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

Posts tagged ‘Dystonia Society’

Trauma & Dystonia

Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.

Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!

I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!

I can only hope that as awareness for the condition spreads the attitude around it changes too.

Please check out today’s VLOG which is on the same subject https://www.youtube.com/watch?v=CJZz7_EMUtE

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Adjusting to Dystonia

When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.

Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.

I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.

I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.

I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.

To find out more about how my Dystonia started check out my VLOG https://www.youtube.com/watch?v=HV_L-9vCGPw&feature=autoshare

Medication Minefield

When diagnosed with Dystonia there is a minefield of medication surrounding you. One wrong move and your limbs are distorting and spasming at a rate that threatens to hospitalise you. A medication that works rather well for one person may have dire side effects on another. Keeping a diary of what medications you have tried and your reactions can come in handy.

Botox injections is a widely used treatment for Dystonia, and in many offers a degree of relief from their symptoms. In the majority of sufferers the injections are administered every 3 months. Personally for me, I find that the injections only last around 5 to 6 weeks so my neurologist administers my injections every 6 weeks.

Medication can be very hit and miss, so finding a dosage that works for you is important. For example, Diazepam is a commonly used muscle relaxant to treat Dystonia. For me if you give a very small dose as a one off I will be fine, in fact I will sleep fantastically well. However if you give me a second dose that same day, or the next day I will have a psychotic break. The last time this happened I seriously thought that if I had my leg amputated I would be cured of Dystonia. It makes no sense, but at that time I was convinced.

One of the issues I have discovered since becoming ill is persuading Drs to play around with medication. Often this can unsettle them, especially when treating a condition such as Dystonia that many have not come across before. Due to this I have found many Drs unwilling to change medication or try different combinations, it has often resulted in me battling before they agree to try. It is sad that this is the case. I have said it many times before and I will say it again, the more awareness there is the better treatment we Dystonia sufferers will receive.

On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .

Dystonia Awareness Week 2015 – The Road To Diagnosis

It’s Dystonia Awareness Week 2015! In a similar way to last year I plan to do a series of blogs explaining the different aspects of Dystonia. Normally my family and I hold a bakesale to help raise funds for The Dystonia Society during the awareness week. However due to the majority of my family having exams this month we have decided to delay this until June. I’ll be posting the date for this soon.

I want to focus today on the road to diagnosis and treatment. This is such a scrambled and boggy area to tread. Many people with Dystonia suffer with the condition for years before getting diagnosed. Often we are made to feel as if it is all in our heads, and end up with referrals for counselling. Trying to get medical professionals to listen and take us seriously can be extremely hard, especially if they have not had any experience with the condition before. I don’t believe they intend to make us doubt our own sanity but it happens.

In 2012, for example, I spent just over a week in a local hospital after the muscles behind my eyes spasmed, forcing my eyes to roll back in the socket and stay there, leaving me functionally blind for 15 hours. Those 15 hours were hideous, I was terrified and in a fair amount of pain. When you looked at me only the whites of my eyes could be seen. I was repeatedly told by doctors during this time to “just roll your eyes down”. Needless to say it became hard not to snap and inform them that if I could do that, I would have done so already. I felt as if no doctor believed me. I was forced to talk to a psychiatrist during my stay.

A couple of months after this I met my wonderful neurologist, who took the time to really listen and examine my symptoms. I was fortunate to get diagnosed in a matter of months. Many others with the condition are misdiagnosed for years, decades in some cases! This is one of the many reasons awareness of this debilitating and life changing condition is necessary. A correct diagnosis leads to treatment that can help improve quality of life. The more awareness that there is the better chance of sufferers being diagnosed in a far more timely manner.

On Wednesday 6th May a Dystonia Awareness message will be sent out Via Thunderclap. The more people that sign up for this the further the reach of the message. So please sign up at the following link https://www.thunderclap.it/projects/24206-dystonia-awareness-week-2015 .

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!

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!

Peace of Mind

The last several days have been very busy and very positive.  I finally feel that I am getting things in place that I need and have an aspect of control. As I have little control over parts of my body, having control over some aspects of my life is very satisfying and makes up for my Dystonia alien crazy ways.

This coming Monday I am going to my local hospital for an appointment with the Orthotic department. My splints have served me well over the last few months, however as it has gotten  colder my spasms in my legs have gotten worse. My right leg spasms so strongly that it often manages to escape my splints. I am hoping Orthotics may have an idea of what they could do to help. If not I have some images of some splints that I think may be able to contain my legs. It would mean having a solid front section to the splint as well as a solid back, this I think would work well as it would be a lot harder for my leg to break through. I’m looking forward to hearing their ideas.

When the Dystonia hit my legs I was given your standard NHS wheelchair – lets describe it as sturdy. My poor mother struggles to lift it in and out the car, and watching my friends lift it makes me feel awful. Recently however the functional paralysis that I experience on and off has meant that my wheelchair needs some extras added to it but this is not something that is possible. This has meant that  when I have an episode of paralysis affecting my back I have ended up flopping half out the wheelchair and being stuck till it comes back.

So after a couple of weeks of pointing this out repeatedly to the NHS Wheelchair service I am now being reassessed to see if I qualify for a voucher that would enable a chair to be customized for me.  Even better news is that the even with all the extra things added to it the chair will still be much lighter than my current one.

Knowing that my splint and wheelchair issues are going to be dealt with has given me such peace of mind and enabled me to relax. They are such small issues but in the long run have a big impact so having the two solved will make a big difference.

Last Saturday I attended a bring and buy sale at my local Church. One of the stalls was raising money for The Dystonia Society. In the end just over a £100 was raised, which is incredible. I would just like to say a huge thank-you to everyone involved.

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Craft Fundraiser for Dystonia.

Today I attended a craft fair that was fundraising for a school and for the The Dystonia Society. I had been rather looking forward to it as it was a great opportunity to raise awareness and to restock my craft supplies – I love to crochet. The fundraiser was busy all day which was fantastic and over £200 was raised for The Dystonia Society.

About halfway through the day I got the opportunity to give a speech on what Dystonia was and what life with it was like. I was slightly nervous that I would be useless and just woffle, but have been reassured the speech was ok 🙂 . I drew on my experiences of living with generalised Dystonia, and whilst I tried to only speak in a positive way, I also spoke in a realistic manner, and sadly Dystonia is not a pink fluffy ball of positivity. I found out afterwards that my speech had reduced some people to tears, which I felt bad about, but it had also inspired several people to do their own fundraising for The Dystonia Society which is incredible!

My church has chosen there september mission to be Dystonia. So they shall also be raising awareness this month which is incredible! I feel very lucky that they have taken on this cause. It was a fantastic day today, and I am so thankful that I was well enough to go down and meet such a lovely group of people.

 

A Fairly Positive Week

I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

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