Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘support’

My first RDA Lesson

There are no words to describe just how over-joyed I was yesterday. It was a day of sheer bliss!  Yesterday I had my first R.D.A (Riding for the disabled association) lesson. It had been 5 years since I had last ridden (when I was able-bodied), and I was desperate to get back on a horse! I must say that the volunteers who run the group are amazing! They are such caring, upbeat people and it is such a vibrant environment! You could not ask for a more helpful or nicer bunch of people.

As I am in a wheelchair, the volunteers had to be slightly inventive, as I could not mount a horse in the typical way. Instead, once I was on the mounting block, two of the volunteers lifted me by my knees, up on to the horse, so that I was sitting side-saddle. I then had to swing my Dystonic leg over the horse’s neck, so that I was sitting correctly. I was thrilled that I had managed to get on!!!! As I knew there was a very good chance that I may not be able to.

I then had 3 volunteers stay by my side throughout the lesson. So that if for some reason my dystonia played up or if I had a seizure, they would be able to keep me from hurting myself. I was expecting to only be allowed to walk in my first lesson, especially as we did not know how my leg would react. However I was in heaven, when I heard the instructor call my name and tell me to go for a trot!!!!! At first the trots were short, so that we could establish my strength, however throughout the lesson they got longer and longer. I could have cried with happiness. I have loved horses all my life, and started riding at the age of 5. Ten years later I had to stop due to injury. So you can imagine my joy at being able  to get on a horse again and then being able to do more that I expected!

I managed to do the entire lesson, which was incredible!!! To dismount from the horse, things had to get inventive again, as I was unable to do this in the typical manner. Instead I swung my leg over the horse’s neck again and sat side-saddle. Then with my arms wrapped round the volunteers, I let myself slowly slide down the horse to the ground. It was an amazing day! One that I will not ever forget. I cannot wait to go back next week for my next R.D.A lesson!

This is a picture of me riding Connie, just getting ready to dismount at the end of a fantastic lesson!

I also attended my support/research group last night. I really do love this group. It does a slight bit of meditation, free movement, discussion etc. To an onlooker, it would most likely look that we are all slightly crazy, however everything we do, I find leaves me feeling relaxed and peaceful by the end of the session. It was a perfect end to a rather heavenly day!

The battle for my leg

Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.

Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.

Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.

I feel so thankful for the support and love I get from my family and friends. Without them it would  be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!

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