Tag: Movement disorder

Posted in Archive, May 2014

Leg/foot Dystonia

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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.

Posted in Archive, May 2014

Oromandibular Dystonia

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Oromandibular Dystonia affects the mouth area, this includes the tongue, jaw and lips. It is part of my Generalised Dystonia and I find it affects both my jaw and my tongue. I have often found myself in situations where I have found myself sounding like I am drunk because I am unable to pronounce my words due to the spasm going on in my tongue.

Oromandibular Dystonia often affects the sufferers ability to chew and speak. When my spasms are bad I find that I can only consume liquified foods and yoghurts, as the spasms that are taking place leave me unable to chew. Some people may just have Oromandibular Dystonia or they may have it with Blepharospasm (Eye Dystonia), or as part of Generalised Dystonia like myself. If it is a focal Dystonia (just on its own) then it normal appears between the ages of 40 and 70.

Oromandibular Dystonia was one of my first symptoms. I was at university, and to be honest I didn’t really think too much of it at first, but then when the spasms became extreme and caused my jaw to dislocate I began to realise just how much pain they could inflict. As there is no cure for Dystonia a combination of Botox injections and medications are used to manage it. I find Botox injections to be particularly effective at managing it. Botox seems to only work for around 5/6 weeks for me, luckily I have a very lovely neurologist who is willing to administer the injections every 6 weeks. This works fantastically well for me, as without this my jaw spasms are extreme. Some people find pressure points or chewing gum helpful in managing their symptoms.

I would highly recommend for anyone wanting to know more on the condition checking either out The Dystonia Society website http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/mouth-or-tongue-dystonia or The Dystonia Research Foundation http://dystonia-foundation.org/what-is-dystonia/forms-of-dystonia/focal-dystonias/more-on-oromandibular-dystonia .

Posted in Archive, May 2014

Blepharospasm

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Blepharospasm is a type of Dystonia that affects the eyes. These spasms are often rather painful and can involve the eyelids as well as the muscles behind and around the eyes. As with all types of Dystonia people experience different types of spasms, some people have increased sensitivity to light and rapid blinking, whilst others find their eyes spasm shut, and in some cases the muscles behind the eyes pull the eyes up into the head making the person functionally blind. I experience several of these spasms and find that the sensitivity to light often triggers the other spasms.

Generally speaking symptoms usually appear in people around the ages of 50 to 70. However it does affect younger people, Blepharospasm can appear on its own or in conjunction with or part of other Dystonias such as Meige Syndrome or Generalized Dystonia. Blepharospasm is thought to affect around 7,000 adults in the UK.

There is currently no known cure for Dystonia. Treatment for Blepharospasm normally involves regular Botox injections. I find that six weekly injections around my eyes helps with symptoms such as spasming shut and rapid blinking, but the muscles behind the eyes cannot be injected. By wearing dark sunglasses in the sunlight or in brightly lit area, I can reduce the chances of going blind but it still happens. The longest this has ever happened for is 15 hours. Some people find that pressure points around the temples, and nose area can help relieve the spasms. Obviously these pressure points differ from person to person.

In the picture below you can see my eyes pulled back in a spasm leaving me functionally blind.

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The Dystonia Society’s website has some great tips on how to cope with the condition so head on over to it to find out more http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/eye-dystonia-

Posted in Archive, May 2014

Dystonia Awareness Week

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From today to the 11th of May is Dystonia Awareness week! To celebrate it and help spread awareness I have taken apart in the Go Green for Dystonia campaign. I decided that I would do this in a similar way to last year and have dyed a section of my hair green for the week (luckily it will wash out quickly).

. Photo: Green streak in my hair and wearing green for Dystonia awarness week.

I have a of couple awareness activities planned for this week besides being part of the Go Green for Dystonia Campaign. The first of my awareness activities is to do a blog every day, minus today’s entry I plan for each one to focus on a different aspect of Dystonia and how they can impact on day-to-day life. On Wednesday I am running an Awareness event at my college which I am really excited about, it’ll be a fantastic opportunity to educate lots of people on the condition and raise a bit of money for The Dystonia Society.

I have also signed up to Thunderclap, which is something all of you lovely readers can get involved with too! Thunderclap sends out an awareness message via your Facebook/twitter/tumbler (depending on what you choose) at 1:30pm on May 9th. It’s a great way to spread the word about Dystonia. Even Stephen Fry has signed up for it! If you would like to join in here is the link https://www.thunderclap.it/projects/9777-dystonia-awareness-week.

 

 

Posted in April 2014, Archive

London Marathon 2014

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Last Saturday my family and I went up to London to watch my cousin David and his lovely friend Sam run the Marathon to raise money for the Dystonia Society. It was such an amazing day. We were extremely lucky with the weather, and managed to get a fab viewing spot at the halfway mark. This was perfect as not only did it enable us to have a great view of everyone but it also meant we had a chance to grab David as he ran past and take a quick photo with him.

I’m thrilled to say that David and Sam have achieved their sponsorship target and have raised over £3000 for the Dystonia Society which is just incredible.  I had never met Sam before so it was fantastic to finally meet her at the celebratory dinner. Watching them run was so emotional and inspirational and I extremely thankful to them both for taking on such a huge feat.

Posted in April 2014, Archive

Tea Party Fundraiser

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Saturday we held our Tea Party fundraiser for the Dystonia Society. The day was a complete success with many more people than last year showing up which was an incredibly uplifting sight. My body was still playing up a lot, this meant that I had several pain triggered seizures as my new leg spasm was aggravating the torn ligaments in my knee. However I view having these spasms in front of everyone as a complete positive, they got a good look at what Dystonia can do you.

A good family friend had offered to make a cake to raffle off for the occasion. She is very talented, and the cake looked so delicious! 

Our house was packed all day long which was amazing to see. The Dystonia Society had sent us lots of useful leaflets which we had put on display around the house, everyone seemed to enjoy these and it sparked lots of different questions. Raising awareness has become such a big passion of mine, so I was overjoyed at how successful the day was. One of the elements I loved about it was that the people who had come along could also ask members of my family questions and talk to them about it. Even though they don’t have the condition their lives are still affected by it.

In total so far we have raised £425.00 for the Dystonia Society and some more people have said they would like to drop in donations which will boost our total even further. I am so grateful to everyone who came along, it was such an incredible day.

This weekend my cousin David and his friend Sam are running the London Marathon to raise funds and awareness for the Dystonia Society. They are aiming to raise £3000! He was interviewed by his local newspaper the other day, which has raised more awareness of Dystonia! If you would like to read the article here’s the link http://www.thewestonmercury.co.uk/news/seaquarium_boss_inspired_by_cousin_to_run_marathon_1_3533729 .

Posted in Archive, March 2014

Hertfordshire Group meeting

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Yesterday I attended the Hertfordshire Dystonia Group meeting. I cannot even begin to describe the joy it brought me. Finally meeting other sufferers face to face and hearing individuals describe their journeys to me and the different ways they manage their conditions was a very comforting and freeing experience.

A speaker, who has Generalised Dystonia, had been arranged and I must say Suzie was absolutely inspirational to listen to. At 16 she had won a scholarship to train as a ballet dancer at the London Studio Centre, unfortunately three terms in she started suffering with Dystonia, that has gradually progressed. However she is such a positive, determined, talented woman and has not let Dystonia stop her in the slightest. She now created ActOne ArtsBase which is a platform for young people and adults with and without disabilities to explore dance. The work she is doing really is amazing. For anyone wanting to check her work out – http://artsbase.org.uk/dancebase.php

Within the talk that Suzie was giving she mentioned how felt that exercising helped her manage her spasms. This is a theory that my personal trainer has touched on several times with me. Whilst certain exercises may trigger a spasm most tend not to. This is something that I have noticed, and it amazes me, for example I can ride a horse but I am unable to walk. One of my spasms involves a rather violent arm spasm/twitch, out of the many people I have spoken to online not one of them has had this particular symptom, which has gotten me into a few awkward but amusing situations. So I was delighted when it transpired yesterday that Suzie also has this spasm, having someone else say yes I do that too, made me want to laugh out loud and breathe a sigh a relief!

Meeting everybody yesterday has given me such a big positivity boost and in a way normalised Dystonia for me. Everybody was so lovely, if it had not been for the fact my body had been deteriorating I would happily have spent several hours more sitting there getting to know everyone. It was perfect.

Posted in Archive, March 2014

Oromandibular Dystonia

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Since last Friday my Oromandibular (jaw) Dystonia and tremor has been rather bad. These spasms leave my jaw extremely distorted and the pain is constant. Unfortunately my Botox is a week later than usual, my appointment is not until the 18th of this month. Even though I know it is just under two weeks to go now, I am finding it hard to function due to pain.

However there is always a positive and I refuse to let this be a purely negative blog post. Despite the spasms that were severely affecting my jaw and neck last Friday I still managed to get into college. I cut down my workload as I knew it would not realistically get done without exhausting my body, but I managed to get in, which surprised me as I did not expect to in the state I was in.

It never ceases to amaze me just how exhausting pain is. Today my jaw has insisted on tremoring a lot. I use a teething dummy to protect my teeth and tongue, at the end of my last tremor however I was not quick enough at removing the teething dummy from my mouth, with the way my jaw then spasmed it got slightly stuck…I cannot even begin to describe how much this amused me, it took a whole hour before I was able to pry the dummy out from between my teeth. It really was hilarious.

It is moments like these that are vital. Dystonia is hideous. The pain that I am going through on a daily basis is enough that all I want to do is curl up in a ball and sleep until I can get my Botox injections. But sleeping won’t raise awareness of the condition, hiding away won’t beat the condition. Moments of pure hilarity are part of what makes Dystonia bearable and I am so thankful for these moments!

Posted in Archive, February 2014

Positive Neurology Appointment

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On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.

I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.

I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.

This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.

Posted in Archive, January 2014

Short and Sweet

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Todays blog i am going to keep short and sweet…you can all breathe a sigh of relief ;-p.   I want to start by saying thank-you to all of you who have nominated me or endorsed me for a WEGO Health award, it is extremely touching! Below are some links that I think are really worth checking out! Happy reading.

I was doing my usual surfing of The Dystonia Society’s website and came across the link to The Global Dystonia Registry. This is a huge international database of Dystonia sufferers that scientists and researchers are using to understand Dystonia better. The more sufferers that register themselves on the database the more research can be done, and that can only lead to a more optimistic outcome for us all! For anyone who wants to know more here is the link to The Dystonia Society’s page which explains a bit more http://www.dystonia.org.uk/index.php/about-dystonia/global-dystonia-registry .

This year is full of exciting things, one of those is the London Marathon which my cousin David and his friend Sam are running in, to raise money for the Dystonia Society. I admire them for doing this, despite the weather we have been having, they have both continued training out along muddy canal paths and fields. They log their progress on Facebook and twitter so please follow them as they train to raise money for such a fantastic cause!

https://www.facebook.com/Davidandsamrunthelondonmarathon?fref=ts