Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘research group’

Amazing Progress!

Today has been truly wonderful! I had my third R.D.A lesson, and I made so much progress today. I really shocked myself! In the last two lessons I have had, I have had a leader and two volunteers on either side of me, so that they can catch me if I have a Non Epileptic Seizure whilst on the horse. However at the start of my lesson today I only had a leader, and by the end of the first ten minutes it had been decided I did not have a need for a leader!!! This was fantastic and I was extremely happy.

We spend the majority of the lesson in trot, and practising changing the rein in trot etc. This I adored, as I was being allowed to do even more than I had done in my previous lessons. I normally just do sitting trot and I just try to stay as still as possible in the saddle, however as my Dystonic leg was behaving rather well today, my instructor and I decided that I should give rising trot a go. I was slightly nervous at the idea of it, as I did not know how my leg would react. It turned out that I had no reason to worry!! I put as much weight as possible through my left leg (the working one), and started doing a slightly lop sided (but who cares about that) rising trot. To say I was in heaven would be an understatement. I felt so carefree and alive. I could have cried with happiness when I realised that all my leg had done in reaction was to twist sideways!!! This was such amazing progress and has given me so much confidence!!

There are not enough words to describe how much I love riding!! I treasure every single second of it, and feel very lucky to have the opportunity to ride among such a vibrant and supportive group of people.

I also attended my support/research group. As usual I had a laugh with the group, and really enjoyed the session. I had also made progress in the group, by being able to do some of the relaxation methods more successfully than I had managed previously. I left feeling very relaxed and over-joyed from having such a great day, full of amazing progress!

 

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Yesterdays R.D.A Lesson & Support group

Yesterday I had a lesson booked with the R.D.A, I was a bit nervous about this due to the new tremor in my leg. I had emailed my instructor in advance to let her know that it may be slightly more difficult than usual to get me on. Her reply made me grin “Tremor or no tremor, we will give it our best shot”! She stuck true to her words, they gave it their best shot and managed to get me on! I hopped up the mounting block, then with my arms round two volunteers shoulders they lifted me up on to Connie so that I was sitting side saddle, I then swung my Dystonic leg over Connie’s neck and slid my feet into the stirrups.

After about a minute of having my feet in the stirrups my right leg decided to spasm, it shot out sideways and upwards. The volunteers and my instructors remained very calm and Connie did not even notice. Thankfully it was not a long spasm, once it had passed we agreed that until my leg had settled down completely, I would ride without the stirrups. I was completely fine with this, and happily rode round without them. After a while, when I was certain it was OK to risk putting my feet back in stirrups, I did so, this time my body did not react.

My riding instructor does fantastic lessons, and I was allowed to do a lot more trotting this time. We did trotting in general, trotted in and out of cones and over poles, it was complete heaven! The three volunteers that stayed beside me, kept saying that you would never know I was disabled if you watched me ride, as I sat so well and had good control. I must admit them saying this really made my day! I have to have three people around me at the moment when I ride, due to my Non Epileptic Seizures, as I only had my last one a few weeks ago, so we have to play it safe.

I cannot put into words that happiness that riding gives me. I literally sit and grin the whole time I am riding, taking in every magical second of it! I cannot wait until next weeks lesson!

Last night I also attended my support/research group. I love these meetings, they are so mad and positive that I just there and smile. Despite both my leg and arm playing up whilst I was there, I had a fantastic time. The group is extremely supportive and I find that the different methods we are taught for coping with pain are extremely helpful.

Overall yesterday was an absolutely brilliant day. It was so worth the aches I have today. Despite the aches, if you put a horse in front of me now, I would still try and get on!

 

Crash Landing

It would seem that ever since the first of January all I seem to do is either fall over due to a leg spasm, or collapse due to a seizure. Yesterday at my support/research group, I had a Non Epileptic Seizure, triggered by pain from my jaw, whilst sitting in my wheelchair. Now I had always thought that if I had a Seizure whilst in my wheelchair I would be fairly safe, as I was in a ‘contained’ environment. Turns out I was wrong. I regained consciousness to find myself on the floor. My seizure had shaken me out of my wheelchair onto the floor. Luckily the people around me acted as quickly as they could to make sure I didn’t do myself any harm, whilst the others fetched my mother to find out what to do. Thankfully  other than really bruising my coccyx, and generally being a bit achy, I was fine.

My Basal Ganglia, however, seems determined to inflicted pain on me. I have lost count of how many times I have fallen over because of my leg Dystonia today. My foot flips over and my leg spasms backwards, or sometimes up in the air, and I end up on the ground. This means that who ever is helping me walk also ends up on the ground too. I think my leg has been so bad today in reaction to lasts night collapse. Due to yesterdays collapse and today’s many falls, my body is really rather sore. I feel like I am covered in bruises from head to toe. Tomorrow I plan on resting my body, to give it time to calm down, and to meditate.

Today, when I wasn’t falling over, I wrote a list of a questions for my meeting with my consultant on Tuesday. I want to go as prepared as I can be, so that the situation I have been in with him for the last two months, does not ever happen again.

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