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

Posts tagged ‘physiotherapy’

An Exciting Month!

This month is full of opportunities that I never expected to experience. Towards the end of the month I’m going to Amsterdam for a few days with the university, followed by three weeks as an inpatient in the Royal National Orthopaedic Hospital Stanmore. It is an exciting time to say the least.

The publishing trip to Amsterdam shall not only be an insightful opportunity for my course, but shall also allow me to explore how my body will react to travelling. Visiting other countries was a luxury, that when I first became ill in 2012, I thought would have to be swept under the carpet and not thought about again. However, in comparison to four years ago my bundle of conditions are extremely well controlled, instilling me with the confidence to explore this opportunity further. To help ensure that I am as safe as can be my neurologist agreed to administer my Botox a week early to knock unwanted spasms on the head.

Back in 2013 this was me; reliant on a wheelchair with monthly ambulance trips to A&E.

Three years on I’m incredibly lucky to have a regime of medication and injections that enables me to live life to the full. I still need my wheelchair every now and then, but it is no longer a necessity for daily life.

12575854_826427370816377_1942932212_nLess than a week after I return from the trip it is off to RNOH I go for three weeks of intensive rehabilitation for my EDS Type Three. I have been on the waiting list for this stint for almost a year and a half, so I’m a bag of excitement and nerves in anticipation for my admission. My time there should enable me to carry on life with better habits when it comes to using my joints, hopefully that will mean less over extending, and help strengthen the weaker muscles and ligaments.

During my interview for the treatment we discussed what I would like to focus on strengthening, my first answer out of the several I was allowed to give, was my jaw. The combination of EDS and Dystonia means that my jaw comes out of place extremely easily, which inflicts a severe amount of pain. Knowing that jaw physiotherapy will be possible is huge news for me, as this issue is the main factor behind my seizures. Anything that will decrease the amount of subluxations and dislocations for my jaw has the potential to make an incredible difference to my life.

Needless to say I’m counting down the days to go!

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Hydrotherapy

Today I had my first Hydrotherapy session, this was the first in a course of six. This morning I found myself feeling a mixture of emotions. Part of me was incredibly excited, I previously had hydrotherapy back in 2009 to treat Complex Regional Pain Syndrome, and found it to be very helpful, so I know just how beneficial it can be. However I was also slightly nervous, I could not help but wonder how my quirky body would react to the therapy now. Would it set a seizure off? And if it did how quickly would the staff react? The one positive being, if I had a seizure, that the hydrotherapy takes place at my local hospital and the A&E staff know me very well.

The session could not have gone better. The pool was wonderfully warm which helped relax my rather achy muscles. Having the water support my joints whilst I did the exercises was great as while the water in itself provided a challenge, it also meant I could not hurt myself. For example whenever I twitched in the pool the water provided a resistance to my arm, slowing it down slightly and supporting it, which meant I didn’t hurt myself like I normally do. We had lots of laughs during the session, with my spasms ending up with me splashing my physio repeadedly in the face, and the floats that we had been using during an exercise going flying across the pool. It was great for it to happen in a safe, pain free enviroment!

Below I have put a sneaky photo (I was trying to avoid capturing other patients) that I took at the hospital earlier, it lists some of the benefits of Hydrotherapy. This includes pain relief, and reduction of muscles spasms. It shall be interesting to see if it will help with the spasms I experience! If you have had Hydro, feel free to drop me a line I’d love to hear your experiences.
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Reflection

When I saw my personal trainer Beckie the other day she pointed out to me that she had trained with me for a year now. Reflecting together on the progress I’ve made in the last year was a real eye opener. I think sometimes I forget just how much I have improved, I allow myself to become absorbed in the pain and the spasms. I focus on fighting constantly against the Dystonia. When I met Beckie I could barely stand for even twenty seconds without my legs spasming, my whole body out of control, I was completely reliant on a wheelchair. Lyme disease was eating away at my life and I was fighting what felt like a losing battle.

I remember the first time Beckie came round; it was a meeting between herself, my mother and I, to discuss what exercises I could do without setting a seizure off. Although our aim has always been to not trigger a spasm, I’ve always made it clear that if I spasm, I don’t mind. Let’s pause, wait for it to pass and then carry on. I’ve carried on with my mind-set that my brain will learn (I understand that this is unlikely but a girl can hope)! When we began it was completely baby steps, learning what my body would cope with and what would cause it to throw a complete fit.

Now, after being on Lyme treatment for a year, and finding a regular Botox regime that works for my Dystonia, I am capable of so much more in our sessions. Some exercises still cause my body to go into spasm, but I apply the same method as I did a year ago, pause, wait and then continue. It works every time. Beckie has helped me strengthen my joints after my body successfully caused a lot of damage to them. I will never forget the look on my physiotherapist face when she first assessed my legs and realized the damage the spasms had done to the ligaments. I’ve gone from not being able to stand for more than twenty seconds to being able to walk. I admit I need knee and ankle splints to be able to do so, and sometimes I need walking sticks, and if I’m having an awful day I rely on my wheelchair. BUT I have made so much progress. I don’t reflect often enough. Looking back on this time last year I cannot believe how far I’ve come. I look forward to the progress I can make in the months to come. Learning to manage these conditions one step at a time.

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Aside

Positive Week

The other day I wrote about how negative the majority of my appointments have been recently.I am thrilled to say that this trend has not continued recently. Last week I attended a physiotherapy session, I had gone prepared to do battle and expected to be discharged at the end of the appointment. I could not have been more wrong! The appointment on a whole was extremely positive and uplifting. I made such progress last week that I could not believe it, I don’t think my physiotherapists could either. I wore my splint for the entire session which enabled me to do more as my spasms are contained to a degree.  My physiotherapists have not run a full session with me wearing my splint before, and I think they were quite amazed at the difference it makes. We are hopeful that the upcoming adaptations to my splint which in theory will contain my spasms further, will enable me to walk properly as my foot should not be able to turn upside down.

I met with the Orthotics today to discuss the adaptations that are going to be done on my splint. The original plan had been to make one that would fully encase my leg, however this had several risks to it. At the moment several of the straps on my splint are slightly elasticated, this is great for comfort but when my foot spasms it means it can get into pretty much any position it feels like. Instead of going for a full on enclosing splint they are going to swap the current straps for more restrictive ones with no give to see if this makes a difference. Hopefully it will, and if it doesn’t then we go back to the original plan. I also had splints fitted to both of my knees while I was there on the request of my physiotherapists. The idea behind this is that it will prevent my knees bending back as far due to my hypermobility, and they hope that this extra support may lessen the spasms in my feet. They have no idea if it will or not but it is worth a try.

Luckily these knee splints fit under my trousers as they are rather bulky! However to show you all what I am on about I have taken a photo with them over my trousers.

 

Exasperated

This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness.  On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.

When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.

I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.

I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.

 

Leg/foot Dystonia

Instead of working steadily down the body for my blog posts I decided today to go straight on down to the leg/foot. This may have been influenced by todays spasms. For me, I class my leg/foot spasms as one of my most debilitating symptoms as it has resulted in me being unable to walk and having to use a wheelchair. In young adults and children Dystonia in the leg/foot area can be a sign of generalised Dystonia. Whereas for older adults (usually 30+ ) it would be more likely that it would be just in that area, this is known as focal Dystonia. I used to always walk funny, often falling over, and kicking my ankles open. I would often say “my legs just won’t do what I want”, at the time it was laughed off but now I often wonder if this was the first sign of the condition.

Dystonia is currently not a curable condition, therefore treatment is focused more on managing the current symptoms as well as possible. The most effective treatment at the moment involves regular Botox injections, where the injections are given depends on the spasm. Some people find that they need a combination of medications such as muscle relaxants as well as Botox injections . Physiotherapy is thought to be of use as well in a number in a cases, this is something I am starting to try along with Botox and muscle relaxants.

 Below are two photos of my foot/leg spasms.

Disappointed & Disheartened

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

Frustration With Lack Of Help

Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.

Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.

I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help.  We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.

I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient  Neuro Physiotherapy service that I could be referred to  This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.

Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.

Aside

Upcoming Hospital Admittance

On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that  I shall come away from my short stay there with a better idea of how to cope/work around my spasms.

I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.

I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.

Care Plan in Place

 

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!

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