Saturday, 12 July 2014

New Car! :-)

We are in the position......at the moment.......to have a Motability car. Motability is a scheme where disabled people are able to use their Disability Living allowance (or PIP - Personal Independance Payment) - higher rate mobility, to get a new car. 

Wait a minute, let me start at the beginning!!
When you are disabled, whether you are born with it or develop it through life, you are entitled to apply for a benefit that used to be called Disability Living Allowance (DLA). The government.....in their wisdom (don't get me started!) have decided to change this benefit to something called Personal Independence Payment (PIP) so if you are applying for the first time now you will apply for PIP but if, like me, you've been having it for years, you will be on DLA......until they get round to changing us over! 
This award comes in two parts. There is the Care component and the Mobility component. Not everyone will qualify for both but that doesn't matter, you can be awarded one without the other.
I was awarded both Care and Mobility at the higher rate and I was awarded it indefinitely.

If you have the higher rate mobility component of DLA and you have at least twelve months remaining of your award, instead of having that money paid to us each week, we can use that money to pay a company called Motability for a car that we will have chosen. 
When I was first awarded my DLA and I was told we could order a brand new car, I thought someone was joking around with us! 
To be honest, I'd never had any dealings with disabilities and therefore knew nothing about what was available to us! 

Martin and I went and ordered the car we had always wanted.......a Peugeot 206......it was October 2003! When we collected it we couldn't believe that we were allowed to drive this brand new car off the dealership......were they mad?!?!
The trouble was, we didn't think about it very much! A Peugeot 206 was a lovely car and was perfectly OK for us when we first had it but by the end of our three years with it I hated that car! It was a regular car and so getting in and out, when you have mobility issues, was not ideal but we hadn't thought about it from a disabled point of view, when we ordered it and we certainly hadn't thought about how I would be by the end of those three years. We look at very different things when we are ordering a car now! 

The Motability scheme was different back then because you had to pay for any adaptions you needed as well as any advance payment for the car, depending on what model of car you chose and which style of that model. You only got one set of tyres in those three years, so if you needed any more you had to pay for them but pretty much everything else, apart from petrol, was covered under the warranty. It would be serviced every year and just before the car goes back it has an MOT which is paid for too. 
There are basic adaptions that you can order for free now. I have a push/pull accelerator/break which is fitted under the steering wheel and a steering wheel ball. The push/pull device is brilliant, you literally pull it to accelerate and push it to break. It means that I don't need to use my feet or legs, I just drive with my hands! :-)
I had no idea what was available to disabled drivers to keep them driving. As a fully fit person I took so much for granted. It wasn't until I started losing things, like my mobility, that I realised just how lucky I'd been. But there is a huge range of things available to keep disabled people driving and therefore keeping hold of that independence that we so crave! 
I have to say that before I got my first Motability car, I had a driving assessment. I had someone who came and talked to me about the difficulties that I had and what would be useful for me. Then we went out in his car, which was adapted with hand controls, so I could try it and see what I thought! It was mind blowing at that point.......driving a car with my hands.......that was insane! ;-)

Since that first car we haven't looked back! 
Next we had a Chrysler PT Cruiser, which, although it was unpractical from a fuel efficiency point of view, it was our favourite for accessibility, comfort and just great style! We like having something that is a bit unusual and something that there aren't so many of on the roads! 
The following car was a Nissan Note......not so rare! This was a great car......it just wasn't the PT Cruiser!! ;-) 
And then we got our latest car, a Ford B-Max, the one with sliding passenger doors! 

We got the Ford in January last year, 2013, and we were delighted with it!
We loved it from the moment we saw it and it ticked all our boxes, it was easy to get in and out of, it had cruise control, air conditioning, reversing sensors and Martins most important requirement......a DAB radio!! In fact we didn't test drive anything other than the Ford, we were that convinced of its suitability. 
Everything was fine with it until October last year, less than ten months on from picking it up.
We had started to notice that when you pulled away in first gear, it would shudder or stutter. We weren't happy with it after we had come back from our holiday last year so we popped it up to the dealership - Ford Vospers Exeter - and asked them to have a look at it. They did and agreed that there was a problem so it was booked in to be repaired. 
It turned out that they had to take out the whole gear box to repair what was needed. They had the car for three weeks and that was the first problem, we weren't offered any type of courtesy car, I had to sort all that out with Motability, who were brilliant, but that wasn't the point!! 

We got the car back and as far as we were concerned that was the end of the matter! 
But no! Around the end of March beginning of April of this year, 2014, we noticed that the shudder was back but this time it was when you changed into second gear! 
We took the car back to the dealership again. Martin went out with a mechanic, who told him that a certain amount of shuddering is to be expected! We've never had a shudder in any of our cars so why should we put up with it in this one?! 
Anyway, he did agree that yes there was a problem and that he thought it was possibly the same fault as before. It was booked in again and this time we were offered a courtesy car.......a Ford Fiesta! I ended up not going in it because it was low and getting in and out wasn't easy. We also couldn't fit the wheelchair in the boot so it was lucky that we only had it for three days otherwise they would have had to change it!! 
After three days the garage phoned me. I was surprised because I thought it would take longer to fix it but he wasn't phoning me to say it was fixed......quite the opposite in fact! He said that the car wasn't fixed but that we needed to have it back. We should drive it for a further 1000 miles after which the fault would either be fixed or it would be worse! He explained that because they are governed by Ford Motor Company, they tell them what has to be done and apparently because the B-Max was a new model there was no protocol for this fault. They needed us to carry on driving it and report back what happened!

After talking it through, Martin and I decided that we needed to make a complaint to Motability. I wrote a letter and then rang them to see where was the best place to send it. The person I spoke to told me that I could send the letter but they could hear the complaint over the phone if I wanted to which, of course, would be quicker! 
I had no problem with this so I told them all the issues that we had had with Ford Vospers Exeter and our B-Max. The lady I was talking to was very apologetic that we had experienced all these problems. She understood and noted down all the complaints that we had. 
She explained that next the complaint would go through to be looked at and someone would phone me that afternoon to let us know that it had been accepted. It would then be passed on to a complaints handler who would phone us to discuss the issues and look at how they can be resolved. 

I will just point out that they had been in touch with the dealership we had used and had received all the details of us going to them with the problems etc. which backed up everything we had said.

As promised, we had a call that afternoon. The complaint had been accepted and our handler would call by the end of business the following day. 
True to their word we had a call about 1pm the next day. He explained who he was and said that he'd looked at the complaint, that he quite understood where we were coming from and that we had persevered with the problems for quite a few months. 
I was asked how we'd like this to all be resolved. So I said at the very least to have the car repaired fully but I told him that we had lost faith in the car now.
Without any hesitation he said to me that he had looked at everything and then asked how I would feel if he cancelled the contract and we could start again. We were bowled over by this because we'd joked about being able to get a new car but we didn't think for one minute that they would offer that as a solution!
He said he could cancel the contract that afternoon so we could go out and order a car there and then if we had something we wanted! We agreed that this would be the best solution and that's what he did! 

Now normally we don't start looking at cars until we are within twelve months of the contract ending. We don't go and test drive anything until we are within three months of it ending because you can't order anything until three months before the contract finishes. So we hadn't been looking at possible car choices at all! 
We literally started from scratch. We went out that afternoon to look at a few and pick up some brochures. The following two days were spent test driving various vehicles and on the fourth day we ordered our new car! 
I had phoned Motability on the Monday and we ordered our new car on the Friday......not bad eh?! 

So what are we getting? 
We have decided on a Fiat 500L MPW. 
It is actually a seven seater and although we have no need for that amount of seats, when the rear two seats are folded down the boot space is a lot larger. In the Ford our boot is 318 litres but with those seats down the Fiats boot will be 636 litres. This will allow us to have the wheelchair in there but also have space to put other things too which we can't do with the Ford! There are things that we are going to miss on the Ford.......the sliding doors for one but there are lots of things we are looking forward to on the Fiat! ;-)
It's going to be September before we get it.....it may be August, if we are lucky but I'm thinking September! We are really hoping we get it before we go away in mid September as it will be perfect to take three of us plus all our gear!! 

So fingers crossed everyone! ;-) 

XxXxX

This is the car and we are having it in green all over! :-)









Friday, 11 July 2014

Tysabri and it's longevity?

June 30th this year it was five years ago that I had my first infusion of Tysabri.
Five years! 

Firstly where did that time go and secondly, five years........really? 

When I started on the infusions it was a big decision for Martin and I, as it was for anyone deciding to go on this treatment. PML was a big issue. Progressive multifocal leukoencephalopathy or PML causes a serious brain infection that can cause serious disabilities or in some cases it has been fatal. I remember my first few infusions and all I could think about was PML and was it going to happen to me? They now have a blood test they do to check for a thing called the JC Virus. If you test positive for it you are at more risk of developing PML so they are able to keep a closer eye on you or decide to change the treatment. I need to be tested again but my first test was negative for the JC virus.
Not only was PML an issue for me to consider but I also remember my first few infusions for the pain and suffering that I endured. My veins are not great and suggest that a needle needs to go near them and they disappear! 
I have my Tysabri infusion done at Derriford hospital on a ward called PIU or the Planned Investigation Unit. I had been on that ward a couple of times prior to starting my infusions and there were a couple of the nurses that remembered me and I remembered them! One of them was brilliant at canulating people and because I was so difficult to canulate she always made sure she was available to tackle me! The problem I have isn't just that my veins disappear but my skin is ultra sensitive. 
One of my main MS symptoms is that I have altered sensations over most of my skin......it's especially bad on my hands, feet, arms and legs and it can be very painful, in fact it is most of the time. It's a symptom that is very hard to describe and because you can't see it, it's not easy for people to understand it. So having a cannula put in my arm or wrist felt as though someone had got a red hot poker and they were stabbing it into my skin. 
The combination then, of not finding my veins and the pain it caused was a really big thing for me and of the four weeks I had in between each infusion, I would spend at least two of them worrying about the next infusion.
One of the nurses happened to ask me why I didn't have a portacath or TIVAD (Totally Implantable Vascular Access Device) as canulating me was such a problem. I hadn't even heard of a portacath or TIVAD, let alone asked for one! I asked what it was and she explained that it is something that sits under the skin and is connected to a vein. Then when I'd have the infusion the nurse puts a needle straight into the port and the infusion goes straight into the vein that way. 
That sounded incredible! 
I emailed my consultant and explained the problems I was having and then asked him about a port and whether there was any possibility of me being able to have one, because if I couldn't change the canulation situation I would seriously have to think about whether I could continue with the Tysabri infusions. 
He explained to me about the TIVAD and the fact that it could stay in for life as long as there were no infections or problems with it. After I'd expressed my wish that I wanted to go ahead with it, he got it organised and at the end of September 2009 I had my TIVAD fitted and we've used it ever since! 
I would certainly recommend it to anyone who has problems with their veins etc. It has taken all the worry away for me now and the four weeks in between each infusion are much less stressful now! 

Having been on Tysabri for so long now you would think I was used to it and the effects that it has on me. I am used to it in a way but I do find the whole thing slightly frustrating too. I hate actually having the infusion because I don't particularly enjoy having a needle stuck in my chest! I also hate how it makes me feel. I get very sleepy as the drug is actually going in. Sometimes I'm not even finished and I can't keep my eyes open! I always fall asleep in the car on the way home and I can certainly write off the rest of that day plus the following day too. I sleep for the rest of the day of the infusion and I feel pretty groggy the following day. I mostly have the infusion done on a Thursday or a Friday and we know not to organise anything that weekend so that I have time to feel like a human again! 

I never feel any different with Tysabri either. I know a few people who have it who know when they are coming to the end of their four week cycle. They can feel that things aren't working so well and maybe they are more fatigued so they know that their infusion is due and once they've had it they feel better, stronger even.......but I don't feel any of that at all. 
It makes it quite frustrating because I don't really know whether it's working or not? I guess I know it's working because I'm not having relapses and I totally trust my consultant it's just a little frustrating that's all! 
I'm considering whether I can and whether I should take a break from the infusions for a couple of months, would that lower my risk of PML a little bit by breaking up the time I've been on it? I know that if I did take a break I'd be at risk of a relapse but how big is that risk and how bad could the relapse be? These are all things I need to carefully consider before I take such a big step and I wouldn't do it without my consultants full support either so I've written to him to ask his advice! 

I hope everyone is enjoying the weather and not suffering in it too much!
Sending out love and hugs!
XxXxX

Wednesday, 2 July 2014

Swimming again!

Oh my goodness, I have started swimming again! 

It has been several months since we last went swimming......I'm not even sure if we've been this year.......but hold on, yes I think we have, it's just I know it's been a while since we last went!!
Most of the reason for not going has been my Menieres Disease, oh and it's been confirmed that it is Menieres Disease! :-( 

I had a procedure done in January where they squirted some stuff in my bad ear, which is the left one. That numbed it and once it was numb the doctor was able to stick a probe down it to test what they were looking for. This test would come back either positive or negative and this would give them a better idea of whether I had Menieres Disease or not. My test came back positive, so yes I have got Menieres Disease! 


At that point in January I had only gone a few weeks since my last big vertigo attack. I would go on to have about four months of no big attacks......I had a few wobbles, feeling dizzy etc but nothing big. 
We went to see our GP and I asked whether I could enquire about getting my driving licence back. She said yes because I hadn't had anything much to worry about but before I could do anything about it, two days after seeing the doctor, I had three days of vertigo attacks. I think you call it Sod's law! ;-)
I had come off the Betahistine medication because my consultant had advised me to but after the second day of attacks I started up again to see if it would help........it did! 
As well as going back on the Betahistine, I had rung my consultants secretary to get an emergency appointment and at that appointment we were given some options of what we could do next.
1) We could do nothing and just see what happens over time. 
2) They could put a Collar Button (a type of grommet) in my left ear which would open up the middle ear and hopefully aid with the pressure in my ears. Then just leave that in there for a little while to see what it does.
Or
3) They could put the Collar Button in my ear, which will give them access to the middle ear where they can then put either steroids or antibiotics. The concern with putting antibiotics in the ear is that it can have a very negative effect on the hearing in that ear. I understood what they were saying but my immediate thought was that my hearing in that ear is down around 30% functional anyway so would that really be an issue?? 

The decision was made and we chose option 2! 
I didn't want to sit and wait anymore, we'd been doing that for a while and nothing much had changed. I really felt like I needed to be doing something now, so I decided that I would get the Collar Button fitted and this was done under general anaesthetic. 
The next step was just recover from having it fitted in my ear. To begin with I regretted having it done because it felt quite sore and the ear kept popping. It was really annoying but it only lasted a few days. It made a very strange noise when I held my nose and tried to pop my ears. My right ear popped OK but my left ear made a very strange whistling noise......apparently I had some dried blood left in the ear but that would sort itself out! 

I had three appointments last Friday which were all in the Ear, Nose and Throat (ENT) department. 
My first appointment was actually with a hearing therapist. This was to see if I could get any help with the Tinnitus and the fact that my hearing was so low in my left ear. We spent a while going through the history, it was interesting because while I was being asked about when things had started happening we realised that I had had intermittent hearing loss as far back as around 2010, which could quite possibly have been the beginning of the Menieres. 
Anyway, after she had gone through the history and symptoms etc she went on to explain about Tinnitus and why it happens and what my options were. We have decided that it would be a good idea for me to try a hearing aid. It can be a bit hit and miss as far as Menieres and hearing aids go but we all feel that it's worth a try! 
Throughout all my medical issues I have always tried to have the attitude that if there is a chance something will help, and the medical people I'm involved with recommend it, then I will try it! 
We need to give my ear time to adjust to the Collar Button being fitted so I've got an appointment in about five weeks to have a mould taken for a hearing aid to be fitted. 
The other appointments on Friday had been a hearing test, which showed there wasn't any change and then I saw my consultant, who had put the Collar Button in my ear. He had a look at it and was happy, he has told me to give myself a couple of weeks but then to come off the Betahistine again. I'm sceptical and he knows it because of what happened last time I came off it but he feels that now I've got the Collar button I should be OK.......we'll see!! ;-) 


Having got all the appointments done and being told that as long as I protect my ear by using an ear plug and a cap etc then I am OK to go swimming again! So, this morning, after nearly three months, I was back in the pool! I only managed twenty lengths and I couldn't put my head under the water because although I had an ear plug in and I covered it in Vaseline, I hadn't got a swimming cap so I didn't want to risk it! One is on order for me to have for next week! ;-) 
It was quite hard work and frustrating because of where I had got to last year but at least I was in the pool, which is a really great feeling! I was exhausted afterwards and slept the afternoon away but at least it was for a good reason! :-) 
I have got my Tysabri infusion on Friday so I'm not going to try and go twice this week but we have booked in to go again next Monday morning and I'm looking forward to it! :-) 


Stay well, sending big hugs
XxXxX

                                                                                                                                                  

Thursday, 26 June 2014

Please sign this petition!

Please can you sign the following petition!
It is a petition against NICE who are blocking NHS prescriptions of two vital drugs, Fampyra and Sativex. These were licensed in Europe in 2011 and which, those who can afford to, are having to pay for it privately. 
Where Fampridine (Fampyra) is concerned NICE are saying that it isn't cost effective and that it doesn't really have a positive impact but it is the only treatment that improves a persons mobility. As far as the cost goes it costs less than £2500 a year and has the potential to prevent expenditure elsewhere.....less falls which converts to less trips to A&E etc. 
I have a friend who is using it and is finding it "hugely benefial". 
With Sativex, in some cases, it is the only treatment which relieves neuropathic pain and spasticity and therefore it can vastly improve a persons quality of life. 

So please, if you can, sign this petition and help us to put pressure where it's needed!
Thank you!
XxXxX 









Sunday, 22 June 2014

Fatigue and struggling with the heat :-(

One of the MS symptoms that I struggle with the most is fatigue and I seem to struggle very badly when the temperature rises. Of my other symptoms pain is another one that is a big problem but I struggle with pain in both extremes, when it is very hot and when it is very cold. 
We have been lucky enough to have been given a grant from the MS Society which enabled us to purchase an air conditioner and I dread to think how I would manage without it now......we also have an air cooler in our bedroom and that is essential to have on overnight. 
Now don't get me wrong, I love the good weather.......as long as I'm in an air conditioned room or car! ;-) 
Martin and I enjoy watching television drama and comedy series as well as all sorts of films but we are getting behind with a lot of them because I can't stay awake long enough to watch any of them. We also enjoy going to the cinema, in fact we have a membership to our local Picturehouse. The problem with going to the cinema is that it is dark and comfortable so I struggle to stay awake in that environment too......generally the only way I can stay watching a film is if I have something nice to nibble on but that doesn't help my waistline!!! ;-)  

Martin and I have worked out a plan that seems to be working, I have to have an afternoon nap. I say a nap but I'm normally asleep for about two hours! 
If I sleep for an hour and a half or so in the afternoon from about 3pm then I seem to be able to stay awake in the evening for a bit longer. If I don't have a nap then I nearly always need to go to bed between about 6 and 7pm. 
I have tried using medication, in fact I do use Modafinil but I don't use it regularly because your body gets used to it and it becomes ineffective. I do have it for when we go away on holidays or if we are doing something that I really need to be awake for. I always remember my GP telling me that Modafinil is a really expensive drug so I always keep that in mind too. I'll never forget her telling me once that I am her most expensive patient, I wasn't sure whether I should be proud of that or not.......but I am!!! ;-) 

Having fatigue is incredibly frustrating. I didn't really realise what fatigue was properly until I was diagnosed with MS and understood how it makes you feel. I guess, like most people, I thought it meant that you were just a bit more tired than usual, but it's much more than that. 
It is a feeling of complete exhaustion and one that you cannot fight. 
For me, I literally cannot keep my eyes open and I don't always realise that it's happening. Say Martin and I are watching something, he will say to me that my eyes are going and I'm convinced I'm fine. Then in about five minutes I can be fast asleep! 
When I think back to before I was diagnosed, I remember times when I really struggled with staying awake, but I was always busy with work and I was always rehearsing for some show or another so I just put it down to being busy etc. But knowing how fatigue makes me feel now, I'm not sure that I didn't start experiencing it in the years before. 

I have recently realised that I am spending a lot of my life sleeping or resting and I find that really sad. I've never thought of having MS like that before but now that I have, it is quite upsetting :-( 
It's about making choices and planning though. If I plan to have a "nap" and I make that choice, it means that Martin and I are able to continue doing something we enjoy rather than fighting the feelings of fatigue, trying to push through it and then having to go to bed really early anyway because I can't stay awake!
It's annoying......but it works! ;-)

Enjoy the good weather but don't let it get the better of you and stay well! :-)
XxXxX

Wednesday, 18 June 2014

Multiple Sclerosis Therapy Centres across the UK.

I believe, when you have a chronic condition, that you are dealing with on a daily basis, anything you can find to help make each day a little easier or to ease the struggle, has to be a good thing. Whether that is by using medication or doing some simple daily exercises or maybe it is to have a massage, go swimming or have hyperbaric oxygen therapy, any one of these things, big or small, may be the difference between having a good day or a bad day.

I'm fairly lucky in that we have a therapy centre relatively close to us, in Exeter, it is about half an hours drive away and I, of course, have Martin as my chauffeur but not everyone is as fortunate as I am and I've often wondered what it would take to organise our own therapy centre closer to home.......big dreams of mine!
I have used the Exeter centre on and off for a few years now and we are lucky in regards to the therapies available to us as, among other things, they have two oxygen chambers there which provide oxygen therapy. I've not had this done myself but I have been considering it lately! 
If I understand it correctly you are breathing in 100% oxygen and this can have a dramatic effect on someone's fatigue......a symptom that I struggle with on a daily basis. I think the issues I have with oxygen therapy at the moment are that you have to commit to several sessions to begin with but also......and perhaps more importantly......it is quite expensive and so then you have to weigh up the cost with the possible benefits etc!
I normally use the centre to have a massage every couple of months or so and that is something that does seem to help me, but the centre has all sorts of therapies available from exercise classes to physiotherapy, massage to Reiki and Reflexology to name but a few! 


THE WEST YORKSHIRE MULTIPLE SCLEROSIS THERAPY CENTRE

I was recently contacted by someone who explained to me about a popular Therapy centre in West Yorkshire that had to close it's doors in January due to a serious fire in the building where the centre was. Fortunately they have been helped along the way to finding a new home for their centre by Deborah Powell from SM Commercial, and this new venue will be opening it's doors once more to go on helping people with MS. 
It is based in Leeds and this centre also has Oxygen tanks that provide Oxygen therapy.

So please spread the word that they are back open, ready and waiting to continue helping people with MS hopefully have that better day! ��

If you require any other information the centre is now based at the following address
Unit 3A, Olympia Trading Estate, Gelderd Lane, Leeds LS12 6AL
Telephone: 0113 250 4528 




PRESS RELEASE 10th June 2014
The West Yorkshire Multiple Sclerosis Therapy Centre (MS Therapy) which has been closed since January has secured new premises and is scheduled to re-open in June thanks to the help of SM Commercial.

The charity was forced to shut in the aftermath of a substantial fire last September which caused mass destruction at the Leeds Road site it shared with Airedale International Air Conditioning. 

"Although the unit we occupied wasn't destroyed we were told that we couldn't stay on the site while the rebuilding works went on over fears it would be unsafe for us and our clients," says MS Centre Manager, Joanne Goodwin. "Although Airedale has been incredibly supportive and helped considerably with moving costs, we were all devastated by the news."

MS Therapy treats around 150 individuals every week and provides a range of self-help treatments and management therapies for people of all age groups who suffer from Multiple Sclerosis (MS) and other conditions including cancer, cerebral palsy and other debilitating conditions and neurological illnesses. The centre offers Reiki, physiotherapy, reflexology, Tai Chi and Pilates but is perhaps best known for providing oxygen therapy that can helpease the symptoms of Multiple Sclerosis.

Finding suitable new premises presented several challenges: The new centre needed to be on one level and spacious enough to accommodate two large oxygen chambers and other sizable equipment. It also needed to be within easy reach of service users.

"We wanted to find somewhere that would be accessible to new people needing our services and likewise for existing clients who have been used to
travelling to see us on Leeds Road, so it was quite a daunting task," says Joanne. "We knew the temporary closure would have a devastating impact on our clients and their carers who come to us both for treatments and to share the problems they face with others who are going through the same thing. Without us, many feel very isolated."

Airedale International Air Conditioning had to find a temporary site for its own operations and, during that search, alerted the charity to an available warehouse at the Olympia Trading Estate on Gelderd Road. The empty facility offered almost 6,000 square feet - perfect for MS Therapy's needs.

Deborah Powell is Head of SM Commercial in Leeds and specialises in Commercial Property work. She managed the lease negotiations on behalf of MS Therapy and  helped MS Therapy with their application for planning permission for change of use.

Jo and her team gave Deborah a guided tour of their old centre so that she had a clear understanding of the charity's work, the impact of the temporary closure, and the magnitude of the equipment that would need housing in a new building. 

"It was important to us that Deborah understood our needs and how essential it was that all inspections and legalities were completed in a timely manner. The sooner we were able to move into our new home the better for the people we support, but we also needed to secure the best possible deal," explains Joanne.

"Deborah was able to see for herself the lifeline that we provide to so many vulnerable adults and children, and the impact it would have on them every single day we had to close. Solicitors can be intimidating but not Deborah - she's friendly, approachable and accessible. She really 'got' us and understood why we were so upset. We couldn't have asked for more."

Jo says that working with Deborah alleviated some of the strain of the move.
"Each time new obstacles presented themselves, Deborah just sorted them out. If I needed to get hold of her when she was in a meeting she'd ring me back straight away - and she went above and beyond to the point that she even helped project manage the removal and installation of the oxygen chambers. I can't begin to count the number of occasions we've wondered out loud what on earth we'd have done without her.

"It has been a very difficult and emotional time for all concerned. But I'd like to thank Airedale International Air Conditioning with whom we've had a long association for their continued support. Now the hard work of applying for funding and asking the local community for support begins," says Joanne.

The charity is asking for help in the form of donations and sponsorship so that it can meet the target of opening on in June. 

Says Deborah: "I was glad to be able to help such a fantastic organisation and make life just a little easier for everyone involved. Moving is stressful at the best of times, but even more so when it is out of such urgent necessity. I'm confident that the new centre will serve visitors extremely well and, with such easy access from the M62, continue to provide the help and support that is needed. The West Yorkshire MS Therapy Centrewill benefit so many adults and children in the region."

The new MS Therapy Centre will be based in Unit 3A, Olympia Trading Estate, Gelderd Lane, Leeds LS12 6AL. Tel: 0113 250 4528



Saturday, 31 May 2014

Our London trip - May 27th to 31st 2014!

If you've read my post called London Bound you will know the background to mine and Martin's trip to London to see some West End shows.
This is a follow up post about our trip.....which was amazing! :-)

We stayed in three different Premier Inns! 
That was only because we wanted to split up the drive on the way up - I'm still not allowed to drive due to the Menieres  Disease :-( - and we stayed an extra day when we found another show we wanted to see!
We stopped on the first night, at Premier Inn Andover. There was no particular reason to stay here other than it being a couple of hours up the road and conveniently situated just by the A303!
We struck gold though!
When we stay at a Premier Inn or Travelodge we always try and remember to call them a few days before our stay to request a ground floor room or if they have a lift, a room right next to the lift! Most of the time this is fine and if I haven't booked a disabled room I'm normally asked if I'd like one. I was asked that when I called but was then asked if I needed a wet room! Normally the rooms just have a shower over a bath which is useless to me as I can't get into a bath! So being offered a wet room was fantastic!
Big tick for the Premier Inn Andover! :-)
We left there on Wednesday morning to travel on up to London. I was getting quite apprehensive because I was going to the theatre in my wheelchair which meant we were driving in to central London to find somewhere to park!
I will just mention a really handy book of maps that Martin found. It's called Blue Badge Guide to London and we got it from Amazon (but I expect there are other places you can buy it!) It's got very detailed maps which show you where there are parking spaces and car parks, how long you can stay there and how accessible they are. For anyone who is going to be going to London, who needs to park in the centre, I would say that this book is a great addition to have in your glove box!
Unfortunately we had booked to see a matinee on the Wednesday and finding a parking space in Central London on a work day was asking for trouble! Needless to say we didn't find a space but there was a car park just down from the theatre so we went in there. We needed four hours.....at £5 an hour though so that was ouch! 
The show we went to see that afternoon more than made up for it though! It's called The Book of Mormon and is written by Robert Lopez, Trey Parker, and Matt Stone. It is not recommended if you are easily offended but if not it is absolutely hilarious! I was lucky enough to have been given the cd for my birthday a couple of weeks ago and I'm so glad because it's brilliant! It is really good to see something so new and fresh in the West End and to see it doing so well......it is not easy to get a ticket for it! 

Talking of tickets, I made a point of phoning each theatre directly when I was booking my tickets because most of the theatres now have a dedicated special access phone line on a special phone number. It's not too hard to find the numbers, Martin just did a search and found them for each theatre. You will find that each different theatre will have their own policy when dealing with disabled. Most of the ones we booked gave us either a half price top tier ticket each or buy one full price and the Carer goes free, so not much difference really but it made a huge difference when it came to paying for them. 
We had fab seats for Book of Mormon, we were in the fourth row from the front, on the end. These tickets should have been around £150 each.......We paid £75 altogether! And I have to congratulate the Prince of Wales Theatre because, having worked front of house in the West End, we know just how difficult it can be getting a theatre that seats 1160 filled and seated in roughly 30 to 40 minutes! We arrived at the theatre and I needed to collect the tickets. This was done nice and swiftly, we were then passed over to a member of the front of house team, a young lady called Alice, who looked after us for the whole afternoon! She took us to the bar, came back and took us directly to our seats and showed Martin where to store the wheelchair. We had pre ordered drinks for the interval which Martin was going to go and collect, but just as the house lights came up, Alice was stood next to Martin with our drinks! She came and got us once the show had finished too and took us right out to the front doors. We really appreciated all that service, it's a theatre I would happily recommend as a disability friendly place.

That evening we had tickets to see Dirty Rotten Scoundrels. Unlike Mormon, we knew this show pretty well. We hadn't heard it for a while though so it was good to hear it again and to see it performed live. It has Robert Lindsey and Rufus Hound in the lead rolls. They were good and the whole show was well done but it didn't deliver quite the punch that Mormon had. Whether that was because we already knew it, I'm not convinced!
We had tickets in the Dress circle, I was transferring into the seat from my wheelchair again but access wasn't quite so easy for this theatre. We had to walk all around the back of the theatre to a side door......it's not the theatres fault, they all have to fall in to line with the disability regulations but let's face it, these theatres are hundreds of years old, so it's not an easy task. Everything was done very well though, nothing was too much trouble for them. 
We paid £70.50 altogether for these tickets which was about the price of one of the seats where we had been seated. It was busy but not sold out. 
We had managed to park our car a few streets away from the Savoy Theatre, on the road in a Pay by Phone space. This literally means you can park in the space but it is easiest to have the app so that you can register that your car is parked at a specific location. This was the first time we'd done this so Martin had to phone someone but once we'd done that we were able to use the app to extend our parking time and check on how much it was going to cost. We'd parked around about 17.20 but you can park for free after 18.30 as long as you have registered your car! It sounds far more complicated than it actually is.......honestly! ;-)
That evenings parking cost us £4.79......just a little different to the afternoon! Lol! ;-)

Just one thing that I meant to mention was about the congestion charge. We were driving all around Central London on a Monday to Friday which meant that the congestion charge would have to be a consideration for us. However if you are disabled and are a Blue Badge holder then you are able to register your car with them, you pay £10 and your car is covered for the length of time that your Blue Badge is legitimate. At the end of that time period you will be sent a reminder to renew your details. As long as you renew within ninety days of the old one finishing then you don't pay any further money, otherwise it will cost you another £10. You are able to have two vehicles registered under any one Blue Badge. 

On to Thursday and after the manic day on Wednesday we had a quiet day on Thursday with nothing planned until going to the theatre in the evening. It was actually a God send because I was already feeling pretty exhausted by this time. 
Don't get me wrong, we were having a blast it's just my body doesn't play ball when I'm doing more than usual! 
The show that we'd booked to see that evening was a play called Ghost Stories. We were intrigued by it because you couldn't find any information, about the content of the show, online. Their website isn't very forthcoming, all you see are photos of people looking totally terrified! They have a thing called Scream cam. It is much like a camera that is set up to take a photo on a roller coaster......it goes off at a certain point in the show and captures people at particular scary point in the show. 
Martin was quite taken with what the experience was about so we booked tickets for this play! 
It is on at the Arts Theatre which is just past Leicester Square. This is a lovely intimate theatre, so perfect for this show, and the tickets were really reasonable. The top price ticket was £39.50 so that was the total we paid as, once again, I paid for me and then my Carer......Martin, came in for free. 
The show is only about one hour twenty minutes too, with no interval, so a perfect evening out really! 
The major problem we had on this evening was that we hadn't left ourselves very much time to get into the centre of town, find a parking space and get to the theatre before the show started and of course when we reached the centre of London we couldn't find a parking space for love nor money!! 
We drove around for a good ten minutes getting ourselves tied up in knots and quite lost but there were no spaces whether they were disabled or to pay for! Of course we were getting quite irate....with London and with each other because we were cutting it very fine to get to the theatre in time. In fact Martin did say at one point that he thought we'd have to leave it and miss the play. 
We were both quite gutted but also annoyed at us for not giving ourselves enough time to find a space. And then my mum must have been looking out for us from up above because as we turned into St Martins Lane, which was just down from the theatre, we found an empty disabled parking space! We parked, got the wheelchair out and scooted up to the theatre with about ten minutes to spare.......thanks mum!! ;-)
We collected our tickets at the box office where we were told we'd need to pop back outside and just up the pavement to a door that the manager was going to open. We got back outside, onto the pavement where there were a group of people enjoying a pre show drink. I tapped one of them and just asked him to "Excuse me" He apologised and moved aside, once we were passed, I looked up at Martin to see if he'd noticed what I had......the guy I'd asked to move was none other than John Hannah, the actor! Even better looking in person too! ;-)
The play was fab, I found it quite scary, but then I fall for all the psychological stuff......the dark theatre, the spooky sound effects etc. I've worked in the business so I know what is real and what is engineered but my brain still likes to mess with me with things like that. Of course Martin is much more sensible and doesn't scare easily, so when I demanded his hand/arm for me to hold on to, I was given short shrift!! 
I won't be telling you anything about the play as I am happy to keep the shows secrets but I would urge anyone to go and see it, while it's still on, as it is a great piece of theatre.......just be warned if you are of a nervous disposition!! ;-)

And then here we were already on to Friday our last full day in London! 
Originally we were going to be coming home on the Friday having seen the three shows we had chosen to see with the money from Dream-A-Way but Martin happened to come across a show that is very close to both of our hearts and it was being performed in London while we were there! 
Martin and I along with some fantastic friends of ours have put on three concerts, over the last ten years, to raise money for the MS Society South Devon Branch. We have raised over £6000 by doing them! In 2004 we did a show called Closer Than Ever by Richard Maltby Jnr and David Shire. This involved four singers, a pianist and a bass player. In 2007 we put on a show by the same people but called Starting Here, Starting Now and in 2010 we put on Closer Than Ever again but we had seven singers this time! 
Martin was first introduced to Closer Than Ever when he was at drama school and it made such an impression that it stayed with him ever since. It had always been a dream of his to perform the show at some point! Of course this is how I found out about this wonderful piece of work and like Martin, I really thought we should perform this somehow and we managed it......twice and because of that it means a lot to us but although we had performed it neither of us had actually seen it done before! 
So when Martin came across the fact that it was being performed in London at the same time we were going to be there, we just had to get tickets.
It was on at the Jermyn Street Theatre, which is one I hadn't heard of. I rang them to ask about disabled access and I was glad I did! The theatre is actually in the basement of the building and the only access is down a flight of stairs. The lady who spoke to me was great though, she explained it all to me and checked to see if I could transfer and walk down the stairs etc. She explained that if we got there at 7pm, it started at 7.30pm, then they would store the wheelchair for me and give me any assistance I needed for getting down the stairs! She also said that once I was down in the foyer, they would keep the doors shut but let me make my way into the auditorium and get seated before they would let anyone else in! It sounded like they had everything covered so we went ahead and booked tickets for it! 
On the Friday we actually gave ourselves loads of time to get into the centre of London and to find a parking space. We didn't want a repeat of the previous night! As it was the Friday night traffic wasn't too bad and, of course, we found a disabled space on the end of Jermyn Street, just about 50 yards away from the theatre........it couldn't have been more perfect or stress free to find it!! 
The theatre staff lived up to their expectations! Because we had been able to park so close I hadn't needed to take my wheelchair which was really handy as there wasn't really anywhere for it to go! You arrive at the theatre and immediately have to go down a flight of stairs. The lady I had spoken to had been looking out for us and true to her word she cleared everyone to enable me to get down the stairs safely. Once we were down there she took us through to the seating area, she had booked us the most convenient seats which were on the end of a row. 
The auditorium and stage area were tiny.......very intimate! It only holds 70 seats and the front row is literally on the edge of the performing area, but that was perfect for this show! 
When you know a show so well, it is very difficult not to sing along with the songs but Martin and I were very good and we just sang them in our heads!! It totally lived up to our expectations and was great to see it being performed. I got a little emotional at the end because the show means a lot to us and it just touches me so much!

So that was it! :-D
We returned to the Premier Inn at Heathrow, which was the cheapest of all of those we'd stayed in but probably one of the nicest too! And because we were out there it gave us a little head start on our journey home! I dislike London a lot since becoming disabled but if you take the time to plan and prepare it doesn't have to be a city to be avoided! ;-)
As always when we have been away, it took me about a week to get over our trip and although I got very frustrated and fed up with how I felt and how tired I was, it was totally worth it! We had a fabulous time and are so grateful to the Dream-A-Way charity, what they did for us was amazing and we will remember it for a long time to come! 


So, until the next time! :-D
XxXxX