Graham is still in bed - phone calls appreciated

Dear all,

I went to the hospital yesterday with Airasa (because I have an injured toe followed by dropping a jar on the same foot!! – thus I am not driving much again). We were in good spirits because Airasa had interviewed for a new teaching position in the morning and was notified that she was successful at 11:30 (there were only 2 applicants). So she is over the moon at having a new school in September.

Graham has been in bed for 11 days now with the pressure sore. Yesterday he said that the nurses exclaimed that it is much smaller now so we are hoping he will be out of bed again soon. It is so difficult for him to be back in bed for so long. He had got quite expert and changing his TV channels and playing the videos, as well as feeding himself and even moving his wheel chair. After so long in bed, he will have to re-develop his skills again.

And when he is in bed there is virtually nothing he can do for himself. He can only ring the big smiley face button to call a nurse to help him. It is much more difficult for him being in bed all the time this time around, now that he knows what he can do when he is up in a wheelchair. But he is doing the best he can to keep his spirits up.

One thing is that he has started to listen to books on CD. He remarked that it might take him a while to try something new like that but he really is not a Luddite! I believe he will find this a nice change from watching TV, which has never been more than a method of watching baseball for the most part in the past, I think!

We continue to receive papers from the states asking for information on his condition in preparation for getting a move to California organised. It is still no doubt many months in the future yet, but all the facilities have to be in place, and the apartment has to be ready and Mr. Jamil his consultant here has to feel he will go to a safe and secure place there.

I know all of you will do what you can when the process finally happens. There will be much humping of books out of his old place and arranging of a few tasteful items in the new place which will need lots of space for his wheelchair to move around! There will be much throwing out of things or giving away of things as well. But I know you are all kind and wonderful folks and will help him with whatever skills you have to make his life there easier.

It will be a while though so you don’t need to put on your grubbies just yet!

Once I finally move to my new flat it will be a place Graham can come to visit. We are hoping to get him outside of the hospital for a short outing next month to go to a local park that is all wheelchair accessible. We will get a wheelchair taxi, take him to the park, wheel him around the area and into the nice facilities, have a cuppa and generally re-introduce him to the outside world. Our weather in the summer is not too bad when it is good, if you see what I mean. He really misses the steady warm sunshine of California and we don’t get that kind of weather except for a few days scattered about in the summer months. We will try to make the most of those days when he is up and about in July and August.

Airasa and Ian are going away for the next few days (half term for schools and a bank holiday on Monday for the rest of us) so they are headed south to visit friends. I will get to the hospital at least once, depending on my driving foot. If it is not too difficult I may make it in twice. It might be a good time to try phoning him. Remember to use the main phone number first to get him set up. Ian had an hour’s chat with him on Wednesday because he was unable to visit due to his own back giving him pain so he could not drive! But the chat was nice and it is easy for Graham to keep up the chatter for an hour. He prefers that every time to watching TV, or listening to music or books on CD, I am sure of that.

So progress seems a bit slow at the moment but we know he will be up again soon and that will be very cheering for him.

If you want to send emails to him in response to this, send them to me as Airasa won’t be in again until next Wednesday. It means so much to hear from you all.

OK, enough rambling from me.

Kind regards to you all.

Linda

Sunday 22nd May update

Dear Friends of Graham,

I went to see Graham yesterday for a short time. He is still in bed due to this pressure sore. They can be real beasts to clear up. Apparently it started with some dry/flaky skin that they put some E45 cream on to clear up. But I guess that backfired as when they took off the covering, the skin had gone mushy and thus was on its way to a sore. So he has been in bed since Monday. Of course, this is quite disappointing to him. Although it means he does not have to wear the collar, it also means he is losing out on both OT and PT and even though they come and move his arms and so forth, it is not the same as being up and doing things for himself. He will lose his strength and have to rebuild it.

I read him a few emails and we have been working on getting some of the arrangements started to get him returned to California. There is a small, dedicated group of you who are working with me and Airasa on this. Of course we don’t want to duplicate any efforts, but sometimes things go astray and then we have to hurry to meet deadlines. I guess I am of the opinion it is better to err on the side of repeating things rather than missing things out by mistake. Thank you to the smaller group working on this important aspect of Graham’s return. To bring everyone up to date (I even forget what I have told you!) we need a rehabilitation facility for Graham to transfer into when he leaves here. He will stay in that up to 8 or so weeks while he is introduced into his own apartment where he will also need care on a very regular (almost hourly) basis. If he can get a 2 bedroom apartment, the carer can live with him and provide help day and night. Some of the help will be paid for by some state program or other (not sure about this exactly). The apartment may be supported through some kind of Housing Program there. It is a question of having the facility and the apartment in place before he can leave here, as the doctors here won’t release him to what they consider an unsafe environment.

Once an apartment is secured there in California, he will need help to move from his current place to the new one. He has plans to downsize quite a lot – he has many books he will have to dispose of in one way or another. He will need plenty of space in which to get around in a wheel chair and thus many of his possessions will probably also have to be relocated. It is unlikely that any of us will be able to travel with him to California, so it will be up to you all to make the necessary plans and carry out the work.

Gale has said he might be able to go to California to help along these lines. He was an absolute star when he was here, helping to do some needed repair work to my house to make it more saleable (once the market picks up and I have viewers I am sure it will sell…). Graham will be transferred to California in some sort of medical plane or with some sort of medical attendees. We don’t know the details of that yet either.

WE have said right along that as long as Graham is making progress here we don’t have to be too anxious to move him to California. However, I am sure that he could make progress there as well, so finding him a new abode and the facility is the crux of the return really. The doctors said once that if he had a place he could visit here, he could go out for the day on a home visit. Once I move to my new flat, it is wheelchair accessible and he may come to visit me. We’ll see. I keep hoping to get the keys to the flat but they keep on being stalled. Eventually it will be mine, though!

Airasa and Ian went walking in the countryside this weekend with friends. I understand it was a 7 mile walk. We do have beautiful places to walk here.

I read Graham a story sent by Rita, a couple of emails and did a medical form with him yesterday. He is rather bored out of his head with being in bed – was watching the football (soccer) final, which is not his thing but was the only thing on TV they found for him. He can’t control the TV when he is in bed. He can’t do anything when he is in bed except wait to be turned every 4 hours.

Please send healing vibes and prayers to get that pressure sore cleared up so he can be up and doing things. He will be so glad to be up again!! At least Marge and Gale saw him up and moving around in his chair while they were here and he only was in bed again the last few days before they left.

Right, not as brief as I promised at the start!!

Take care all, and keep those cards and letters coming – they are the one thing that seems to cheer him up!

Kind regards,
Linda

19th May update

Dear all,

Just a little update with photo of Gale and Marge saying goodbye. Graham has had to be in bed the last 3 days and has a few more to go, as some pressure sores were developing. Though this feels like a set back, he has been without his collar for these days and it is so nice for him to be able to move his head without the restrictions of the collar.

We went in yesterday for the final visit. Though he was in bed, he seemed quite chipper. He did a couple of MP3 messages and was able to speak smoothly and freely without the restricting collar. That was nice. Of course it was a rather sad goodbye but we are all hoping Graham will be back in the States by the end of the summer and then his mum and cousin and other relatives and friends will all be able to see him and visit with him.

Progress really has been good over these months and it is still early days. I personally believe Graham has every chance of regaining the use of his hands, and eventually even the use of his legs. The brain is miraculous and can rewire the body and I am counting on that!

Marge and Gale have enjoyed their 2 weeks here. We went out yesterday for some final souvenir shopping and for a pub lunch at the Roundhay Fox near the Canal Gardens, which we walked through after lunch.

Thank you all again for your continuing support and help. It is good to know Graham has so many friends and loved ones who will be there when he arrives to help him through the transition from here to there, and then into the community.

Kind regards,
Linda

17th May update

Dear All,

I have not been out to see Graham, but Gale and Marge have been going on the bus. Sunday I managed to drive again, and took them to and from the bus, and again yesterday. On Sunday, they found him sitting up in the patients’ lounge reading the newspaper so Gale took the attached photo. But yesterday he was in bed with suspected bed sores, being rotated from side to side. A few emails through me would be good now – he will be feeling down due to this.

We are still waiting to hear about a place for him to live there so the process of getting him back to California can get under way.

I produced a photo album for Marge of all the photos of Graham over the months (plus the ones Gale has taken of Leeds and York). She seems to like it and those of you who know Marge will no doubt be seeing it when she returns.

I think Gale and Marge have enjoyed their visit here – it all seems to go so fast. They leave on Thursday morning to return to the States.

Keep those cards and letters coming, folks – they cheer him up when he has this kind of setback.

Kind regards,
Linda

update from Linda and Gale

Hello all of Graham’s friends,

Gale (Graham’s cousin) and Marge (Graham’s mother) have been here for a week now. Gale wrote the following letter back home and said I could send it on to you all as well. I did take them out on Saturday and Sunday for a visit but on Monday morning I smashed my little toe on my right foot thus making not only walking but also driving impossible for the time being. Gale and Marge went to visit by bus on Tuesday but Marge came down with a bit of a sore throat and cold so has been stuck at home with me! On Wednesday and Thursday Gale went on his own, venturing out sitting on the top of the double decker bus and getting some interesting sights in on the way to Pinderfields. He has been a star in helping me to do some decorating to sell my house. Today, after Airasa’s job interview (fingers crossed everyone!), she and Ian will come and take Marge to the hospital for a visit and Gale will have a day of rest. I hope to be mobile again soon but for the moment I am stuck at home.

Over to Gale then:

Morning,

Wrote you yesterday, but before I was able to send, it disappeared into the great unknown. Anyway, Aunt Margie has been sick for the past couple of days so was unable to go to the hospital with me Wednesday and Thursday so I went on the bus to Pinderfields by myself.

Yesterday Jim was in bed when I arrived in the afternoon as he had minor surgery in the morning to insert a pubic catheter. From what Jim told me there are three types that are used and his doctor felt this was the best for his condition at this time; anyway I was shocked to find him on his back with an oxygen mask. He had forgotten to mention the surgery the day before as it had slipped his mind with all the other topics we were talking about.

Jim’s overall condition was not a shock to me and he is making improvements slowly but surely. Wednesday while I was there he wheeled himself into the patient lounge on his own, which took a while, but none the less was able to get the job done. Now he's not gripping the wheels to do this; he has special gloves with rubber pads that provide substantial friction and allow him to move the chair by simply brushing the pads over the wheels.

The weather here has been wonderful and, although it has rained a couple of days, the sun has been out everyday and I find the climate this time of year much like home. We enjoy the different wildlife (mostly birds) but different than what we have around home – Magpies, etc. Linda says (and puts food out for) there is a fox that comes by the house at night, although we haven't seen it, but living next to a wooded park I’m certain they're around. Don't know if they feed upon cats, but there certainly are lots of them here.

Haven't had much of a chance to get out (other then the area around Linda's home) and do a lot of sight seeing, but this Saturday Airasa and Ian are taking us to York where the shop keepers will be waiting for us. Linda did take us into Leeds and pointed out some of the interesting sights and also to the University where she works. Took a lot pictures so will do a slide show when I get home.

Glad I didn't rent a car and try to get around as I think it would drive me crazy with all the buses on these narrow streets and not know who is supposed to pull to the side to let the other by. Linda says there are rules about this but nobody bothers to follow them.

Well I'm going to get busy and start breakfast for Aunt Margie and myself and then I've got a little painting left to do on a wall I repaired in Linda's home. So talk to you later and see you when I return.

Love,

Gale

Mum and Cousin arrive for 2 week visit

Dear all,

Graham’s mum, Marge, and his cousin, Gale, arrived safely on Friday afternoon and settled into the new time zone, being so far away and after such a long trip! They spoke with Graham by phone that evening,

Saturday we went to the hospital arriving around 2 and staying til just after 6. It was a long visit and I confess we might have stayed longer but for me and my back. [I need to lie down every few hours and my limit had been reached!] We went into Pinders café and had some hot drinks (Graham does like his cappuccino and so does his mum!) and opened a package with this adorable moose soft toy (now residing on top of his TV) and some Christmas candies that really took me back to my childhood! I also read him several emails, one from work about his continuing absence, and a couple of others from friends. They are always good to receive and read, so don’t stop.

I know you are all busy with your lives, but your letters are a big part of Graham’s recovery.

We went back to the ward for Graham to show Marge and Gale how he works his television. Then it was time for his evening meal. I set him all up to feed himself and then he proceeded to do so with such control I was extremely impressed. When he first started feeding himself, his movements were rather too fast and a bit jerky. Yesterday he had such wonderful control, getting food onto the spoon, getting it into his mouth with a slow smooth motion, chatting away to Marge and Gale calmly while feeding himself. He needed almost no help at all, just a little movement of the final bits of the meal to a place he could get an angle on it. He tends to eat salads, as they can be cut up into small pieces and will fit nicely onto the spoon. When the spoon was too full he would tap it, and bits would fall off onto the plate. I was watching from afar, chatting with another patient. We were both remarking at the excellent control and calm that Graham was showing while he was eating.

The other patient also said he has been watching Graham in physiotherapy doing better and better wheeling himself around. I have not witnessed this specific activity as yet, but it is nice to hear reports of him doing it better and better. The other patient also remarked on Graham’s determination to succeed. Many other patients over the years had not had quite the determination Graham was showing, I was told.

At one point while he was eating, another patient was being wheeled along by the daughter and Graham stopped them and introduced them to his mum and cousin. Just like a normal meal with family and friends. I was most impressed!!

Because I was so tired we had to leave before Graham had finished his entire meal or had his teeth brushed. Today we will go in a bit later so that we can be there for the whole meal and after-meal routine. I need Gale and Marge to take this over while they visit over the next two weeks. I will be dropping them off and they will come back to Leeds by bus on Monday – but not today as Sunday bus services are not as good. Airasa will bring them back on Tuesday as she will visit after school. I will just drop them off on Tuesday and do other things.

Hopefully I will have keys to my new flat soon so I can get the moving underway. It has taken such a very long time waiting simply for some paperwork! Gale is in the estate agency business and is surprised that houses take so long to sell here. The election is over now and hopefully the housing market will pick up. It is a buyer’s market at the moment – there are loads of houses for sale in Leeds, the most in well over a decade. But I am sure it will sell eventually.

The weather has been nice so Gale walked around the lake yesterday morning while I took Marge to Tesco's to do food shopping. They will do a bit of sightseeing while they are here and also some shopping, as it is good to experience a foreign country by eating the food, seeing what is for sale and how much it costs, and visiting historical places. Leeds is full of wonderful things to see and very friendly people. I am sure they will enjoy their 2 weeks with me.

We have had a letter from one of you about Graham’s eventual move back to California. It is about paperwork and so forth – but there seems to be a possibility of him having a two bedroom apartment, so he can have a live in carer. He needs to have a facility like Pinderfields to move into first. The idea is that he would be transferred to the Care Facility and be there for 6 to 8 weeks while he is settled into the community and apartment by short visits with help. He will need care to help him into and out of bed and to help him with his physical care; but can be left for some periods of time to watch television or do computing or even reading eventually as he learns to control his environment. The progress he is making is wonderful even if slow. It is steady and it is so good to see him improving little by little.

I also took him an article about magnetic therapy for spinal injury patients for his doctor to read. Every thing that might help him is very valuable so if you see anything, don’t hesitate to send it along.

Again, thank you everyone for your loving thoughts and prayers for his recovery. I hear my gusts stirring, so I will close and let Gale have this computer so he can do his emailing and his business. It is wonderful to be able to use computers to carry on wherever we happen to be. Gale took photos yesterday I will put onto the computer later and send off one or two choice ones.

Kind regards to you all.

Linda

Birthdays and visits update

Dear All,

I apologise that we have not been doing so many updates the past 2 weeks. We have been rather busy with a lot of things in our personal lives but I am here to send out a little update and a photo.

Graham is continuing to make progress but it is slow and it is hard to keep his spirits up sometimes. The emails have slowed down (at least the ones through me) and I suppose that feels a little slower to him as well. He continues to practice his new skills – feeding himself and wheeling his chair. However, he has had a bit of a cold and thus had to stay in bed a bit more which is hard, because when he is in bed he is totally helpless. When he is up he can at least watch television and control what he is watching.

Still I believe progress is being made.

Ian’s parents have been visiting this week and the photo shows the first (and possibly only) time that Airasa and Ian are in the same space with both sets of parents. Unfortunately it was a day that Graham was in bed so we could not go for a walk or sit and have a chat. But it was a nice visit. Graham had met Carole and Terry over the New Year when they went to Ireland. We saw some of the photos from that visit. After our family meal on Monday in the countryside, Carole and Terry made the trip out to see Graham on their own! As the traffic on the Bank Holiday was terrible, Carole managed to navigate through the back roads to the hospital to avoid the worst traffic queues.

Most of the visits the past two weeks, Graham has been up and talkative and we have gone to the patients’ day lounge or to Pinders café. We have talked about the election here (which was won by Labour for a historical 3rd term). He has been enjoying watching television and visiting with other patients. We also celebrated Airasa’s birthday at the hospital and Dylan came along (Naomi was in Sheffield but came up for the meal on Monday).

His doctor has returned and will see Graham soon. I know Graham is anxious to get the collar off as it is more uncomfortable than the halo was. It is very tight around his neck and it makes talking difficult. This can be quite frustrating and also seems to affect his breathing so he has to talk in a rather laboured way, stopping to take a breath more often and more obviously than he might otherwise have to do under normal circumstances.

We have not talked about his therapy much lately. We have also been celebrating Airasa’s 30th birthday the past couple of weeks (starting the 27th of April, the Day, at the hospital) so there is a photo attached from that as well. This has kept us a little busier in general.

Ok, everyone, that is a brief update.

Graham’s mum and cousin arrive today and will be staying at my house. They will probably go and visit him tomorrow and I will take my trusty camera along. I hope to capture Graham making his wheelchair move, but until he gets over this cold, that won’t be happening. He prefers the weekdays when he can do physiotherapy and occupational therapy and a day in bed did not make him very happy because he could not do his therapies. But on weekends we can go and stay longer so I expect his mum will spend a good deal of her visit at the hospital.
I will write another update in a few days.

Please send emails to me the next two weeks to print and read as I will probably be going out to the hospital more often than Airasa because I will take his mum and cousin there possibly daily.

I hope all of you are well. The sun is out this morning and I better get the house prepared for my guests.

Love to all,
Linda