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!

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 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! :-)

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 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! 


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