Friday, 29 April 2016

18 Months On

Yes this coming week it will be 18 months since the day that changed our lives.  What a steep learning curve it has been.  There has been times when it all seemed too much and Ron does get very frustrated sometimes but overall I think we are managing well.

In my last post I said I would let you know how we got on doing the Physio ourselves, well the answer is not too well.  We are able to do the exercises but it is the sticking to a routine that I find difficult.  There always seems to be something more pressing, washing to hang out, meal to be prepared, grass to cut, shopping to be done - the list goes on.   I really must get more discipline into my days.  When we have found the time,, Ron is improving.   Still no movement in his hand but there  is still hope.  We have met a couple of people lately who have been as bad as Ron but have got movement back up to 3 years after.   We live in hope.

We have had two weekends away.  The first a RREC trip to near Swansea in Wales when we took the Silver Cloud.   This went well although it rained heavily most of the journey there and we got soaked at the services.  The rest of the weekend it was fine and as usual the Welsh Section had everything organised.   Ron and I were invited to travel with John and Carolyn Smith which was lovely for me as it meant I did not have to do any parking!  Of course there was one problem we forgot Ron's quad stick.  Fortunately we were able to borrow a stick but of course it was a normal stick so Ron was not as good on his feet as he can be but we managed.

Last weekend we went away with Area 33 Jaguar Drivers Club.   This was in Hetherset, near Norwich and we took the S type and of course a much shorter journey.   The weather was very cold and showery but we managed to get out and about.   We went to a Game and Country Fair on Saturday and to Sandringham on Sunday.   There was lots of fun and banter at the dinner table and in the bar and we were really glad we went.

I don't think we will do any longer that 3 or 4 days away as I think this is about long enough for both off us to manage.   We don't have another weekend until August but lots of Sunday lunches and one day outing with the cars.

Ron continues to become more independent and I am now able to go out for the day and Ron encourages me to get out and about so I am gradually resuming my social life.

I think that more or less bring us up to date, looking forward now to some warmer weather.  The African marigolds that Ron planted are all doing well in the greenhouse and our begonias are beginning to sprout.

I will write again in a month or sooner if there is anything to report.

Friday, 18 March 2016

Time flies when you are having fun!

I can't believe it is a month since my last post.  Not much has happened in that time.

After a few assessments with Suzanne Ron has been out driving a few times.  He is fine but says he does not enjoy it as he used to, he says he needs to concentrate all the time.  However it is good to know he can do it if he wants to.

We had our last OT session on Wednesday and we now have no professional involvement at all.  We have drawn up a schedule so that we have a framework to work to so we don't just sit around but continue to do the Physio ourselves.

I hope that Ron will continue to make progress.  I am a bit concerned about his walking pace I am sure he used to walk a lot faster but his comment is that there is no rush and that he would rather be slow and safe which obviously makes sense but if he would go just a little faster he would not draw so much attention.

We are busy filling in our diary with car club outings on Sunday's through the year plus several weekends away.   I am gradually returning to my club activities as Ron is OK to be left home alone and he is adamant that I resume these.

I will write more and let you know how we get on with our regime.

Monday, 15 February 2016

Busy times

Well I see it is a month since I last wrote something so here goes with a catch-up.  After the excitement of seeing Ron's thumb moving it turns out that it was an automatic movement and not one that Ron did.   However since then he has moved it under his control just a few days ago.
We have been so busy as we have had visits from the Papworth team, Physio once a week, OT twice a week plus Saffron Walden Gym twice a week.  In addition the Neuro psychologist has been and spent three hours assessing Ron.  We were delighted with the results which she gave us verbally on the day.  Basically she assessed Ron as almost normal for someone of his age.  She said that he needs time and/or repitition to absorb information and she is going to send us a written report together with suggested strategies to put in place such as repeating information such as appointments.   Best of all she could see no reason why Ron could not drive our converted Jaguar.  She said some people in this situation would take some driving lessons to gain confidence and since her visit Ron's daughter who is a qualified driving instructor has been out with him twice.  He got on well, just needs to get used to the controls.

Ron continues to progress regarding becoming more independent with personal care, toilet and washing.   He now walks in the house, rather than use his electric wheelchair, he sits at the table, pulling the chair in himself.

On Sat 14th we had the last visit from the Papworth Physio and she did all the measurements and tests again to compare with those she did when she started.  Ron's original score was 32 out of 54 and he was 49 on Saturday so a huge improvement and his test walk outside had gone from 16 mins to 11 so again very satisfying.

We are so grateful for this extra help we have had from Papworth Trust.  The OT's last session will be around 3rd March and our Saffron Walden Physio finishes on 1st March and then we will be on our own.   I think this is going to be a bit of a let down so we have to make sure that we organise ourselves as it is all too easy to get lazy.   I will set up a spreadsheet and hope that this will motivate us.  
The Physio is going to recommend another session and this will be great if we can get it.   If not we have the option of paying privately we will just have to see how it goes.

We have been out for various lunches with the car clubs, Ron is able to walk in, albeit slowly, and this makes it a lot easier.
On Wednesday 10th I went out all day and Ron managed perfectly well.  I can go out for a few hours without any problems or preparation.

I will write again when there is something to report.

Tuesday, 12 January 2016

Quick Update

I have to write this quick post as something wonderful has happened. Yesterday Ron moved his thumb.   Now this doesn't sound much but it is momentous.  He has not been able to repeat it but we know from experience that he will in the future.  It was the same with his feet and legs, he did something for the first time and then could not repeat it but he now does those movements almost without thinking.

The Papworth Physio came last Saturday and she was very good, Ron went for a walk outside, lots of different surfaces and slopes.   He did squats and is continuing to practice these.  On the advice of the physio we resumed using the mirror box on Sunday (could this have prompted the thumb movement?)

As I said just a short note - off to the gym in half-hour.

Wednesday, 6 January 2016

Welcome 2016

We had a lovely Christmas.  Suzanne made a wonderful meal and 9 of us sat down at the beautifully laid table prepared by Chas with the help of a tape measure.   23 (I think) of us gathered at Graham and Erica's lovely home on Boxing Day to enjoy delicious food , supplied mainly by guests, loud music and some rowdy party games.

Between Christmas and New Year we went to Ryan's house.  Ron entered by the back door but on leaving he used the front door which requires you to bend low under the beam and step up.  So another achievement.

Our trip to Llangollen, North Wales started out by us leaving home at 10.30 ish on 30th, we stopped for lunch and a comfort break at around 12.15 on the A14 and soon after leaving the Little Chef traffic came to a standstill and there we sat for 2 hours!   We set off traffic moving slowly and by now it was beginning to get dark as it was a dull, rainy day.  Disaster struck the driver side windscreen wiper broke away, I pulled in at a lay-by and following Ron's instructions managed to push it back on.  Ron said it had never been satisfactory since he had it replaced.  We set off again and reached the M6 using the wiper only manually and intermittently.  Then it came off again and I could hardly see it was now completely dark and heavy rain all I could see were red lights again and no way of knowing if they are rear lights or stoplight .  We stopped again a couple of times to push it back on.  All in all a nightmare journey- all those intersections and you can't see the road markings.  We eventually arrived at out hotel at 7.15!!!!  Quick change in our very nice room and then down to dinner.

We had a very nice New Year Break enjoying the company of our friends and our return journey was completely trouble free.

Our friend Ted Kelly took us to Wrexham to buy a part and then fixed it for us.  According to a mechanic staying at the hotel, the one fitted on the car was not the correct one for the car.

I do feel quite proud of myself as I think I managed quite well.

We have the Physio from Papworth coming on Saurday and we heard today that we are booked in to Saffron Walden for another 8 week session (twice a week).  Ron has been able to improve the movement he has on his arm from elbow and this may be due to the exercises he has been doing since theOT came to visit.   He continues to practice his staggering without a stick but we had a bad freezing incident on the slope to the dining room this week, I am hoping the Neuro Psychologist will sort this out for him.

Ron has not yet driven using his conversion and I am not encouraging it.  I hope again the psychologist will be able to reassure me.

Must get on lots to do today.

Thursday, 24 December 2015

Happy Christmas

Well here we are Christmas Eve and what a difference a year makes.  This time last year we were worrying about getting Ron home for the day on Christmas Day and Boxing Day and sorting out taxis at extortionate rates.   This year we are going to Suzanne's for  Christmas Day and then to Graham's on Boxing Day for the big bash.  I am missing the usual planning panic.  We wont be having our traditional Christmas Eve surprise dinner out this year but instead I plan to visit Tesco around 5.30 to see if there are any last minute bargains and then to the local chippie for fish and chips!.

We have had visits from an assessor from Papworth's and also a physio and an OT both qualified for neuro.  I have heard from the neurological psychologist that they will be in touch in the new year - this is all wonderful news.   We are already practicing some of the arm moves suggested by the OT.  Ron continues to practice his walking and he did quite a bit at the gym on Friday (stick free).

We are planning to go to LLangollen North Wales for New Year, joining Ted and Pat Kelly and Norma and Gary Byrne.  Just hoping the weather holds out.  We are booked in for three nights and should have a disabled access room.

Since I last wrote we have taken the family out to a Thai Restaurant as a thank you for all the help we have had and continue to have.   Unfortunately Suzanne and Chas were not able to come as Suzanne was not well but we will take them out separately.  Other than that and a visit to Jaguar Drivers Club Night we have not done anything too much apart from some family visits but I think we are fine.   I will let you know how things go over the holiday period.

Tuesday, 24 November 2015

NEC and more

The visit to NEC was good in some ways but horrible in other ways.   No problem with parking when we arrived as we were able to park in one of the car parks set aside for disabled and as it was only 7 minutes walk to the centre and it was dry so we walked to the  exhibition Hall.  At least I walked and Ron rode on his scooter.   We went straight to JDC stand as I had a very heavy bag of cakes which I had made for them.   They were pleased with these.   We were able to sit on the chairs on the stand and lots of people came to see us.   Trying to move about the exhibition was very difficult, it was so crowded and people just don't register the wheelchair user.   When you are able you are able to stop, start and manoeuvre with no problems but it is not that easy for Ron on his scooter.   I tried to walk in front to clear a path but that did not work.  In the end we mainly stayed at the JDC stand although we did manage to get to RREC where we met Rob and Jane Pedlar.  When the time came to leave the show it was drizzling rain so we decided to wait for a dropped kerb bus rather than get wet going back to the car park.   This was a mistake because although Ron was able to drive on OK when it was time to get off he had great difficulty turning round bearing in mind that the bus was crowded with people.  Of course eventually we were able to get off and we set off for the Premier Inn.   I was so pleased that I had booked this as I was exhausted.  We found our room and decided to go and have our meal in the adjoining Beefeater straight away about 5.30.  We had a nice meal and returned to our room intending to sit and read.   I laid on the bed to read and the next thing I  knew it was morning.  Ron had managed to get himself undressed and into bed on his own.

At the gym Ron has been walking in the parallel bars without holding on and last Friday he was able to walk outside the bars without holding.   Since the he has walked alongside the countertop at Graham's and also at Andrea's and then to top it all he walked 6 or 7 steps in the middle of the room so great progress.  When we left he stood alone and shook hands with Vince.   It really feels we are getting somewhere.

Our lovely community OT Alison has referred us to   Papworth Trust for some intensive neuro rehab and Ron has been assessed and the assessor is going to recommend a neuro physio to come to the house, a neuro OT to work on Ron's hand and arms and a neuro psychologist to address cognitive issues.   We have been told this may take some time to arrange but it is brilliant news.

More news soon.