International LDN Awareness Week 19th – 25th October
Monday sees the start of International LDN Awareness Week. There’s a conference being held in America. The publicity so far has led to enquiries from some doctors wishing to join the LDN Research Trust’s list of prescribing doctors. It’s a great move forward and hopefully many more good things will come from this week. Leaflets are being dropped around Scotland (the country most affected worldwide by MS) and 6 counties in the UK also. If you haven’t already signed the petition and spread the word, please do so 🙂 Remember – LDN has the potential to possibly help other medical conditions; not just MS.
The LDN Research Trust is looking for volunteers around the world to help link all the countries and all the people taking LDN together to give a united voice. You can register interest by clicking on this link and clicking the ‘volunteer’ box: www.ldnresearchtrust.org/log_in.asp
Easy Fundraising
I raise money for the Revive MS Centre in Maryhill in Glasgow (they do amazing work and are very helpful and friendly) via a website – http://www.easyfundraising.org.uk/ The website lists thousands of online retailers such as: Amazon, ebay and the Apple Store. There’s no extra cost to you – the retailers pay a percentage of what you spend in each transaction (usually a couple of percent). It doesn’t sound like much, but it soon adds up and is such an easy way to raise funds.
There are lots of charities listed and you can choose which one to support, so even if you don’t want to support the Revive centre, you may wish to look and see if your chosen good cause / charity is listed and you can raise funds for them. All you have to do is log in to easyfundraising and follow their link to the retailer you wish to shop with and they do the rest.
It’s such an easy way to raise money for your chosen charity / good cause, and you do it by shopping!! What could be better?!?! If we purchase something for work via the company credit card, I make sure to go to the website via my easyfundraising account and the donations soon add up; especially if it’s an expensive item. There are also some great deals from retailers for easyfundraising account holders.
Petition – please sign!!
A petition is being sent to Downing Street asking for NHS trials into LDN and the effect it has on MS. The petition closes on the 23rd November 2009. Please sign the petition online and ask all your family members and friends to do the same. The more signatures, the more chance of trials being done and the full possible benefit of LDN being realised.
Relapse
Suffering from a bit of a relapse at the moment, hence there’ve been no posts. I’ve felt it coming on over the past couple of weeks, but it started in earnest last weekend and the dr has signed me off work at the moment. Luckily it isn’t extremely acute, but it’s rather bad! Walking like a robot and all the usual joys! Off to the specialist again and to see my nurse. The sooner I get LDN, the better!
On a positive note, bought a few funky pairs of leg warmers at the weekend to keep the legs warm in the winter and help the cramps 🙂
Not feeling up to writing a lot at the moment, but I’m going to add some info about LDN shortly in another post. Apologies if I’m preaching to the choir!
Bumped up…….
I’ll be having the consultation sooner than I thought – the lovely staff at the clinic called me and offered a cancellation slot for the 27th October. Can’t wait!
First Hurdle
Received notification of my appointment today – 26th November!! Bit of a longer wait than I expected and rather disappointed, but LDN’s in high demand, and I’m sure there are many that need it more than me. There’s a possibility of a cancellation in October, fingers crossed!
On the positive side, it isn’t completely cost prohibitive – £120 first consultation, £80 for subsequent review consultations, £15 per month for LDN at pharmacy, and £10 rx administration fee. If it works, it’s more than worth it to have my life back.
Linda at the LDN Research Trust was a great help in advising where I could obtain LDN in my local area and giving me the clinic contact details. http://www.ldnresearchtrust.org/
At the moment I’m sticking to my gluten free diet and a huge variety of supplements and vitamins. Going to attempt to grow my own chillies and herbs tonight for the yummy gluten free recipies I’ve found. Lots of fresh fruit and vegetables and keeping off the gluten seem to have helped a bit with the fatigue and ‘stomach problems’. Invested in a bread maker and now have gluten free bread that looks, tastes, and behaves like bread!!
Starting Tai Chi on the 8th; hopefully that’ll help with the leg stiffness. I’ll keep you posted!
On a completely different note, I took the Strengths Finder 2.0 assessment today for work and the results were surprisingly accurate! Apparently, these are my top 5 strengths:
Ideation
People who are especially talented in the Ideation theme are fascinated by ideas. They are able to find connections between seemingly disparate phenomena.
Learner
People who are especially talented in the Learner theme have a great desire to learn and want to continuously improve. In particular, the process of learning, rather than the outcome, excites them.
Maximizer
People who are especially talented in the Maximizer theme focus on strengths as a way to stimulate personal and group excellence. They seek to transform something strong into something superb.
Command
People who are especially talented in the Command theme have presence. They can take control of a situation and make decisions.
Futuristic
People who are especially talented in the Futuristic theme are inspired by the future and what could be. They inspire others with their visions of the future.
You learn something new every day! 😉
The Story Begins………
I’ve never blogged before, but felt this might help some people by relating my experience with LDN.
I’ve suffered from rrms for 2 years now, with day to day symptoms gradually getting worse and a severe bout of ON last year being the worst yet. I’ve now decided to try LDN after all the wonderful stories I’ve heard about it as I don’t want to go down the traditional steroid route.
So far: I’ve requested an appointment at a private clinic where the consultant will hopefully agree I’m a good candidate for LDN. Excited and nervous at the same time! Just waiting to hear back when they can fit me in.
I’m going to use this blog to keep an account of my experiences both with ms and LDN and hopefully have good news to report!!
Me, My MS and I 