DRD tests, dystonia

More than half way down – eek!

I have managed to get more than half way down on my magic yellow ones (aka Sinemet) and it has been a lot less traumatic than  I expected. Compared to how my body is when it misses one or two normal doses by accident or is dealing with illness, it is coping quite well. Though just because it is coping, it doesn’t mean it isn’t protesting.

  • I am slower
  • My right foot turns in and walking is painful as I end up walking on the side of my foot or tiptoe. I forgot all about tiptoing until I had reduced by 1 pill. I remember tiptoing at work pre-diagnosis but never thought it was a dopamine related thing.
  • My toes curl under under more
  • My left arms favourite position is bent while my hand’s preferred position is curled. It isn’t fixed most of the time but it has had  moments of clawing with an added twist. One finger sticks up but luckily it isn’t the middle one. That would be extremely embarrassing in public.
  • I freeze more and my right leg refuses to listen when I say move. It is a bit like trying to get my Jack Russell to do something when he has his own agenda. However much you yell at it, it doesn’t happen until physically moved or it decides it wants to. Mind over matter doesn’t work!
  • My neck is tense and is pulling. All muscles in my shoulder blade are protesting.
  • Abs feel at times they are doing sit ups on their own.
  • Nausea is back in full force.
  • Forget about writing unless you have an electron microscope.
  • Talking is hit and miss, whether the required word can be said. If my tongue and lips see it as an impossible tongue twister, it becomes a game of charades or guess the word from a description. Simple questions the hardest as the tend to require specific words, where as a ramble can be made of manageable language.

Reducing my yellows has highlighted that I am better in the mornings and sleep gives me a boost.  Siestas are a daily requirement.

Cutting down again tomorrow but that is for another day.

I still have got plenty of snuggly, loud socks and I can still drink tea while cuddling my dogs so I am still smiling.

 

P.S This is late being published – sorry!

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dystonia

Juggling diagnosis

In less than a week,  I will have a test that could change everything and nothing at the same time. Ever since my London appointment, life has been off kilter and as much as I try to push it to one side and  forget it, it niggles. I went there with the expectation of discussing yellow ones, genetics and DBS but I came out with my diagnosis thrown up in the air with talk of young onset Parkinson’s Disease and a bit of functional neurological disorder (courtesy of a tremor induced by the fear of having to talk to another neuro and looming DBS talk – more of that another day :/). It feels like all the balls have been thrown up in the air and you are waiting to catch one but you are unsure which and when it will fall. It puts you on edge.It sends you straight back into limboland. Having spent years there previously, it was a place I did not want to revisit. Having a diagnosis –  a name – helps so much in grounding the mind. You can accept it, adapt and move forward to live your unique life. Being in limbo makes you question every little quirk and symptom. Is it DRD, PD or nothing at all but a glitch in the system. You begin to not to trust yourself. It drives you crazy after a while because no matter how you distract yourself, it doesn’t take much for the uncertainties to creep in. Evolution  really needs to design a mute button for thinking!
A DAT scan  will rule out YOPD, leaving DRD and decisions of whether to pursue more confirmation with lumber puncture and phenylanine loading test will be have to be made.These require coming off my magic Sinemet which is a horrendous and frightening prospect. Being older than usual with progressing symptoms I don’t fit the classic DRD criteria but with the dystonia and lack of tremor I don’t fit YOPD either. In my heart, I feel it is DRD with a twist, antagonized by vasculitis because of the diurnal fluctuations and improvement with sleep I experience.  The doubts creep in though with  freezing episodes, micrographia and voice issues among other things.  There is also an added twist in the tale with research coming out that GCH1 DRD causing gene is also linked with PD so you can be really unlucky and have both.
Ultimately, the test could alter everything and nothing. If it is PD, I will carry on taking yellows and carry on living in my own wobbly way with the bonus of at least people have heard of PD. They may not realise it isn’t just an old fogey disease but they have heard of it. This forms a platform for awareness campaigns like #1in20parkinsons. PD support groups are also available in most areas. If it is DRD, my wobbly life continues with a few more decisions to make with the bonus of may be by symptoms will reach a plateau.

Only time will tell which way my journey will go next ….

#DRD # parkinsons awareness #onein20parkinsons #dystonia

Uncategorized

Writing a doctor would be proud of!

I love writing. I always have ever since I was a child. I always had a notebook with me to scribble down thoughts and stories whether I was at home, on the school bus or out and about. There is nothing as like grabbing your favourite pen (usually purple) and writing down what enters your head  letting the words appear on the page. For me, the best time to write is the middle of the night as I wake from  a dream-like state. Words. sentences and even paragraphs form so much easier when you are not consciously concentrating on it. My best essays were done based on midnight ramblings. Last night, I couldn’t sleep and found a pen to write a letter to my dystonia like some others have done very eloquently.

dear dystonia - Copy (2)

My writing was terrible. Even a tiny spider would struggle to read my words. The lack of sinemet and dopamine meant I could no longer communicate with my hands to do I wanted them to do. I have an app on my phone to write with and it is used more and more but it is not the same. Words do not flow and thoughts become disjointed in the delay of typing them because an app requires you to fumble about turning on the phone and finding the app then adding new pages etc. Sometimes the  ideas have faded by the time the page opens.It is frustrating and  I struggle to accept it . I miss the freedom and spontaneity a scrap of paper and pen gives you. Your brain does nt have to think, writing just happens

An old notebook shows how much my handwriting has changed on the last 5 years of wobbliness.In 2011, I was studying a fantastic literature course to keep me busy while I was off work while having treatment for vasculitis. My writing was normal and was done without a thought.

original writing

My handwriting began to get smaller the more I wrote.

big to small

A quick consultation with Dr Google triggered alarm bells as micrograghia is a common symptom of Parkinson’s Disease. I had already been told I did not have PD, despite other common symptoms such as freezing, tremor and no arm swing. It was enough for me to ask for a Sinemet trial. Luckily, I have a lovely neuro who was willing to give it a try. Immediately, I noticed the tremor in my hands calmed and my writing reverted back to its original size. It was amazing!!!!

An increase in meds and a final diagnosis did improve writing for longer so I could complete my course.

Roll on a couple more years writing is becoming more of a problem as the windows in the day my Sinemet works gets shorter and it does n’t take many sentences before it becomes an unreadable scrawl.

That said, it is  a daily miracle when my yellow pills perform their magic so I can pick up a pen and write freely with the added bonus of it being legible, not only to minute spiders with magnifying glasses or doctors.

At other times, I am so pleased I live in an age of text, smartphones and PCs ….