I have dystonia…Any questions?

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London Marathon 2014

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.

Fundraising and Awareness

As many of you the Dystonia Society is a charity that is very close to my heart. Without the amazing work they do I would not have known who to turn to in the beginning, I would most likely still be looking for a diagnosis. The support they provide is invaluable to so many sufferers and the website is full of information that is constantly being updated. They also help provide funding for research, this is vital as you never know whose research will one day find a cure to Dystonia. For such a small charity they provide an amazing service, however they are reliant on donations. This is why each year I do lots of fundraising activities and awareness campaigning.

My cousin David and his fabulous friend Sam are running the London Marathon in a couple of weeks’ time. This is something I admire them greatly for doing. They are aiming to raise a total of £3000 for the Dystonia Society. Now some of you may be thinking that’s a mighty high target! Well, that’s because the London Marathon organisers charge charities £2000 a place! So for charities to actually gain any money from donations the targets have to be placed extremely high. However people who have not gained a place through a charity don’t have to pay anywhere near this amount of money to run!  If you would like to help David and Sam achieve there £3000 target here is their Just Giving link http://www.justgiving.com/DavidandSam2014.

A fab company called Recykilt are running a competition so if you like to win a one of kind Recykilt cushion, when you donate simply type the words Recykilt in the comment box, make sure you have included your name. You can see examples of previous cushions here https://www.facebook.com/recykilt/media_set?set=a.171278609595603.40296.100001403947434&type=3

David has been doing other bits of fundraising as well, with his previous company even joining in. So to help out we are throwing our annual Dystonia tea party earlier than normal to raise money to add to David and Sam’s total. As usual our tea party will consist of all the cake and tea/coffee you can eat and drink, along with lots of information on Dystonia. The Dystonia Society have been very kind and provided us with some fantastic leaflets so if anyone has any questions that I don’t know the answers to then I am sure they will be in there. 

Last year myself and a lady in America organised an event called Go Blue. Well this year, I am encouraging everyone to Go Green during awareness week (May 3rd -11th), which is the Dystonia Society’s colour.  Whether you dye a lock of hair green, dress in green, wear green make up etc., it does not matter as long as people know what you’re doing and why. Encourage as many people as you can to get involved, take a photo and spread the word.

The Dystonia Society are also using a website called Thunderclap that co-ordinates sending messages out for groups of people. The aim of this is that on the 9th May a mass message gets sent out at 1:30pm through the social media network saying ““Help us raise awareness of #dystonia, a neurological condition that causes muscle spasms. Do it for dystonia! http://thndr.it/1fXu9dr” The more people that sign up to Thunderclap, then more people will see this, it is a fantastic awareness tool, but it will only work if lots of us sign up to it.  You can register through your Twitter and/or Facebook account with them, and it sends out a message on your behalf at the set time during awareness week. You can register here https://www.thunderclap.it/projects/9777-dystonia-awareness-week?locale=en .

I have some other fundraising and awareness ideas up my sleeve, but until they are certain I shall keep them for another blog post. Raising funds, and awareness is the only way Dystonia will ever be cured, so please share this, donate, and sign up!

Hertfordshire Group meeting

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.

Neurophysiotherapy

Today I had an appointment at Jacketts Field Neurological Centre for my neuro-physiotherapy assessment. I was slightly worried as I had heard very mixed reviews about the unit but was doing my best to go with an open mind. As it was an assessment I knew a lot of the time there would be spent answering questions verbally e.g how does your spasms affect your ability to swallow or do you have any walking ability? However some of it was going to be physical, this left me concerned as my body is currently in meltdown mode due to lack of Botox so moving about could be painful. Luckily my mother agreed to come with me which put my mind at rest, if the worst did happen and I had seizure after seizure and an ambulance needed to be called, I would be safe and my mother would be able to instruct them on what needed to be done – however all that worrying was for nothing as I didn’t have a seizure :-)

After answering a lot of questions and having a good laugh with the physiotherapist, it was time to demonstrate just what my little Dystonia alien does to my legs. Figuring I would only have to take two or three steps with my walking sticks, plus the physio and my mum holding me up, I happily stripped off my splints and stood up. This promptly set off my spasms in my legs and the next things I knew I was on the floor! I had not even taken one step! Benedict obviously had been enjoying playing twister with my face and got his knickers in a right old twister when asked for my legs to join in…stroppy sod! As much as my body is now a little sore at least it gave the physio a good idea of what exactly I am contending with.

Due to how much my body does, the assessment did not get finished even though we majorly ran over time! So we have had to book another assessment in! I am really looking forward to this.

On a quick note this Saturday I am attending my local Dystonia Society Group meeting, this will be this first one I have been to and I am so excited to meet other people with my condition!

Oromandibular Dystonia

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!

Feeling Good

Last time I posted I felt that I was balancing on the knifes edge and was feeling pretty negative, well I’m feeling darn good today and I plan on enjoying it. My legs have not been as bad the last couple of days, the swelling in my knees is going down and the pain in them is tolerable. This improvement has made such a mental difference as the pain was really beginning to get me down.

Having my pain levels go down has made the biggest difference as it is the pain that I struggle to deal with the most. I can cope with my body spasming, tremoring and getting into unnatural positions but the pain is what I can’t cope with. Normally it would be my jaw that causes the unbearable pain, so at least having it in my knees made a change.

I am now on half term, which mean no college and no riding :-( however I know that it is best just to let my body rest and recover this week, before I throw myself back into everything head first next week. On a positive note I made into college last week!! After being too ill to go in the week before I was determined to drag myself out of bed and into college – trying to get dressed whilst my legs where on strike was interesting but  I managed it and it was the best thing I could have done. I know that I tire very easily these days but doing normal things like college make me so happy.

As I have mentioned before my cousin David and his friend Sam are running the London marathon for The Dystonia Society in April. I woke up to see a small article had been written on them in their local newspaper (Somerset). Its so positive to see awareness of Dystonia spreading!

I often say that I wish I could see inside my brain so I could have a better understanding of what exactly is going on. As other than all the medical jargon I have no idea what exactly it is doing…this picture describe it perfectly and makes me smile.

Worrying

I feel like I am balancing on the knifes edge and that at any moment I could fall. My Dystonia alien and my Lyme Disease had really managed to lull me into a sense of ‘normality’, and over this past week have decided to send me flying to the edge of the knife filled with dread. Up until very recently I had coped rather well with everything, but everything seems to have gone out the window now.

Whilst I have remained seizure free there have been a few moments recently where I have felt right on the edge of one. Last Monday my mother and my little sister spent half an hour looking after me and talking non stop to try to keep me conscious. This has not happen in quite a while and was a shock to all of us. My legs have been bad recently, to the point that last week I did not make it into college on either day, which was to me a big defeat in my battle against the two conditions.

Whilst the pain is bad and gets me down, it is the unknown that I struggle to deal with. My body has progressed and regressed so many times, and each time I deal with it. However it gets harder to do so each time, and right now I have no idea which way my body is going to swing. It may pull through this horrid period and be absolutely fine or it may take a nose dive.

I know there is not much I can do other than stay positive but I can’t help but be scared. Hopefully this is just a bad period and soon my mind will be put at rest.

Positive Neurology Appointment

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.

Short and Sweet

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

https://twitter.com/DavidandSam2014

The Wonders of Medication

It is amazing how well controlled Dystonia can be when you have the right combination of medications in you – for me Botox is the best thing, followed by a lot of Gabapentin! A year ago, I would have had a hideous amount of seizures due to jaw pain and would have struggled to eat, drink and talk. Now with regular Botox and other medications I am constantly my normal motor mouth self.

Everyone with Dystonia reacts to medications differently,for example I know many people find Clonazepam helpful but it causes me to become psychotic. Yet there is no one medication for Dystonia which makes treating it and getting it under control extremely hard. I am very lucky to see an excellent neurologist who is willing to inject me with Botox every six weeks, if he stuck to the usual every 12 weeks I would not be able to do half the things I now can.

On Monday I saw my GP to discuss IV treatment for Chronic Neurological Lyme Disease. I have been on oral antibiotics for around 8 months now and have had significant improvement in the areas affected by Lyme. After months of both myself and my neurologist asking him to set up IV treatment he has finally agreed to write to a couple of the local hospitals and see if they will treat me! This is fantastic progress.

My little Dystonia alien is all full of Botox and docile at the moment. I have been off my main painkillers for a few weeks and I have not had any bad pain episodes yet *touch wood*. I have also managed to come off one of my muscle relaxants, this is great as everything seems clearer and I feel like my memory has improved. As much as I do not like pickling my liver with all my medications I’d be lost without them. I am hoping that this stage of feeling like my Dystonia is ‘contained’ and ‘controlled’ continues, but nothing is ever certain in life especially with Dystonia, so I am focusing on enjoying every little thing each day.

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