here.

Cheers
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