Jun 10

Harbinder Sandhu Q & A’s from The Dystonia Society on Vimeo


Dystonia sufferers may find this question and answer session with Dr Harbinder Sandhu,done for The Dystonia Society very interesting. 🙂

http://www.dystonia.org.uk/index.php/26-living-with-dystonia/638-dr-harbinder-sandhu-q-a-video
Harbinder Sandhu Q & A’s from The Dystonia Society on Vimeo

So that you can find individual questions easily, the timings for each question are included below:

2:00 – Can you tell us a little bit about your research project and what helped inform it?

12:46 – What types of dystonia did participants in your study have?

13:27 – Is there any relationship between the type of dystonia an individual has and the non-motor symptoms they might experience?

14:27 – What difference do you think your research will make to people with dystonia?

15:25 – How effective do you feel Mindfulness is?

16:24 – Do you think Mindfulness is here to stay or is it just a current trend?

20:03 – I feel alone and isolated because my dystonia makes it hard to leave the house. Is this normal?

22.11 – I have Cervical Dystonia and I swim twice a week. I feel better in spirit and health after swimming, but my neck feels worse the next day. I have taken 2 weeks off from swimming but the neck is worse. Should I just press on and swim for the sake of my sanity?

24:06 – How necessary is an understanding of dystonia when offering support with non-motor symptoms? (ie for physio, CBT, pain management etc.)

25:11 – Since developing dystonia I noticed that I have also started to feel anxious and depressed and I find it hard to talk to my family about it. Do other people with dystonia feel like this?

28:13 – What are the next steps with your research project?
I hope this has been helpful 🙂

Jun 07

Aww I Hurt! 


Image from Google pictures.

I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May.

I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that even though everything was arranged for accessible, nobody seemed to care. Well most! 

But at the moment this morning I’m in so much pain! 

I had massive abdomen spasms last night, ones where it pulls the whole body up and holds it there until the muscles relax again. Then it happens over and over! If I could do these myself, my body would look great! 

Only I have no control over my body spasms, they are involuntary just the same as Dystonia. Though because I am diagnosed with Functional Movement Disorder, they tell me it is Functional Dystonia. 

I also have eye spasms (Blepharospasm), and Hemifacial Spasms. Plus I have Cervical Dystonia, all of which I have Botox injections for. I have had spasms in my left side back muscle, shoulder, arm and hand. These spasms started before any others, so how come they are not classed as Dystonia? Or my leg spasms, where you can even see the muscles moving as they spasm? 

Anyway, they say mostly Functional Dystonia. I get to a point I don’t care what they want to call it all, I just want looking after properly! 

My insides hurt so much today, my abdomen doesn’t get much of a work out anymore due to my disabilities. So last nights Involuntary Abdomen Spasms have left their memory, leaving me feeling in more pain than usual.


The International Symbol Of Access, Image from Wikipedia.

It may sound weird, but as a Chronic Pain Sufferer, you actually get used to your pains and find ways to deal with them. But the unexpected pains, additional pains, they are ones we are not used to so they hurt more.

Well, it’s going to be another hot sunny day here. I hope you all have nice weather where you are too.

As always, thanks for reading and take care X 

May 23

Botox Injections 

I had my Botox Injections last Tuesday, and they couldn’t have come soon enough!

I was in so much pain with my eye, neck and head that I was having trouble sleeping.

I thought you might like to see the injection points that I have, so here are some pictures to demonstrate.

img_7204
I have the injections shown at, A, B, C, D and H. These are for my eye, which closes slowly over time and blinks. My eye looks really sunken and dark at the moment, and keeps weeping which makes it very sore along with the pain it already gives me.

img_7205

I also have an injection in my left cheek, similar area as shown in the above photograph.

img_7203

Then I have an injection in the Splenius Capitus muscle, and I get the full 100 units. This is for my Cervical Dystonia, which makes my neck spasm and move making it very painful. I regularly have to hold my neck with my hand, and wear a scarf to help pull my neck up into place when needed as well.

I have to use a neck cushion while sitting on the sofa, as I cannot hold my head up all the time. I also have to use a neck cushion to go to sleep, I have needed to do this since March 2012 when my neck got really bad!

All these injections, are given every three months. They are a life saver, they make such a difference to my daily life.

Pas always, thanks for reading and I hope some of the information was valuable to you 😊

 

 

May 23

FMD and the difference between other movement disorders

image
Functional Movement Disorder has many overlapping symptoms of other movement disorders, such as Dystonia, MS, Parkinson’s, Lyme Disease, Lupus, Chorea, and many, many other movement disorders.

The difference being that whilst these others are an organic brain disorder, then some may possibly shorten life.
The functional movement disorder is not, it is classed as psychological or psychogenic as some name it, but it is not life shortening.

FMD sufferers have problems where the messages to and from the brain start getting mixed up, as they fire across the neurons and synapses in the brain. Due to the bodies Central Nervous System “wiring”, which is the signal sending and receiving lines. The Central Nervous System suddenly has a disconnection, and the persons body stops moving and functioning correctly.

It is not totally understood why this happens, but this is the part spoken about when the “brain breaks!”.

The “brain break” happens when a person has gone through a traumatic event at some time in their past, but at that time their brain was not able to process all the upsetting information so hid it away in the back of the brain.
Until a time where the person is back to a stable happy life, then the brain takes it upon itself to take out all these surpressed feelings to start and unravel and deal with them.

Well the brain thinks you are happy again, so you can take it now yes?
No!
It’s at this point where in effect the “brain break” happens, making the brain stop working properly and misfiring its bodily commands. When it causes havoc with the central nervous system, sending the signals to and from the brain incorrectly.

We can have so much going on classed as functional, yet some sufferers may still have some actual real problems.
Only we find that once we are labelled as functional, all the Doctors class every problem we have as “Functional”! It is incredibly upsetting, and can take many more years for sufferers to be listened to, and to get correct diagnosis’ for other problems.

I myself alongside my FMD have Dystonia Blepharospasm, Hemifacial Spasms and Cervical Dystonia. I just had my Botox injections last week, so am looking forward to a bit of relief in the coming days and weeks.

I also have a lot of back problems, where I’ve had many steroid facet joint injections, along with a steroid epidural back injection. These are painful, but none have worked for long, the steroid doesn’t seem to work for me.

I hope this answers some questions.

Thank you 😊.

May 13

Check out what Functional Movement Disorder is 😀

Hi,

If you want to know more about the functional part of my disorder.

You can check out all the information at my other website.

www.functionalmovementdisorder.com

image

Thanks 😀

Mar 21

Mobility Scooters And Insensitive Car Drivers!

  
People must think that a disabled person popping onto a mobility scooter, and collecting the kids from school must be so easy!

What they don’t factor in, is the getting it out of the garage or shed, and back into the garage or shed on the return. It kills my back from stretching to do the locks, just getting in and out is a trial in itself! 

Plus then there are the rude insensitive car drivers, beeping their horns at you and showing the finger! 

I own a scooter that is allowed on the road, it is big, goes at ten miles an hour and I have tax discs. I even have the paperwork, from the DVLC with its registration number on. The paperwork for if I want to sell it on, so yes, I’m definitely allowed to drive my mobility scooter on the road!

I NEED IT because I am disabled! 

But when you get beeped at, it can make you jump. One jump can turn the steering, one turn can cause an accident. That accident can cause all sorts of havoc!

All I’m asking is that you show more thought, care and understanding for the disabled who have to use aids to get about. Just like you use a car to get about!?

You never know if you may become disabled one day, and need a mobility scooter too?

Umm and what if, it was all because you beeped a mobility scooter?  That gave them a shock, and made them jump? That one jump, that turned the steering. That one turn that caused an accident, that accident that caused all sorts of havoc? 

Just what if? 

If you were in that accident?

If your partner were in that accident?

Your child were in that accident?

All because you beeped a poor mobility scooter driver, who depends on that scooter to get her to where she needs to be?

So THINK!

What if……….?

Thanks as always for reading folks X.

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