Tag: generalised Dystonia

Posted in Archive, September 2013

Craft Fundraiser for Dystonia.

Posted on by dystoniaandme

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.

 

Posted in Archive, September 2013

Basking in Positivity

Posted on by dystoniaandme

The last few days have been truly fabulous! I got into college to study a Level 3 diploma in reflexology, had a meeting with the learning support team who were completely wonderful about my Dystonia, and today I have been out for lunch with two of my best friends who I had lived with at uni.

My course starts in just under two weeks, and at first will be only be for 3 hours one evening a week and then progressing to each saturday as well when we start working on clients. It is nice to have found something I can be passionate about and to study towards. Being able to study Reflexology is also rather reassuring as I can go on to work from home. I have spent months thinking I would never have a carer, but since taking the antibiotics which have calmed down my Lyme symptoms, I feel empowered and full of hope.

I was thrilled to go out to lunch with my friends this afternoon. Having lived with them at uni, I miss them a lot. I got a taxi up with one of them to the Beefeater, which was a good experience. Normally my mother or a family friend takes me if I’m going  out somewhere, so it has given me confidence knowing that I am able use a taxi service with ease. I felt like a ‘normal’ person and did not feel extremely conscious  like I normally do when in a restaurant.

Having everything go right the last few weeks and has been amazing, I have not had to fight to get what I’m after, which has been a nice change. I feel extremely relaxed. My little Dystonia alien is by no means letting me forget he is there, but I’m giving him no attention and basking in the positivity that is filling my life currently.

Image

 

Posted in Archive, August 2013

Tremor and The Fantastic Effects of Reflexology

Posted on by dystoniaandme

Today my jaw tremor has returned, I’m not too pleased about this as it is earlier than I expected it to be, however I am having my Botox injections next Tuesday so it’s only one week of putting up with it. I do look rather silly as I have a baby teething dummy in my mouth to protect my teeth so that the tremor does not loosen any more of them.

I have had weekly reflexology sessions for a few months now and I cannot get over just how much of a positive effect it has on my body. My feet like to spasm in the evening and the pain in my knee and hip joints get bad, this normally means I will be lucky to get more than four hours sleep. However with reflexology I have found that I get between three and four fantastic nights of sleep, which makes a big positive impact on my energy levels during the day which enables me to handle my spasms better.

I tend to have my reflexology sessions on a monday afternoon. The night before the session my sleep is almost non-existent, I’ll spend the night strapped up to my TENS Machine, doing my meditation breathing exercises etc in an attempt to get to sleep. I have even started using rescue remedy night drops which have helped a bit. To go from almost no sleep to the next night sleeping dead to the world is the most amazing experience. If I could afford to have reflexology several times a week I would not think twice about doing so.

I rely on medication to try to suppress and manage my Dystonia. Whilst these medications are essential I would much rather not take them as it’s not good for your kidneys and your liver to be constantly bombarded with them. Therefore having an alternative to help me sleep and deal with my symptoms is such a giant relief as I was very reluctant to go back on to my sleeping medications. When you have Dystonia you are told to try to avoid stress as it can exacerbate your symptoms, now obviously it’s near impossible to lead a stress free life as Dystonia itself is rather stressful. Reflexology is so far my biggest stress reliever, I honestly do not know how I would cope without it.

I saw this quote earlier and fell in love with it, I find it rings very true.

 

Posted in September

Return from Holiday and Sensory tricks

Posted on by dystoniaandme

I am now back from a fantastic and relaxing holiday in the Cotswolds with my family. I think it did all of the us the world of good to get away for a little while. I was shocked and over the moon that I managed to go out everyday and did not have a full body melt down with a handful of seizures thrown in until the Thursday!! We went to a number of places which were more wheelchair friendly than I expected which was amazing, my favourite being Warwick Castle where we watched the jousting.

The week before we went away I saw my reflexologist twice to try to prolong the effects the reflexology has. I am extremely glad I did this as it meant that I slept well until the Wednesday when my body reverted back to its ‘i’ll keep you up till 3am’ normality. My reflexologist is away for a week or so now and I am really looking forward to her return so that I can have some spasm/pain-free nights again. I am now counting down to the 27th when I go to see my neurologist for my injections. It thrills me to know that with them being done so often the pain I normally endure for weeks shall now be almost nonexistent.

Whilst on holiday my eyes went blind several times due to the spasms. Normally this causes seizures, and a few times it did, however I again tried doing sensory tricks to my eyes to see if they would make a difference and for once I seem to have found one that works for me! It only works on the spasm that pulls my eyeball upwards so that only the whites of my eyes are seen. I have found that by putting pressure on my eyes and moving my hands in a downward motion a few times that it encourages the spasm to release. I could have danced with joy when I found this worked as it should reduce my seizures!

I am feeling extremely positive at the moment, and very relaxed after a wonderful holiday. I may not be in control but I am coping and finding ways around my little Dystonia alien. Just got to take it one day at a time.

Posted in Archive, June 2013

Troublesome Tremor & Consultant Conundrum

Posted on by dystoniaandme

On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to hospital, and had an urgent visit to the dentist as the tremor is actually dislodging my teeth! It all is beginning to get a little bit too much and I desperately want the pain to go away. Knowing that the tremor is actually dislodging some of my teeth concerns me a lot. I still have a few baby teeth with no adult ones underneath them, so to know that this tremor is dislodging them is rather alarming. The Dentist I saw was an extremely lovely chap who reassured me that everything would be done to keep my baby teeth in for as long as possible.

As I have mentioned previously we have been emailing my consultant for several weeks now asking if he could book me in for Botox injections. Today I finally got a date, for three weeks time (July 16th). This is 5 weeks later than normal. Now this may not seem like a long time, but being in agony 24/7 and struggling to eat and drink makes the situation almost unbearable, I am currently only just about coping by taking Oramorph (morphine) and Diazepam. It is also extremely debilitating. I have pain triggered non epileptic seizures, not only does this often result in me ending up in hospital but it also puts major parts of my life on hold. I normally go to my local Riding for the Disabled stable on a thursday for a riding lesson, this is an activity that is extremely important to me and one that I thoroughly enjoy, however I am unable to ride when I am having so many seizures.

There was also no mention of my week admittance into the hospital that was meant to happen over two months ago in this email. I am now sadly looking into transferring to another consultant at another hospital as I feel completely neglected by my consultant. I feel like he dangles hope in front of me and then snatches it away without warning.

On a more cheery note I got my splint for my left leg yesterday! This makes things like getting in and out of the house so much easier and has so far been a joy to wear. It is amazing how much of a difference the little things in life can make!

Posted in Archive, May 2013

GABA and Dystonia

Posted on by dystoniaandme

I often view The Dystonia Society’s website to check out the latest information on research, treatment and more. The other day I started reading an article on their website entitled The Basal Ganglia and Dystonia. It was an extremely intriguing article and for those of you who have not read it yet I suggest you do http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia .

The section that interested me most was on the role of GABA in Dystonia. At the moment the medical society think (but have yet to prove) that a shortage of an inhibitory neurotransmitter such as GABA could have an impact on Dystonia, as it seems that Dystonia is a failure due to inhibition. Many patients, myself included, who suffer from Dystonia are sometimes put on medications such as Gabapentin, Baclofen or Benzodiazepines. All of these medication increase the amount of GABA in the brain.

I was extremely interested to read this as I currently take both Gabapentin and Baclofen and have found both to have incredible effects on my spasms. The Gabapentin felt like a miracle drug when I was first put on it as has had a huge positive impact on my full body spasm and on my eyes! The Baclofen at the moment is having a fantastic effect on my neck spasms as well other spasms.

So I cannot help but wonder if I have found the answer I have been looking for to why I have Dystonia! I know that I will have to wait until the medical society have managed to prove if this theory is correct, but I cannot help but feel slightly excited. I am always trying to understand why I have Dystonia, and to have an answer would give me peace of mind. I may have a long wait ahead of me but I shall be keeping my fingers crossed.

Posted in Archive, May 2013

Sleep & Dystonia

Posted on by dystoniaandme

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.