Sunday, 24 May 2015

Progress

Ron has made lots of progress this week.  On Tuesday the physio and OT came and enouraged Ron to walk from the chair lift to the bed and back again.  Since then he has not used the wheelchair to and from the bedroom.  In addition on Wednesday he walked to the bathroom and back to the chair lift,  this is really difficult for him and he has to overcome his fear of the stairs, it takes him ages to get through the doorway but he refuses to give in.  He really is so brave.   He has done this every day.   The physio will be amazed.

We went to Lorraine's last week and Ron managed the transfer from car to living room.  He did really well.   It has given us confidence to visit others.

The scooter has arrived and we used it for the first time yesterday when we went to visit Andrea.  We need more practice especially me but I think it will be fine in the end.

We have been busy in the garden 19 troughs have been planted up with african marigolds these line the wall that borders the drive up to the garage.  Three baskets planted up with million bells and begonias (saved from last year)
 
  

Sunday, 17 May 2015

Catch up

It has been pointed out to me that I have not written anything lately so here goes.

There are no big breakthroughs to report (worse luck) but lots of little improvements for which we are very grateful.  Ron can now get into bed and out of bed on his own and since last Tuesday he now gets onto the stairlift on his own - it takes ages and I can hardly bear to watch so I go off and do something else as it is important that he does anything he can however difficult.

For the last two Tuesdays we have been lucky enough to have our physio Marion and Debbie an OT come to our house.  The reason for this is that the planned Group Sessions have had to be cancelled due to Norovirus at Herts and Essex Hospital.  This past Tuesday they tried to get Ron to walk into the bathroom from the stairlift.   He managed the walk in very well but had a very difficult time coming back to the stairlift.  He was too worried about the stairs on his right hand and just froze.  Consequently this put him back.  He did manage to walk from the door to the bed on Tuesday and Wednesday but by Thursday he had lost all confidence.  The OT admitted that the bathroom walk was a step too far and they perhaps should have started off with a less challenging task.  

For a short while we were lucky enough to have the Community OT - Ellie or Allie not quite sure which - come to the house to work with Ron.   She was very shocked to hear that we had waited 10 weeks for any official physio and then it was only fortnightly and she was willing to come weekly but  it seems professional protocol has got in the way as she said she would check with Marion and now we have not heard anything.

Next Tuesday should be the first Group Session and we ae waiting to see what that is like.

Ron has had a birthday since I last wrote and we went to Graham's  for a meal which was lovely and we were joined by Elliott which pleased Ron.


A couple of weeks ago we went to Lorraine's for the afternoon and then on to a Thai Restaurant for dinner.  Ron just about managed the front door and steps and we are going to try again today.

We have ordered an electric scooter, the type that can be put in the car, it has not arrived yet so I can't tell you whether Ron will be able to operate it with one hand.  Fingers crossed.

Not much else to report we lead a rather boring life.

Friday, 1 May 2015

Ups and Downs

Had a horribe day on Tuesday.  We turned up at the hospital for our physio appointment at 11.00 and the physio did not turn up until 12 but not to see us but another client.  She had no record of our appointment.  Well I know one thing she definitely made the appointment two week earlier because I always put it straight into my I-phone.   She said she thought our next appointment was for the group session which is to be on 5th May well this would have meant a three week wait for physion- not on, I think.   Ron was discharged from hospital on 7th January and since then we have had just 3 official physio appointments!!   I was so annoyed and upset I had to fight back the tears.

We went to The Nags Head for lunch to drown our sorrows (food, tea and diet coke).

We don't know how these group sessions are going to work out.  I am trying to stay positive.

Following our aborted physio session, Ron felt he had to work extra hard at home doing lots of walking and inevitably he had a fall.  I felt guilty because I think he was trying to cheer me up because I was so upset.   We had a job getting him up but eventually we managed.  No injuries thank goodness but of course another  blow to his confidence.

Today we had a visit from the Community OT and this was very positive.  She wants to come every week and work with Ron and she is also going to speak to the Community Physio as she thinks that she would be able to work alongside Marion.   The more input we get from professionals the better because this is what gives Ron the confidence in himself.

We have a busy weekend ahead, Lynda and Nigel are coming on Saturday and we are going to try and get in Lorraine's house on Monday and then we are all going for a meal at The Royal Tiger, a Thai Restaurant.

Monday, 20 April 2015

Busy with baskets and a weekend away

This is one of the trays of begonias that Ron and I have rescued from last year's summer baskets.  Ron was able to set up on the cutting table in the garage/workshop and I brought the baskets into him one at a time.   This was a good day as it made Ron feel useful.  The corms have all been washed to get rid of the pests and then dried in the sun and are now in trays (2) lightly covered with compost. Hopefully we will have success and will be able to have some baskets later in the year.

We have successfully completed our weekend away in Wales(Cwmbran).  Everyone was so pleased to see us and we were made very welcome. Lots of help was offered. I managed the driving there and back with no problem Motorway on the way out and non-motorway on the way home -some lovely views in the sunshine.  Our friends took us out in their cars while we were there which seemed to work well as we were able  to enjoy their company.  Unfortunately Ron was not at his best physically so was not able to walk about the room as we had hoped but we managed with the wheelchair although it was very tight in the bathroom as we did not have a disabled room.   Not sure what was wrong with Ron but I think being in a strange place unsettled him, so much of this disability is down to the mental outlook and ability, if only we could bottle a little physiotherapist because they fill him with confidence and then he can do loads of things.  Last week he was able to climb up three steps and then down the other side plus he walked the length of the gym pushing the wheelchair and then walked for 2 minutes on the treadmill but in the hotel he could hardly stand upright.


However we have shown that we can manage so let's look at what else we can do this year!!

Wednesday, 8 April 2015

Busy at home

Since we have been home, there is always something to do.   In order to create an entrance to the garages for the electric wheelchair a storage cabinet had to be dismantled and emptied. Consequently lots of rubbish/valuable spares which were just loaded on to the cutting table had to be found a new home.  We made a good start on sorting this out.   

Last week I put some things on Freestuff and some very nice people came and collected my unwanted goods.   Two garage heaters have gone on e-bay today, even if they sell for only 99p and someone collects them, I will be pleased.  Let's wait and see.

Erica and Lucy went off to Australia the same day we moved home and Graham went out last Wednesday basically to bring Lucy home so she can resume school.

Ron is more or less back to where he was before the disastrous tablets. He has  been having his physio weekly and always feels on top of the world after his session.  Today the physio came to the house to see what we have to work with here at home and she has given us lots of ideas.

Unfortunately as I expected being home has compounded Ron's frustration at not being able to do things and one day last week he was rather depressed but he seems to have pulled round.

On Saturday I went to London with Andrea to enjoy my birthday/mothers day gift of a meal in Marco Pierre White's restaurant.   We had a lovely day and Ron was OK with his babysitters,Vince and Ryan.   Steve came to cut the lawn and Sheila came too so he had a nice day with lots of visitors.   Chas has been busy painting the garage and I must say it looks lovely.

We went out on Sunday to The Duck at Newney Green for a RREC lunch.   We went in the S type and that was OK the entrance was quite difficult but fortunately there were some strong men on hand to help.  We had a good lunch but Ron was absolutely shattered when we came home.   I am a bit concerned as to how he will manage when we go to Wales but we have paid up now so the die is cast.

Our 30th wedding anniversay was on 30th March so we went out for lunch to celebrate.  I cannot believe the years have passed so quickly and I am so thankful we were both here to enjoy the day.

It's 10.45 now and past my bedtime so I will end this rather muddled blog and try to write another soon.

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.