Meeting The Parkinson’s Disease Specialist Nurse

The Parkinson’s Disease Specialist Nurse

I read in our local news that local people had managed to fund-raise enough money to convince the NHS to provide a Parkinson’s Disease Specialist Nurse in Crewe. Which is brilliant news, because I only expect to see the Consultant Neurologist twice at year at the most.

However the existing nurses in Stoke had not yet been in touch and I had no way to contact them; when I went to the Speech Therapy class, Amy the original Speech Therapist who came to my house in August last year was there and she got in touch for me.

Yesterday I had a call from one of the the Parkinson’s Disease Specialist Nurses who gave me the best advice about what to do to transition my medication.

So from today I start the Ropinirole (1 x 3 per day for a week) which will be built up to the therapeutic dose over 4 weeks and if that suits me then the next prescription will be for a stronger dose (meaning only 3 per day not 12) and possibly a slow release version at one a day YAY!!

Louise also advised me not to start the Amantadine Hydrochloride in order to keep things clear and see what works first. Good advice!

I also expect to be meeting Gill, the new Crewe based Parkinson’s Disease Specialist Nurse in Mid February at Leighton Hospital. In fact it was Louise that I met as Gill was still getting to know the whole area.

Speech Therapy
I joined a small group of 4 men, similar in age to myself (66) all of whom had been diagnosed a lot longer ago than me; one was 9 years ago and was clearly the worst of all of us with very noticeable tremors.

We made lots of noises together and individually which will exercise the neck muscles and vocal cords, hopefully if I do my homework diligently and THINK LOUD my voice will improve and I will be able to talk more normally again. We were all individually videoed at the end of this first session for about 2 minutes just talking about jobs and family, for a ‘before and after’ so we will be able to see where we’ve come from.

It’s most frustrating, not being able to talk properly – what happens is that my voice has lost both pitch and tone, because of the PD – especially when I used to run seminars and give large scale presentations in my previous job.

So over the next 5 weeks I hope I will be getting back to communicating fully again.
Next Steps
Neurologist Appointment
My second appointment with the Consultant Neurologist for my Parkinson’s Disease was yesterday. These are the questions and notes I prepared before meeting him.
Q. As I don’t feel as if the Pramipexole is actually doing anything much for me, what different drugs will help to stop or reduce the symptoms?

A. If the Pramipexole is not working, we can try a different drug which is also a dopamine-agonist called Ropinirole and I must therefore reduce the dose of P before changing over in about 4 weeks time. This is the only way to avoid DAWS (dopamine-agonist withdrawal symptoms). In addition he prescribed Amantadine Hydrochloride to combat the fatigue of shuffling about and tripping myself up all the time.

Q. What diet will help, do dopamine-rich foods actually help?

A. Talk to your Parkinson’s nurse about this, I will ask her to make contact as soon as possible.

Q. MRI report?

A. The only signs were age related so all is OK in that respect.


General Notes

My hands are stiff and tremble more than before – noticeable in my thumbs at rest and I have a non-stop “buzz” just about everywhere, fine manipulation can be an issue at times.
My feet are stiff and my toes quite painful; I’m also tripping over my feet more than ever which stick to the floor especially when I try to move sideways, and I’m shuffling quite a bit, but I’ve not actually fallen over since my diagnosis, although I’ve had quite a few near misses.
I find I’m overbalancing at times when standing still and if I start to move backwards, I can’t easily stop.
I think some symptoms are worse than they were, the twitch in my legs, which usually starts as if I’ve had an electric shock is worse and my left foot and calf had started to swell up quite badly and painfully at times, but not so badly since reducing the dose from 6 to 4 per day. My right ankle has swollen and seems to give way a lot too.
Constipation was also an issue, so I’ve increased my dietary fibre to try and help it; also not so bad since reducing the Pramipexole to 4 per day.
Swallowing is an issue still but not choking a much. Speech is an issue still, although the SALT team say there is a speech therapy group starting in January 2017

Needless to say, I didn’t get the new prescription until after Christmas and the pharmacy didn’t stock the required strength of the Ropinirole, so had two trips to collect the prescription.

The two new ones together would eventually mean that I had to take 15 tablets per day for the Parkinson’s symptoms! And that doesn’t include what I’m already taking for other stuff (Blood Pressure and Prostate).

Once I realised this I wasn’t too pleased but knew that I had to reduce the Pramipexole first, so it wouldn’t happen too quickly. What I needed was to speak with the local Parkinson’s nurse to understand this better.

In the meantime I received an appointment for the first of the speech classes in Mid January, actually earlier this week, and for the next 5 weeks so I should be able to speak more clearly again soon (for which my wife will be pleased).

About My Parkinson’s Medication: Side Effects
Although I have been taking the Pramipexole since early August, I haven’t suffered the side effects that others report, until now.

Since I increased the dose to 6 per day (3 x 2 per day),just over a week ago my left foot has been swelling up quite badly and painfully, whilst I’ve also had some swelling in my right foot.

The dyskinesia, or uncontrollable movements, most notably the twitch in my legs, which usually only happens when I’m resting, also happens occasionally when I first get into bed.

Constipation has also become an issue, so I’m increasing my dietary fibre to try and help it.

These are all listed as common side effects, which are tolerable if I thought the pramipexole was helping in some way, but I’m just not sure of that… so I’ve decided to reduce the dose to 4 per day (2 x 2 per day) to see if anything improves.

I’m also still tripping over my own feet which stick to the floor when I move sideways, but I’ve not actually fallen over since my diagnosis, so that’s not too bad.

I have another appointment with the Consultant Neurologist coming up in about 2 weeks so I need to list some questions for him.
My Parkinson’s Disease November 2016
Over the last month or so, I think some of my symptoms have become a little worse than they were. Although I think that my mood has continued to improve, the twitch in my legs, which usually starts as if I’ve had an electric shock is as bad if not worse and my left foot has started to swell up quite badly and painfully at times.

I’m also still tripping over my own feet which stick to the floor especially when I try to move sideways, and I’m still shuffling quite a bit, I’ve not actually fallen over since my diagnosis, so that’s not too bad.

I don’t know whether the pramipexole tablets are doing anything yet, so I decided to increase the dose to 6 per day (3 x 2 per day) from yesterday so I’ll see if anything happens.

Yesterday I had an appointment with the ENT Consultant who runs the Voice Clinic along with the Speech and Language Therapist; the good news is that there is nothing sinister in my throat although my vocal cords are asymmetric which may be part of the volume problem. I should be starting to do some work with the Therapist in January 2017.

Interestingly the camera which was inserted through my nose also recorded the whole session with me trying to hold a note and I watched the playback! This video will be retained for future comparison if I ever have to go back again.


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