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

Tuesday, 3 February 2015

Catch up

There is not much to report although we did go to our RREC AGM on Sunday.   It was quite hysterical here in the morning.  Firstly, I had great difficulty in fastening the top button of Ron's shirt, then the fiasco of tying a windsor knot using Ron's right hand and my left but we did manage it even though we had to hide the uneven ends under the blazer.  It was lovely to meet up with old friends and that is our first social occasion in the wheelchair out of the way.

Another brush with "the system" yesterday.  Andrea came on Sunday evening and massaged Ron's legs and she thought that I should ask the doctor to call and see Ron as his left leg and foot do get quite swollen.  So on Monday I telephoned to book a home visit only to be told that the doctor would not do a home visit as we are out of the catchment area.   Now while I appreciate that doctors do not want to spend hours driving around, don't you think they could have mentioned this when I took the discharge summary in, or when I phoned to ask for some medication recently when I explained to the doctor that my husand was paralysed on the left side.  However, I have now registered him at Elsenham Surgery.   This involves filling in a form and providing two proofs of identity and one proof of address, plus of course copies of the discharge summary and medication list.  Thankfully all sorted now.

We are still waiting for the wheelchair service to provide a wheelchair, we are still waiting for the neurological physios to get in touch.  Thank goodness we have been fortunate enough to have a family member, the lovely Jenna who is a physiotherapist and she has been kind enough to come and help Ron and boy has it made a difference.  We try to do the exercises she suggests in between visits and Ron is getting stronger in the leg all the time, still no progress with the arm whih frustrates him but we just keep at it.

We are going to try and get one of the community OT's to assess our home as this will give us a better idea of what we need to do before we move.

Wednesday, 28 January 2015

Here you can see all our e-bay purchases - two electric wheelchairs and a modern rotastand all for less than half the price of one of the wheelchairs.  Ron is a lot more confident using the blue one as it has the choice of a much lower speed.   I have also bought (full price) a large wheel wheelchair as I am told they are a lot easier to push so this will be the one that goes in the car.

Last weekend we went to test out some rise and recline chairs, then came home and ordered one online.   I always feel guilty doing this but when you save 450.00 there cannot be any argument.  This should be with us in 3-4 weeks, then we should be all set up with equipment.

Next Wednesday we have some of the research people from Addenbrookes coming to do 5 mins worth off tests this is a follow-up for the trial that Ron participated in which involved wearing a halo device which was supposed to bombard the clot with  some sort of rays, of course we don't know if we got the real thing or the placebo.

We are going to try to get Ron in my car at the weekend.  We will try when there is a strong man about, just in case of problems.  To get in the car Ron needs to stand which he can do if he has something to pull up on, then turn, which entails lifting up one leg at a time and putting them down in a different position and this is the difficult part as he needs to keep his bad leg braced all the time and tto do this he has to concentrate very hard.

Work has started on Burton End.

Friday, 23 January 2015

Frosty Morning

This is one morning I am glad I don't have to venture out although I understand that it will get a lot warrmer later.

I have cancelled our teatime carers as they are not required.  It is our plan to dispense with the carers all together, we will be having a test tomorrow as we are going out to look at rise and recline chairs early in the morning so I will be taking Ron to the bathroom to wash him and we cannot wait for the carers to come.  Graham and Ron are going out after lunch to Collect another electric wheelchair and a different type of rotastand - more e-bay purchases.   I will spend the day shopping.   I have a ten pound voucher for shoes in M & S so I might get some shoes if I see anything I fancy.  I will also have a leisurely wander round Aldi looking for inspiration for different lunches as Ron has told me he does not fancy sandwiches any more, he would like pies and slices every day but not healthy enough.

A friend/family member who is a physio came on Wednesday and gave Ron a good workout.   He was so encouraged after she had been as it showed that he has not lost the movements that he had gained in hospital.  She has shown us lots of exercises that we can do on our own and explained how the shoulder works (this is where Ron gets pain).

I phoned the neurological physio office yesterday and they confirmed that they had received the referral on Wednesday and we are now on the waiting list!!  Who knows how long that is I am scared to ask but at least we now have a once a week offer from our friend.

Several visitors this week and this is always encouraging for Ron - a different person to talk to.

We have made a decision about the stairlift - amazing what you can save by shopping around (thanks to Graham for this).   Depending on the weather work starts at our house this weekend.

Tuesday, 20 January 2015

All systems go!

Here is Ron's electric wheelchair bought on e-bay for a bargain price, he has been busy this morning coming to grips with the manoeuvring - he is not used to joystick control unlike our granddaughter Lucy (8 years old).  

Graham and Ron went all the way to Southampton yesterday evening to collect it.  Surprise, surprise Ron slept very well.

Here is another little present from Graham

Here is Ron cycling - a super little gadget to exercise Ron's legs and also arms.

We will very soon have electric wheelchairs coming out of our ears as we also won another on e-bay which will be collected at the weekend.

We are feeling a lot brighter today.  Yesterday was a nightmare, problems sorting out medication prescriptions - all sorted now.    Then I phoned the neurological physiotherapist in Welwyn to say as it was now 2 weeks from discharge did they have any information about when we would see anyone and they told me that they had not received the referral.    I phoned H & E and they said it was definitely sent and they would resend it.  I was so upset!  I asked if they could send an accompanying letter explaining the circumstances ad they said they would but I fear another 2 week wait is ahead of us.  In the meantime I am going to try and get some private physio.  Thank god I am fit and able with all my faculties I dread to think what must happen to people without the support that we have.

More good news I have sorted out the carers for the 11th so all systems go for my trip to London