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.
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.
Raising awareness of Dystonia is vital. The Dystonia Society’s website says that an estimated 70,000 people in the United Kingdom have the condition. Considering just how many people this is, it is still such an unknown condition to both the public and the medical society. By raising awareness and funds more research can be done. Dystonia may not be life ending but it is life limiting. Without research there is no improvement in treatments for the condition and there is no cure.
When I became ill with the condition I had never heard of it, I had lived my life blissfully ignorant. Now it’s fast approaching the two-year mark of my being ill. Dystonia may have taken away many things from me but it has also inspired me. The only way change will happen is if we bring it around. We can sit and moan about Doctors not understanding the condition all we like, but what difference will that make? By actually having the condition and experiencing it we can choose to empower ourselves with knowledge and spread awareness.
I spent yesterday sat in my College canteen raising money and awareness for Dystonia. The age range of students at the college is from 16 to mature, yet all no matter how old or young were prepared to listen to what I had to say and asked lots of questions. I went with lots of leaflets that The Dystonia Society had provided me with and every single one of them got taken by people wanting to go away and read more.
Awareness is key to a cure being found and weeks like this one are the perfect time to do it. Tea parties, joining in with campaigns like the Go Green for Dystonia one or getting involved with Thunderclap, are all so easy but so effective!! Dystonia Awareness Week is not over until the 11th May, so if you’ve not joined in yet, why not now, every voice counts! https://www.thunderclap.it/projects/9777-dystonia-awareness-week
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).
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.
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.
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!
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