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.
“Dystonia is an unpredictable condition. It tends to progress slowly and the severity of a person’s symptoms can vary from one day to another“, NHS Choices. This quote sums up Dystonia quite nice and simply I think. It is extremely unpredictable, which makes it hard to work out what you are capable of doing one day to the next, if you guess wrong the games over for the day. In my case guessing wrong would result in me putting my spasming body to bed and hoping that a long nap will help calm my symptoms down…but thats providing the spasms don’t stop me from getting to sleep. I always try to make the most out of each day, to accomplish as much as I can incase the next day results in being unable to move from my bed. However trying this can often backfire on me and ensures that I spend the next day in bed, but sometimes if I’m really lucky I get away with it for a day or two. These are the days I love, as on these days I am beating my Dystonia – not permanently, but even an hour of winning is a huge achievement.
Dystonia symptoms and it’s impact varies from person to person. A quick glance at the Dystonia Society’s list of type of Dystonia and their symptoms gives you an idea of just how wide a range http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia . Due to this it does not surprise me that Doctors understand so little about the condition, why patients have little choice but to fight tooth and nail to find a treatment that works for them, to find a doctor who will listen. Through the power of the internet I have slowly got in touch with more and more sufferers, and even a handful of curious doctors. The sufferers amaze me. I hear the stories, and count myself lucky that I have a good support network, something many do not have. We all band together to raise our voices to get Dystonia out there, and it’s working. Slowly but it’s working. The emails I get from Doctors around the world prove that.
Yesterday at Choir we were practicing Christmas songs, which got me thinking of all the things I was thankful for. As much as I wish nobody had to suffer from this hideous condition, I am so extremely thankful that there are others out there. That those of us lucky to have found each other can support one another, give advice and a listening ear. Without being in contact with these amazing people, I honestly wonder how I would cope. I am also thankful to those of you who read this blog, and often share it with others. Since becoming ill I have become determined to become an advocate for Dystonia, to make my voice heard, and bring awareness to the condition and what it is like to live with it. Looking at the comments you lovely people leave me, the shares, likes and statistics brings me such happiness, as it shows me just how far my voice is being heard and assures me I am on the right path.
On one last note, I promised a while ago to upload photos of the amazing women who raised money to buy me a bath lift. I have attached them underneath. I feel incredibly lucky to have met such generous and caring women.
After two weeks of no seizures, and no ambulance trips since July, my seizure free luck ran out yesterday. Having had a fantastic day at college, I collapsed outside my house after my legs went into a bad spasm. I feel sorry for my poor friend who took me home that day as it was not a nice experience for her.
I gave my body a good whack on the ground when I collapsed, triggering my seizures. Normally with my Non Epileptic Seizures I come round, even if it is just for a second, between them. However yesterday this did not happen, I remained unconscious in between. Luckily my younger brother and one of younger sisters were at home, so they were able to bring pillows, blankets etc out to keep me warm whilst my friend kept me safe.
An ambulance had to be called, thankfully I always tell everyone that I have a letter from my neurologist in my handbag instructing paramedics and doctors on what to do. This letter meant that the paramedics quickly administered diazepam to me. As I was remaining unconscious and had been unconscious for so long I was given oxygen and taken to the resus unit at the hospital, where I was monitored for several hours.
I feel sorry for the first doctor in charge of me as he was very unsure of my condition and therefore seemed to feel frustrated as he was unable to help me. My body being its usual unhelpful self did its typical vein disappearing act. It took the poor man seven attempts to get a line in me and bloods out of me.
Despite this incident ruining my good streak, I am still viewing it as progress! Hopefully these blues and twos trips to hospital will continue to be less and less, until they fizzle out completely all together. It may take time, but it will one day happen. I am so thankful for my letter from my neurologist, I am sure with it out I would not have received diazepam so quickly, and that was much-needed to help bring me round.
I am now home and shall be spending the next couple of days recuperating from yesterdays events.
My little Dystonia alien has been a right pickle to put it politely, for the last two days. It is doing a new spasm, which whilst I can bear it at first eventually becomes agonising. It’s one of those spasms that makes me welcome the bliss of unconsciousness that my non epileptic seizures bring. During the seizures I am completely out of it and unaware of any pain, whilst normally I hate these seizures the last two days they have been a welcome and needed break from the spasm.
My normal method of using a TENS machine, massaging the spasming muscle etc have not made a difference to this spasm. Therefore I have relied on topical medications such as volterol and oral medications such as Tramadol and Diazepam, to help me through the spasms.
Whilst these are not the best pictures you get the idea of what the spasms were doing. I am not sure what triggered this spasm to develop and am hoping that my body is fighting a bug and that is why my Dystonia is playing up. Illness always seem to worsen my Dystonia, which in this case would be a nice reality compared to the horrid thought of the spasm being here on a daily basis.
I am determined to stay positive and am focusing on all the fantastic activities starting next week, such as riding, and my reflexology training. I am extremely excited as I have had an email saying my text books are on their way. I love burying myself in a textbook so I’m looking forward to their arrival.
I am hoping that the spasms will stay away for the rest of the night so that I shall get a good nights sleep as I am completely exhausted. It is amazing how tiring being in pain is.
Yesterday I threw a fund raising tea party to raise awareness and funds for The Dystonia Society. The day exceed my expectations by miles, which was fantastic! More people than I had anticipated turned up which was amazing and really added to the day! Our house was constantly filled with people drinking tea and eating a variety of cake!
What amazed me the most was how generous people were with their donations, it was really very touching! Lots of people read through the leaflets that the Dystonia Society had provided us with and asked me a lot of questions, this was fantastic as I felt that everyone there was really interested to learn more about Dystonia.
At one point in the afternoon I was shaking my sisters friends hand goodbye when my hand suddenly spasmed. I was slightly embarrassed as I was unable to let go of his hand and the spasm was just getting tighter, luckily he found it rather amusing and said it was fine and wiggled his fingers out of the spasms grasp. This provided great entertainment for everyone in the room and also showed them a glimpse of just what my little Dystonia alien could do.
By the end of the tea party I was completely and utterly exhausted, but over the moon by how much we had managed to raise! So far a grand total of £577.26 has been raised which is mind-blowing!!! Dystonia awareness week has only just begun though and my hair shall be staying blue for the week as part of the Go Blue Movement to raise awareness and funds for Dystonia. So if you would like to help me raise even more money for The Dystonia Society please visit my Just giving page http://www.justgiving.com/Rebecca-Moller1 .
Here are a couple of pictures from yesterdays fantastic tea party!