First post-diagnosis appointment


#1

Hi all

I was diagnosed on 17th July this year (age 46), have since had an MRI and DaTscan and have my first appointment with the movement disorders clinic next Thursday.

I've done a bit of reading - although not too much so I don't scare myself silly, but want to go to the appointment a bit better prepared than I am now.  I've been making a note of symptoms I'd like to mention, but has anyone got any tips on what questions to ask, what drugs they might recommend (and whether I'll have time to consider my options before deciding on a path to take), people I could ask to be referred to etc.?

Would really appreciate advice from people who have walked this path before...


#2

Hi MrsMcL

Sorry to hear you've joined 'the club'. Feel free to post anything on here.

Drugs you might be offered are, Selegiline or Rasagiline, which are both dopamine inhibitors. They help to stop the breakdown of dopamine already in the brain.

Another drug they might suggest is Ropinirole, which is a dopamine agonist. This activates the brain to produce more dopamine and the dose is gradually increased from 2mg. per day to up to 22mg. over a period of time. A word of caution when taking this drug though, as it can have several bad side effects. (Worth reading up on). Some people are fine with it, but others have had to come off it, including me!

One more drug might be Levodopa, but that is usually given later on and to older people.

Your neurologist should let you decide whether or not you want to start taking any medication, depending on how you feel. It's best to start on low doses to see how you get on. Everyone with Parkinson's is different and we don't all react to the meds. in the same way.

People you might want to be referred to are, a physiotherapist (usually 6 sessions), a neuro-psychologist (again 6 sessions), a speech therapist and also the PD nurse, (if your hospital has one). Another very useful person is your local Parkinson's Support Worker who provides practical information and aids, on living with the condition and has a wealth of leaflets to read. Mine came to the house and explained everything to me and my OH, which was very helpful. There is probably a local PD Group that you can join as well, if you feel like socialising with people in a similar position. And of course you can always ring this site's Helpline if anything is bothering you.

The main thing is to try and stay positive and enjoy life as much as possible. Hope some of this helps and hasn't scared you to  death!

Twinks.


#3

Thank you Twinks

That's really clear and helpful - with some concrete things to research before I go.  Hurray for the forum.

MrsMcL


#4

You're welcome. I'm sure others will have helpful advice too.

Take care.    Twinks.


#5

Hi Twinks,


Re:   " Selegiline or Rasagiline, which are both dopamine inhibitors. They help to stop the breakdown of dopamine already in the brain."   They are MAO-B inhibitors which as  you say stop the breakdown of dopamine in the brain.  (by blocking an enzyme whose job is to mop up excess dopamine which of course PWP's have not got an excess of )  I've never heard them described as dopamine inhibitors - perhaps dopamine breakdown inhibitors might describe them?   See the PD UK  booklet  "Drug Treatments for Parkinson's" downloadable from this site.


#6

I know Eileenpatricia. I was trying not to be too technical, whilst describing their effect. Have slapped my own wrist!!


#7

Thank you both - will let you know.  Got it all on my list...


#8

Hi MrsMcL

I'm also 46 , diagnosed spring this year  and have been on 1mg Rasagiline for 5 weeks . No side effects so far ... which I'm very pleased about as there is a huge list of possibles,   and an  improvement to stiffness and slight improvement to tremor , which admittedly is quite mild .

Rasagiline seems to have a few advantages over the earlier Selegiline

good luck!


#9

Hi Mrs mcl

I'm also new to this, I was diagnosed last year at age of 43. I'm on pramipexole .35mg three times a day and it's helped me so much. I'm only effected on my right side at the moment but it's frustrating not being to do daily tasks that I took for granted. I'm apparently the youngest patient at Grimsby hospital with Parkinson's so it's nice to be able to chat on here with my age group. I wish you the best and hope medication helps you as much as it has me. Take care