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

Posts tagged ‘riding for the disabled’

Positive Days!

Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.

I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.

Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.

I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.

I am really happy at that moment  and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.

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Blissful Days!

I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.

I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.

If you would like to help me raise money for the Dystonia society please click on this link which will take you to my just giving page http://www.justgiving.com/Rebecca-Moller1 .

And if you would like to join in with the Go Blue for Dystonia movement then either dye you hair blue or wear something blue and take a picture of it and post it on the following Facebook event page link https://www.facebook.com/events/450399491712134/?fref=ts

 

Trip to the Consultant

On Tuesday I went up to London to see my consultant, I went armed with a notepad full of questions. I must say that I was extremely pleased with how the appointment went. I felt that my consultant listened to all of my concerns and really wanted to help me.

After explaining to my consultant all of my new symptoms and how they have resulted in an increase of Non Epileptic Seizures due to the pain, my consultant had a couple of ideas. First of all, after demonstrating to him how my neck spasms (it goes down towards my right shoulder, whilst rotating left, so I am in a sort of diagonally skywards position), he decided to administer Botox to my neck.

He administered the first lot of injections to my jaw to help relieve my Ormandibular Dystonia, this was relatively painless. He then went onto my neck. I expected this to be fairly painless as well. I was wrong. It was painful, I feel sorry for my mums poor fingers that I was already squeezing as I really do not like needles that are aimed at me. However I would rather have a couple of seconds of discomfort than hours of a hideous neck spasm.

My consultants second idea, is to introduce Clonzepam into my medication cocktail. At first I shall only take it when I think I am about to have a seizure. If that does not work then I shall start taking it nightly. His theory is that when I am in severe pain, my body goes into fight or flight mode and my bodies way of fleeing is by going into a Non Epileptic Seizure, therefore the medication should prevent my body from feeling like it has to fight or flee.

We discussed the role of dopamine, and he feels that my Dystonia is not dopa-responsive, so does not want to do a trial of levadope. Whilst this is disappointing, I can understand why he feels this, I know that I was only hoping I could try it, so that if did work I would be able to return to university in September. However I am not totally giving up on this idea. From the way my consultant spoke I was given the impression that many treatment avenues are closed for me because of the Non Epileptic Attacks. I am hoping that if the Clonzepam does its role right and stops them, then my Dystonia will be able to viewed in a light that is not tainted by them, it is at that point that I shall bringing up trying Levadope again.

For now I am going to sit back and count down the days to April 18th, when my riding lessons start-up again. I cannot wait to get back to it, its my happy place.

 

Today’s Support/Research Group and Dystonia Update

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

Happy Days

The last few days have been full of positivity! Which has put a smile back on my face. The other day I paid my local riding stable a visit. Once a week for a couple of hours they run lessons for the disabled. They assessed me whilst I was there and have said that after Christmas I can join! I was of course extremely excited. I then watched one of the RDA lessons, so I could get a feel for how the lessons were run, I had a smile across my face the whole time. I love horse riding! The only issue that the instructors can see at the moment, is getting me on the horse without my leg going into spasm, however they have thought of a couple of different ways to get on me. Personally I’m hoping that my sheer determination to back on a horse will enable me to do it perfectly :p.

Yesterday my jaw spasm relaxed partially!!! It had relaxed enough for me to eat solid food and talk more clearly, only my lip remained odd. In the evening I had my usual extreme Jaw spasms and seizures, which had worried me that I would wake up today with my jaw back in spasm, but I need not have worried, today it is still relaxed. I could dance with happiness!

 

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