Category: January

Posted in Archive, January

My first RDA Lesson

Posted on by dystoniaandme

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!

Posted in Archive, January

Care Plan in Place

Posted on by dystoniaandme

 

Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.

My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!

My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are  triggered by extreme pain.

Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!!  Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!

Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!

Posted in Archive, January

The Battle against my Foot, the Doctors and my Brain.

Posted on by dystoniaandme

When you wake up in the morning, what do you? Do you mentally wrestle with yourself to throw back your warm duvet cover, swing your legs out into the unwelcoming cold, stand up and start your day? This is a simple task. One you do every day without thinking about it.

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other.  They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time  it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!

Posted in Archive, January

Crash Landing

Posted on by dystoniaandme

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.

Posted in Archive, January

Consultant News and Meditation.

Posted on by dystoniaandme

Yesterday evening I finally received an email from my consultant saying he would see me next Tuesday at 1pm! I am so happy, it will be such a relief to have the Botox done, so that my Ormandibular Dystonia will not cause me any pain for a few months. Another bonus is that when the jaw pain eases off, so do my Non Epileptic Seizures! I am going to have a word with him while I am there, about what I do when the Botox wears off next time, as I find it unacceptable to have to battle for so long to get seen!

Over the past couple of months I have read a lot of articles to do with meditation helping with Dystonia. In most cases stress aggravates Dystonia, so doctors often advise their patients to try to live a ‘calm and stress free life’. This is rather ironic, considering that Dystonia causes stress itself due to the pain it inflicts and its life changing nature. This is where meditation comes in, particularly Mindful Meditation. It is all about sitting or lying down comfortably (I know this is often the hard bit to do for Dystonia Sufferers) and trying to focus on the present moment, feeling calm and relaxed.

When I first heard about Mindful Meditation, I was not sold by it, I was very dubious as it seemed a bit ‘fluffy’. However after reading more into it and reading claims that it really did help keep  stress levels down which in turn calmed  Dystonia down a bit, I found myself thinking why not. I am at the point where I shall try anything, if it means that I can have some sort of slight relief from my Dystonia.

I ended up scouring Amazon for books on meditation, Mindful meditation in particular, until I found three, that not only looked like what I wanted, but had a lot of positive reviews as well. I brought Living well with Pain and illness by Vidyamala Burch, Relaxation for Dummies (also comes with a fab CD to guide you through your meditation) and Heal Yourself by Anne Jones (I am just about to start reading this one).

After spending a few days reading through Living well with Pain and Illness, and Relaxation for Dummies, I decided to try meditating for the first time last night. I put on the CD provided to help guide me through it. As it was my first time meditating, I chose to do the shortest one first. I must admit that I was pleasantly surprised. I had started the meditation in a lot of pain due to my jaw spasm, and was feeling rather stressed over it. However by the end of it I was feeling fairly relaxed. I was still in a lot pain, but I was not stressing  as much over it.

Research shows that after a few weeks of doing mindful meditation, that the brain actually shows a physical difference when scanned  The majority of scans show the stress section of the brain has actually shrunk, and the positivity section was lit up/grown. I am going to attempt to meditate twice a day for two months. At the beginning and end of the meditation, I am going to document how I feel and how my dystonia is. Then at the end of these two months I will compare how I am at the end of the ‘experiment’ to the beginning of it. It shall be an interesting and hopefully positive experience.

Posted in Archive, January

Today’s Support/Research Group and Dystonia Update

Posted on by dystoniaandme

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!

Posted in Archive, January

Visits from the Doctor, the Occupational Therapist and our MP

Posted on by dystoniaandme

Yesterday I was visited by my GP, my Occupational Therapist and our Local member of parliament. I found the visits interesting in their different ways. The first to visit me was my Occupational Therapist, she is an amazing woman, who does above and beyond what is required of her. She has looked after people who suffer from Dystonia before, so she has a good idea of what the condition is like. Upon being in the house for 20 minutes, and watching me have bad jaw spasms and many Non Epileptic Seizures, she could not believe that I had not been admitted into a hospital as an emergency case!

Next came my GP. My GP is lovely, he does try his best to cope with my condition, but he has never dealt with Dystonia before so has very little understanding of how to treat/cope with it. My GP came to do a home visit as my head has not been right since I hit it on New Years Day and because due to my new Seizures there was no way we could safely get me out of our house. He did the usual basic observations, e.g my blood pressure, my pulse and my temperature. All where normal except my temperature which was ever so slightly up. My GP had never seen my Seizures before, and I don’t think he had a clue what to do with them. After checking me over, he decided that my body was most likely just fighting something off and that was what was causing the new seizures, and the collapse the other day. He did say he would inform my consultant as well.

Now this is the bit I find interesting.  Compare the reactions of the Occupational Therapist who has seen Dystonia before, and the Doctor who has never seen Dystonia before. One thinks I need to be hospitalised as an emergency case and the other thinks my body just has a bug. I think these two very different reactions, are very interesting.

Finally our local member of parliament came to visit. This visit did not go as I had hoped, he listened, made noises in the right places and said he would right a letter. I’m not sure what I was expecting him to say but I had hoped for a more positive outcome than what did happen  The most interesting thing he did was freak when our cat entered the room. It seems that I am going to have to do more complaining myself. I plan to start by writing to the heads of the hospitals whose system have failed, and take it from there.

Living with Dystonia is never going to be easy, and I can only hope that I will be one of the 1 in 20 of us who randomly, for no known medically reason, go into ‘remission’. I plan to draw as much attention as I can to this condition, until someone in the NHS or government realise that their system is failing us!

 

Posted in Archive, January

The Battle Against My Neurological Demons!

Posted on by dystoniaandme

Today has involved yet another fierce battle against my Dystonia and my Non Epileptic Seizures. A battle which is still yet to be won. I try to defend myself against my neurological demons by sitting up as slowly as possible  attempting to use distraction techniques as I attempt each task, but so far my neurological demons are one step ahead of me, constantly ready to launch their next attack on my body.

I am spending most the day in bed at the moment, to recover from Tuesdays incident. Just to get up to go to the toilet is almost impossible. 9 out 10 times just by sitting up a seizure will happen, this then means I have to try to sit up again, which is rather painful due to the sprains and soft tissue damage caused by Tuesdays fall and seizures. Once I have won the battle to get up, my mother and one of my siblings have to help me walk to the toilet and back. This can take a long time in itself as if I collapse and seize on the way there, I find it extremely hard and painful to get back up.

We  are still unsure of how many seizures I am having, as some of them I am completely unaware of. My body hurts a lot but my head is the worst. I feel dizzy often and have a constant feeling of there being too much pressure in my head. I feel like someone needs to put a needle into my head and drain out whatever is causing it. It is a rather painful feeling.

This battle for control is very physically and emotionally draining. I desperately want back the control of my body, but my Neurological demons seem to have other plans for me at the moment. I am hoping that my consultant (when he bothers to get back to us) will be able to provide us with some advice.

 

Posted in Archive, January

Emergency Hospital Trip

Posted on by dystoniaandme

Yesterday  was an extremely odd day. To be honest I remember  nothing of it! Apparently as I was mixing up my medicine in the kitchen, I collapsed and fell on to our tiled floor and then went on to have a hell of a lot of Non Epileptic Seizures along with extreme Jaw spasms, with mere seconds of consciousness between each one. Due to the fact I really hit my head and arm hard when I collapsed, I was rushed off to hospital in an ambulance. Whilst at the hospital I was monitored for hours and had my hip x-rayed (thank-fully I had not broken it). It was while we were at the hospital that my mother noticed that I was also having Non Epileptic seizures which weren’t taking on their usual form. I was staring blankly, and not responding when my mum spoke to me or when she waved her hands in front of my face. This is slightly concerning as it means that I may be having more Non Epileptic Seizure than we are aware of.

Today I have woken up feeling like I have been run over repeatedly by a truck. I am therefore spending the day medicated to the max, and in bed. The thought of moving is not one I welcome. This incident has given me yet another issue to talk to my consultant about as it is getting beyond ridiculous now.On the bright side of things, whilst my Jaw Dystonia is still playing up, it is not to bad today, which is a relief.