Tag: dystonia

Posted in Archive, September 2014

Excitement and Nervousness

Posted on by dystoniaandme

Living with Dystonia and my other medical conditions guarantees that no two days are ever the same. I learnt that a long time ago. Yet two years into it it and it can still shock me. The difference in me when you compare last Sunday to today is astounding! Last Sunday feels like a life-time ago, not a mere week. Last week I was confined to my bed all day, so ill that a member of my family was with me all day, today I am pretty much pain free, hardly spasming and enjoying every second of it.

Last week it was as if we had taken me off all my medications. I was blind, every part of me was spasming. My jaw spasmed to the point it eventually dislocated! There are not words to describe the pain I was in, or the pain caused by attempting to swallow pain killers and muscles relaxants whilst in that state. At points the only way I was able to communicate to my mum was by twitching a finger to let her know I was conscious but my body was out of my control. It was hell. I have not had a day that bad in such a very long time.

Today I have no pain medications in me, I am able to move about without setting another part of my body off. The only parts of me that are daring to play up are my neck and jaw. This is not surprising as my Botox injections are due Tuesday. However considering that fact I am feeling extremely happy and lucky that they are not spasming more than they currently are. Its as if Benedict is still recuperating from last weeks attack.

I have started treatment for my Chronic Neurological Lyme Disease now. It shall be extremely interesting to see which of my spasms were due to the Neurological Lyme, and which are caused by the Dystonia. Hopefully over the next few weeks I shall start to see improvements and get an idea of what spasms I shall have to live with and which ones I don’t. I’m extremely excitement but nervous!

 

 

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Posted in Archive, September 2014

Glimmer of light at the end of the tunnel.

Posted on by dystoniaandme

I finally feel like there is a light at the end of what felt like a never-ending tunnel. Last week I attended an appointment at a local private hospital to see whether they would treat me for Chronic Neurological Lyme Disease. Whilst they have said no to giving me IV treatment they have offered me an oral antibiotic pulse protocol which they think will cure me of Lyme. They say it has cured others similar to me before, so I have high hopes.

Now that they have said they will treat me I feel like my stress levels have plummeted, though I must admit they did soar back up when I saw the price for treatment. I have no idea how I am going to afford it, but at the end of the you cannot put a price on health! Being free of some of my symptoms and having to battle with my body less seems like something out of a fairy tale to me, yet now it is just at my fingertips! Having less pain, less to contend with would be bliss.

I have been lucky that my Botox has worked rather well since I last saw my neurologist. So I have not had to cope with my Dystonia stressing me out at the same time. Today is the first time I have woken up and thought ooh actually my jaw and neck don’t actually feel quite right. Not that I am complaining, with only two weeks to go until my next lot of injections for it to only start twinging now is fine by me as the muscle are not distorting yet.

For those of you who are unaware there are currently two Dystonia online petitions going around. One is US-based the other UK. However it does not matter where in the world you are you can sign either one or both, and I urge you to as it will help make a much-needed difference by boosting awareness of the condition!

1) https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

2) http://www.change.org/p/uk-government-raise-awareness-about-dystonia-an-illness-which-cannot-be-cured-and-97-of-doctors-dont-know-about-it-properly?recruiter=45857151&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition

Posted in Archive, August 2014

Positivity Promising Proactive Prospect

Posted on by dystoniaandme

Its been a few weeks since I blogged and it is hard to know where to start as so much has happened. I have had hospital appointment after hospital appointment, and I find that I am still trying to wrap my head round them all. I’ll keep todays blog brief and just mention a couple of appointments.Thankfully though my Dystonia has not been too bad as of late, my legs are tolerating my splints with more ease which is making life and physiotherapy much easier.

Last week I had an appointment at the Royal National Orthopaedic Hospital to see a specialist to do with my Joint Hypermobility syndrome, she has decided she wants me put on an outpatient program there building up towards being put into a 3 week intensive rehabilitation program. It was extremely a positive appointment that has left me feeling very optimistic. Joint Hypermobility Syndrome combined with Dystonia means my body can end up in some weird and wonderful positions, which can be rather painful, so I am hoping this program will give me some coping tools.

On Wednesday I attended a local private hospital that treats Lyme Disease to see if they would consider treating me. The Dr was rather lovely and very thorough in her examinations which left me feeling quite confident. They took blood to test for a number of things including Lyme Disease, and explained the treatment process if the results they needed came back. Having treatment through this hospital will be extremely expensive however you cannot put a price on health. Lyme disease has robbed me off so much of my life, and in many cases literally takes people lives, I don’t plan on being next. The NHS turning a blindeye on this condition will be one that in years to come they will look back on with regret.

This coming week is filled with more appointments. I am rather looking forward to seeing my neurologist, I am going to ask if he will botox my calf again and see if this helps with learning to walk!

Posted in Archive, July 2014

Dystonia: 2 Years on

Posted on by dystoniaandme

Yesterday marked two years since I became ill with Dystonia and had my whole life turned upside down. I went from first year student midwife having the time of my life to struggling to do simple tasks like putting jeans on or getting around the house. Life has not been the same. I must admit that despite my best efforts I was rather emotional yesterday and found it extremely difficult to be cheery. However I must slap myself on the wrists and wipe away the tears because despite all that life has thrown at me I have not and shall not give up. Yesterday may have been the two-year mark, but today is the day I found out I have qualified as a Reflexologist and tomorrow is full of possibilities!

I could focus on the negatives, for example the many ambulance trips to hospital, but there is simply no point in that. Where would it get me? Over the last two years I have achieved so much, met the most inspiring people and had opportunities to do things I would not have been able to do if I were not ill. I may not be exactly where I thought I would be now, yet I have achieved more than I thought I would be able to whilst living with Dystonia. Life is unpredictable and is a bag full of mixed emotions, but what you are given is what you have to deal with. I do not see the point in letting it get me down. So I’m cherishing the memories I have, riding whatever dystonic spasm that gets thrown at me, and celebrating the wonderful opportunities that I am fortunate enough to have had and to be receiving!

blblo

Posted in Archive, July 2014

Chronic Lyme Disease

Posted on by dystoniaandme

I have put off writing this blog post for a few weeks now. Not because I didn’t want to be open about what I’m currently experiencing, but because putting it all down into words makes it all very real and I am finding it extremely hard to deal with. As I have mentioned before the doctors believe my Dystonia is caused by damage to my brain by Lyme Disease. I contracted Lyme Disease when I was six and have been on oral antibiotics for it since May last year.

A couple of weeks of a go I finished the last of my oral antibiotics. Although I had been told that realistically I needed IV antibiotics to cure my neurological Lyme disease, I had hoped that a year on oral ones may have been enough. Unfortunately it had not been and over the last few weeks my hand spasms, back spasms, vocal tics, fatigue, on/off functional paralysis etc have all come back. I have been coping with this the best I can, its been coming back slowly so I have had a chance to ‘adjust’. However now and then spasms will happen and I will have a bit off an emotional wobble. I cannot write anymore, I struggle to do my make-up, getting dressed has always been hard due to my Dystonia but throw in Lyme Disease and it takes most the morning to accomplish on a bad day. Yesterday I was just trying to pay for an item in a shop and my hand spasmed around the card reader, I could not let go. My friend had to try to yank my hand off it whilst the till worker pulled the reader out. I was mortified!

Yesterday I visited my GP who does not believe in Chronic Lyme, my mother and I went prepared to do battle. He is normally very dismissive of anything to do with Lyme Disease and had previously said to me that even if my symptoms came back he would not be willing to prescribe me anymore antibiotics. Thankfully he seems to have had a slight change of mind and has give me 2 more months worth. In this 2 month slot I have an appointment at a private hospital that are known to treat Lyme Disease, I am hoping that they will be willing to give me the IV antibiotics that I need to cure me. I am not sure how likely it is that I will get anymore antibiotics off my GP after this 2 month supply runs out. I started them today, and should hopefully see an improvement in the next few weeks. For now I am keeping my fingers crossed that this private hospital pulls through!

On a much more positive note I had my Botox injections last week for my Dystonia which means my jaw and neck will be in place whilst I am on holiday!

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.

 

Posted in Archive, June 2014

Mixed Appointments

Posted on by dystoniaandme

I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.

Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan.  The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.

One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.

I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!

On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.

Posted in Archive, June 2014

First Yoga Session

Posted on by dystoniaandme

Today I had my first one to one session with a local Yoga teacher. I had been inspired to give this a go after hearing a number of other Dystonia sufferers saying they managed to do it and enjoyed it. The teacher was lovely, she believed in completely looking at my body as a whole and worked out what I could do, not what I couldn’t! This to me was important as it took away the feeling of being disabled. For me interestingly enough I found that my hypermobility was my main issue more than my Dystonia during the session, as I had to work on controlling my flexibility so that I did not over flex the pose.

Research has shown that the benefits of yoga for movement disorders include improved strength, flexibility, balance etc. This is something that I am working towards (minus the flexibility) as due to my muscle spasms I am aware that the strength in places like my legs will not be as good as they were before I was ill. I never had a sense of balance, so if I can gain that then I’m not going to complain!

I found the whole experience to be actually quite relaxing. The fact that my Dystonia only played up a handful of times meant that I could really enjoy the session and appreciate what I was doing. My teacher was surprised at how much she could get me to do, this pleased me as I felt like I was achieving something. She explained as we went along what each pose would help with and what muscle it would stretch. By the end of the session we had a whole routine put together that I will do for half an hour every morning. I am hoping that by doing regular Yoga my muscles will get used to being stretched often, that way when it next does one of its extremes spasms – like the one that damaged my knee ligament – I won’t do as much damage to my body and I won’t be in as much pain. As much as I hope I never have to deal with that sort of extreme spasm again I know there is a good chance I will have to. I am extremely interested to see if this will help.

Posted in Archive, June 2014

Exasperated

Posted on by dystoniaandme

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.

 

Posted in Archive, May 2014

Little Things

Posted on by dystoniaandme

The last week and a bit I have had a bad cold, which would normally be fine but as I have mentioned before Dystonia tends not to react well with other illness even if they are just small things like colds. This has resulted in a week full of a variety of spasms and a handful of pain triggered non epileptic seizures. My jaw has tremored quite a lot, I can only presume that the pressure in my sinus area has aggravated it and this is why it has played up more than normal. This in particular has caused the most pain as often my tongue gets bitten in the process.

In spite of feeling under the weather and my Dystonia alien being more mischievous than usual I managed to sit outside the house and enjoy the sunshine. This may sound rather simple, but it involves quite a maneuvering process as our house is not very wheelchair friendly. I normally don’t try to get out the house unless I am actually going somewhere as its hard to do and rather painful.To actually have achieved this without ending up in a hospital A&E department was extremely satisfying. I love being out in the sun, even if it is just for 20 minutes, it’s a nice change from being inside. Even though it’s a very simple achievement it is one that I am celebrating.