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

Friday, 16 January 2015


The month is halfway through and nothing much is happening.  Various frustrations with authorities.  When we left the hospital they said to arrange to borrow a wheelchair from Red Cross for a short time until our wheelchair came through, we had a letter saying they had received the request and we would hear something shortly.  As the wheelchair that we have borrowed from Michelle's family is not 100% satisfactory for Ron, I phoned the wheelchair people and they said they aimed to provide wheelchairs in 18 weeks!    The physio's office is in Welwyn and they plan to be in touch with us for a meeting and assessment in two weeks but we have not yet heard.  Ron is getting rather bored.   It is great when anyone comes to visit.  

We look forward to the weekends when Graham is kind enough to take us out wherever we want to go.  This Saturday we are going to look at electric wheelchairs and chairs that tip you out.  Today Graham is meeting the wheelchair guy at our house.

We have stopped two carers visits so we have the one in the morning which is supposed to be get out of bed but we manage that ourselves so by the time they come (between 9.30 and 10.30) Ron has been up for 3 1/2 - 4 1/2 hours but they take him to the bathroom and then wash or shower him.  We have also retained the afternoon visit but rarely use it so will be dispensing with it eventually.  I I am hoping to go out for the day on 11th Feb but is will take some arranging as it is an early start 8.00 in Stansted and I will probably not be back until 6.00ish.  It is a U3A outing to "secret London"  I have to arrange for someone to be here to take Ron to the toilet, someone he would be happy with helping him with personal care, maybe I can find a private carer - needs discussing.   I could do breakfast before I go and leave a packed lunch and dinnner would wait till I return but then there are meds to be   sorted......

Otherwise everything is going well and we are managing better than anticipated.

Wednesday, 14 January 2015

This is the picture that you could not see yesterday.

Tuesday, 13 January 2015

A lovely morning


Sunday, 11 January 2015


As someone has pointed out I have not written for a few days so here goes.   The reason I have not written is that there is not much to report.  We are settled down here in Henham.  It is comfortable here for us and it is nice to have Lucy nearby to perk up her granddad.

Carers come as arranged 4 times per day, different people all the time no point in learning names.  As I planned we are keeping the arrangements but out of 16 visits 6 have not been required but it has not been a consistent time so difficult to say which visit/visits to cut out.  The transfers into and out of bed we have dealt with ourselves with no problems expecially since Graham fitted up a Heath Robinson fixture to help Ron pull himself up (a length of webbing ties to the end of the bed), with assistance Ron is able to pull himself up to standing in the bathroom while his inaccessible parts are washed and he does the "important bits", he is also able to sit on the proper toilet rather than the commode type thing so small steps but important ones.

Unfortunately sleep patterns are atrocious resulting in some very early mornings for me 3.58 this morning!  Whilst I do appreciate that Ron feels as he says trapped, I must have more sleep Friday morning was 4.30 and I told him not to wake me until 5.30 on Saturday which he did but then spoilt everything this morning.   I have tried to keep him awake today but he is sleeping now.   Hopefully Elliott is coming later so that should keep him awake.  We have had Chas visit on Friday, Saturday we went to Baldock to look at stairlifts, then today Michelle and Andrea and Vince came so this has been nice for Ron.

We took the wheelchair outside this morning and I pushed it round the brick path and Ron attempted some steps with Graham and I holding him on each side.  I thought it was a bit ambitious and so it proved, he did however do a few steps, but of course he is disappointed.

I am hoping to hear from the physio tomorrow if not I will try to contact them as this is what Ron needs to give him some incentive although he does exercise frequently.

More when there is something to say.