Hi all I hope you are all keeping well and have had a good festive period and a great start to the New Year.
I know I haven’t been around in a while but I have just felt the need to take a break from everything.
In the recent months I have been determined to move my focus onto something other than Dystonia. For a while now it has seemed more and more of my life revolves around this condition to the point where its dominance becomes overwhelming. Its here I find disregarding what I can of Dystonia a better coping mechanism so don’t think I’ve been ignoring you guys!
Since my last blog a few things have happened. From a medical point of view the progress has been slow but steady!
I’ve began that all important but nerve racking move over to the adult team now I’ve become 18. It’s been a move I have been dreading for a while if I’m honest but it’s one I’m going to grab with both hands and embrace.
I think it’s because it took such a long time to find a medical team that were willing to help me. That listened to what I had to say and understood my difficulties and frustration. I’m now at a place where I finally feel happy, confident and settled with my care and how it’s all moving forward, that the prospect of having to start all over again with a new team is daunting. But I suppose, as the saying goes, a change is good and hopefully it will lead to bigger and better things.
I’m also making progress with DBS. Just before Christmas I took another trip out to Bristol hospital to have a further programming session. It was my 3rd tweaking session since the surgery and it couldn’t have come quicker as no improvements were seen from the previous setting.
It was arranged for me to see my neurologist during this appointment too. Not only was I due a follow up with him anyway, I was also wanted to discuss other methods of treatment I could try whilst in the process of trailing different DBS setting.
As I mentioned before my feet have now become fixed due to the severity and frequency of my spasm, and on a few occasions they have turned in even more whilst in a spasm.
My biggest concern is that they are going to get progressively worse as time goes on. Corrective surgery seems to be my only choice now to regain back enough function in my feet to enable me to stand. However I worry if preventative measures are not put into place even surgery may not be an option, so I thought I’d enquire about Botox as I have heard it’s an effective way to treat this type of problem!
After a brief discussion my consultant preferred we wait until at least 12 months post op before trying additional treatments alongside DBS, as he would like to see exactly what relief I was to gain from DBS alone which was understandable. However he did say it’s something we could look into in the near future.
Since then I’ve been in talks with my new adult Physio Carol, to ask if there’s any type of splint or something similar I could try in the mean time. She’s managed to arrange an appointment for me with Orthotics to talk about possible options at the end of this month which I’m looking forward to. In general she is also in the process of organising a block set of hydrotherapy sessions to help me with my movement which I’m also excited about!
I have also, in the last few months re-joined the gym and now attend an hour’s session twice a week. I not only joined to improve my general fitness levels and to tone up but because it’s something I thoroughly enjoy. It’s given me another focus and has had a brilliant effect on my mood and energy level. It’s also been a great way of meeting new people!
I’m so lucky to have an amazing personal trainer who is so understanding and easy going. She’s been willing to adapt particular exercises to suit my needs and has worked me hard and kept me motivated. I love the fact she never rules any activities out because of my predicament (obviously in reason) which for me is important as it gives me a great sense of normality.
I’ve had a great start to 2014 and I hope better things are to come. I am determined to achieve everything I have wished for and to make this year my year! I want to look back this time next year and say 2014 was the year I put Dystonia in its place and show it exactly what I’m made of!