Friday, 27 March 2015

Some good news

Yes we are home in our newly converted to wheelchair friendly house.   Thanks to lots of hard work especially by Graham and Ryan who have had to sacrifice a lot of family time.  We are so grateful.  There really is nowhere like your own home.

The other good news is that Ron seems to be recovering from the horrible side effects of the drug that he was taking for his spasms.  They had a horrible effect on him all known side effects- muscle weakness, sleepiness and urinary frequency but it was the muscle weakness which was worse where previously he was walking 15 or 20 yards, after around a week on the  tablets he was no longer able to stand for more than a minute or two so it was back to the rotastand - and backwards is not somewhere we want to go,  Ron had to only take half a tablet 3 times a day and the whole tablet was not much bigger that a sweetener such power in drugs!  Unfortunately you cannot stop them straight away, you have to come off them gradually,  Yesterday was the first day with none and today Ron is able to walk again albeit very hesitantly.   For those of you that like to know, Baclofen was the drug.  I don't know what proportion of people are affected like Ron but I am surprised that a stroke doctor would prescribe this.

It was really hard work moving yesterday but I wanted to get it done and dusted.  By the time I got back with the second load (who knew Nissan Micras were removal vans) I was exhausted and never more pleased to see Michelle's car parked on the drive.

Another little niggle we have no sound on the TV, it was OK yesterday but Ron watched a video and had control of the buttons so who knows what he pressed but we spent hours trying to get it to work and Ryan did also with no luck - Formula 1 this weekend !!!

Next physio session on Monday - hope Ron is back to where he was before this set back.

Friday, 20 March 2015

Happenings this week.

At last we had our assessment with the NeuroPhysio.  We went to Herts and Essex Gym on Tuesday and met with Marion Henthorn. We spent nearly two hours with her but a good deal of time was used up wth taking history and filling in the forms on line but when she did work with Ron she certainly knew her business and was really challenging for Ron,taking him out of his comfort zone.   She explained that the physio that makes the difference is what you practice at home between visits and she will give exercises to do during the week.  Only one visit a week and unfortunately she is on holiday next week so we have to wait until 30th for the next session.   I phoned the private physio but her advice is that what Marion told us is correct and we should take what we can from the NHS and call on her services when they have finished with us.

On Wednesday we met with Glen Grinrod a RR mechanic who is going to rebuild the engine of our Silver Cloud that Ron dismantled to do the valves.  This engine has been in bits for two years and Ron had hoped to work on it over the winter but it was not meant to be.

In the evening we had a visit from Suzanne and Elliot.

Due to all this activity Ron has been very tired for two days.  When he gets tired like this he cannot use his bad leg so consequently we have not been able to practice the exercises the physio gave us - frustrating.

The wetroom is complete but I have not seen it yet, I am going to go tomorrow and start the big clean up, I have offers of help from Andrea and Michelle.  We are promised a replacement stairlift next Wednesday - fingers crossed that it will do the job.

Saturday, 14 March 2015

A few minutes spare

Not much to report on progress for Ron.  The past few days have been sleepy days.  Last weekend Ron was presented with his trophy which would have been presented at The Classic Car Show at the NEC.  Brian and Joan Ekin from JDC called in on their way home from the wedding celebrations of Len and Gaynor.  The cut glass trophy is very beautiful at least it does not need polishing.

We had a big disappointment this week as the stairlift which was fitted on Tuesday was unsuitable for Ron as his legs were hitting the bannisters - he is too long from hip to knee.  We are now waiting for the lift people to source some more turns and they are going to try fitting it on the bannister side (this way we gain the width of the skirting even with this it will be touch and go, keep your fingers crossed for us.

We booked the S type Jaguar in for a MOT on Thursday, got to Burton End and the battery was flat!  Phoned and cancelled MOT, Went to Stortford and bought a new battery, phoned Ryan who was fortunately working locally and he came and fitted the new battery (very heavy).  Phoned MOT station and they agreed to do the MOT at 1.00 pm.   I got on well driving the Jag and Ron is able to get in and out so we will be able to go to Wales in that - still not 100% sure if we are going to go but I am beginning to hope that we do go.

17th March is a big day for us - bathroom fittings are arriving between 7 and 11 and we have our first appontment with the Neuro physios for an assessment at 11.00 hopefully they are going to be able to offer some intensive physio.  I do now have a phone number for a private physio who comes well recommended.  Our lovely Jenna who has been such a help to Ron did her last session last week it is only due to her work that Ron has made the progress that he has.

All being well we will be well on our  way to returning home.

Thursday, 5 March 2015

Latest news

I have not written for a few days so just a catch up. No big things to report. It's the usual story with Ron, he makes giant strides forward (not literally you understand) and then relapses.  It must be so frustrating for him, it certainly is for me.  Last weekend he did a really long walk round the ground floor here - about 20 yards or so, really confident steps, that was Sunday and then so far this week his legs have been really weak and he finds it difficult to stand.  People keep telling me it is early days and I know this is true and he has made very good progress but....

Ron has been getting a lot of spasms during the night they are a bit like cramp and we told the stroke consultant about them who said they are quite common.   I read up about them on the American Stroke Association website where it said that you should have daily physio to avoid getting them !!!
We had a good visit to the stoke doctor who answered all our questions and explained that on that day Ron did not have Atrial Fibrillation but that the medication he is on will prevent any side effects if or when it re-occurs.

Last Sunday my daughter Lorraine and son-in-law Chris took us to the pictures and then out for a meal.  We saw The Second Best Marigold Hotel we both enjoyed it and then paid our first visit to a disabled toilet - another experience under our belt.  We ate at Frankie and Benny's three of us enjoyed our meal but Ron's fish was dry and horrible so they did not charge for it.

On Monday we went shopping for comfy shoes for Ron.  Because his left foot is so swollen his shoes were causing him a lot of pain although they were velcro fastenings.  However he is now sorted and is no longer in pain.  We also bought him a short warm coat.  We had lunch in The Harvey Centre.

We had booked for a weekend in Wales before Ron had his stroke and I have not cancelled it.  I phoned the hotel to change our room to a disabled one but they are all booked.  They have changed us from 3rd floor to ground but I am not sure that Ron will be able to manage the toilet in a normal room ((ie no grab rails).  I have left the booking in place until the last minute in the hope there might be a cancellation or Ron might make improvements in his ability to squat.  He used to be really good at this but seems to have lost the skill.   Of course, if we do go, there will be the question of which car we will take.  I would be happiest in my Micra but Ron will fight this.  I don't think he will be able to get out of the Jaguar and the Shadow brakes are not working.  I have never driven the Mark 10 and would not feel confident on a long trip to Wales for my first outing - so watch this space.

I am off out this evening to History Society I am down to do the teas.

Monday, 23 February 2015

Our Busy Life

We have been going out and about quite a lot lately various shops to look at shower panels, a visit to our friends Barbara and Tony, a social visit to Andrea and Vince (including dinner) and a trip to Burton End to try out the new access via ramps.  It is good that we are now able to get in and out  of my car so we have our independence back.  The Financial Adviser came on Thursday to do our Financial Assessment which we had both been dreading, not that we have anything to hide just that we are both of a certain age and we don't like other people nosing around our bank statements - anyway the good news is that as we are not intending to have any further care, we do not have to have an Assessment and the really good news is that the care we have had so far comes courtesy of ECC or NHS and we don't have to pay.  (This is not what I was told by the Hospital Social Worker who told me we would definitely have to pay).  So cheers all round.

We have had a really busy weekend, Ryan and Michelle came Friday, on Saturday we joined our friends from the North West, Ted and Pat Kelly and Carolyn and John Smith, who came all the way to spend an evening with us.  They stayed at a local Hotel and we joined them for dinner and it was wonderful to enjoy their company and special sense of humour.  On Sunday Jenna, the physio came - more later - and in the afternoon Suzanne, Chas and Sheila came.

Here is a picture of our new Rise and Recline Chair together with Ron's Walking Aid


and here is the really wonderful news,  when Jenna came on Saturday, Ron walked  11 1/2 metres ( two 5 metres and one 7 1/2 metre lengths) using the walking stock pictured and what is more today he walked 15 metres (two 7 1/2 metre lengths).  Not yet up to turning round hence the various lengths.    This is such a momentous turning point for us and we are both thrilled.

Not sure if there is any connection but Sunday Night Ron had a really good night's sleep and woke without any back pain.

Tomorrow MOT in the morning and a visit from a friend in the afternoon, Wednesday is our six week follow up with the stroke consultant so it looks like another busy week.

Bye for now

Saturday, 14 February 2015

Out and about

Well I have had my day out.  I did enjoy the day but must admit I was a bit on edge especially when I had phoned the care company the day before to confirm that they were coming, the girl I spoke to was not sure and promised to phone me back before close of play but I did not hear anything (I found out later she had left the message on our home phone).  Although Ron had reassured me countless times that he would be OK he did not pass water all day - a psychological block?

On Thursday we bit the bullet and set off in my car to visit B & Q, Bathstore,tile shop and carpet shop (for carpet tiles for the ramps).  All went well in and out of the car with ease, wheelchair pushing the jury is still out!  We have chosen a toilet and basin, failed miserably with the tiles but we brought home the carpet tiles.  It seems that every few years, tile manufacturers change the size of tiles which means that your tiles are 'dated"  We are now looking at shower panels but they do work out quite expensive.  More research required.    We sat in the car and had a MacDonald's picnic.

We have finally got a date for the neurological physiotherapy assessment 17th March - 10 weeks after discharge from hospital - disgusting.

Ron had a physio session with Jenna today and was very disappointed with his performance we now have a different set of exercises to practice to strengthen the leg.  Overall Jenna is very pleased with Ron's progress, she keeps notes.

We met with the Social Worker on Friday to confirm that we will dispense with all care with effect from 18th which is the end of the 6 weeks arranged by the hospital.  In future if we need care we will have to arrange it privately.

Monday, 9 February 2015

Latest News

Lovely day yesterday Lynda and Nigel came to visit and we went to the local pub for lunch and saw these local equestrians who had stopped  for a pint, a lovely rural scene.  Ron managed to get in and out of the car without any problems.

Herts Wheelchair service have delivered our loan wheelchair and it is certainly easier to push and there are no squeaks and creaks.

A good session with Jenna on Sunday morning - Ron has made so much progress since she has started working with him, we are so grateful goodness know what would have happened if we did not have her.   On Wednesday two research nurses came to do some tests on Ron as he was involved in a blind trial when he first had his stroke, they came all the way from Addenbrookes in a taxi which waited for them.   The positive thing that came out of this visit was that they were very shocked that the neurological physios had not started working with Ron.  She said they would phone and chase the physio when they got back to the hospital which they did and they phoned to tell me that they had done just this but to no avail - the same reply I get, we are on the waiting list but i think the fact that someone from Addenbrookes must have made an impact.

Today Ron and I had a test getting in and out of my car which we managed without any problem.  However driving wheelchairs on slopes is harder than I imagined  and there are obviously going to be a lot of ramps out there, too fast going down and too hard going up - more practice needed!
Overall though this will be freedom for us.

The local doctor came today at my request to check out Ron's swollen foot and leg.  No medication required but she suggested some exercise for Ron to do - just got to keep him awake long enough to do them.

Graham and Ryan  laid the concrete at Burton End on Sunday and Graham finished off the ramps on Saturday so work is going ahead at a fast pace.   Bathroom is all stripped and design agreed.

I think that is all my news