Newly Diagnosed

About me Introductions and personal stories
21

I suppose it’s now time to start talking Drugs. No not smack, crack, goof balls or Red Devils.
ha ha. :sunglasses: :sunglasses: :sunglasses:

My consultant has recommended Madopar 50 mg - 12.5 mg.

Does anyone else take this and are there any side effects I should look out for? I know Medication reacts differently for everyone, but I have read in this forum some bad problems people have had with their medication. Is Madopar common for most PD patients, just like Paracetamol is a popular painkiller? Any advice would be helpful.

Having said that though, my main intention is to follow my consultant’s advice. But as they say, fore warned is fore armed.

Thanks.
Martin.

22

Hi Martin, If you check back through what has been posted on here you will see that both @Jane_L and myself are on Madopar with me being on 5 x 250mg. Yes it does appear to be common for a lot of people newly diagnosed and there 's no side effects with it as far as I know and i’ve been taking it since 2011 !! Wishing you well and stay safe.

Les

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Thanks @cruisecontroller for your reply. My bad, should have looked before I leapt. Glad for the info.
Martin

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No problem Martin, we all make mistakes, I believe it is called being human !! LOL I have memory lapses so you’re not alone. All the best to you.

Les

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You are starting on a low dose. I did too and found it helped me enormously. After a couple of years of mobility problems, I was suddenly symptom free.

26

Thanks @cruisecontroller. I had something similar a few years ago. I called it having a senior moment. The lady I was talking to said she called it a CRAFT moment. Does anyone know what she meant? I will let you know in a couple of days if no one gets it right.

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Thanks for info Jane_L. It obviously helped you a lot. I don’t really have mobility problems as such, just walk slower than I used to. It’s just that I have this shaking in my left arm/hand. Hope it helps with that. Though, as I probably said before, I haven’t been put on it yet because the consultant said my symptoms are mild in comparison to others. The shaking also doesn’t help with playing the keyboard. Started to learn about a year or so ago, then this happened and it knocked everything for six. Oh well, just have to persevere with it and see how I get on. Look at me now, rambling on about all sorts of stuff, and all I wanted to know was, is Madopar OK?

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Not quite as funny as I thought it was when I started this. CRAFT stands for “can’t remember a flipping thing”. Had to tone it down a bit because of forum standards. But when the little old lady said it I couldn’t stop laughing. Wasn’t expecting that to come out of her mouth.

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29

@LIVERpool1956, I know exactly where you’re coming from having been a lorry driver in my working life !! At least the lady told you how it was and straight to the point, just love it, I can imagine her saying it to you !! No good beating about the bush is there Martin !!

30

Hi Shirl123gym, I am brand new on here and feel a bit of a fraud as I am still waiting for a diagnosis but I can still type, thank god I don’t have to reply with a pen… Reading your post I feel you other half is having major depression which is understandable. he might benefit from a thing called ‘Andys Man Club’ they run in most major cities in the UK and meet every Monday from 7 to 9pm , since lock down they have been meeting on line on video chat so can be done without leaving the house. This club is not about parkinson’s but helps guys with a kind of supportive brotherhood and most of the 1000 men that use it each monday get a lot out of it… please ask him to check it out and I hope it helps.

31

Well hasn’t it been a long time since I’ve posted on here. A lot of water has passed under the bridge since then.
So where do I start? Meds are working OK. No more psychologist for travel anxiety, still don’t like getting in cars though. Litigation still not completed.
Now the good stuff. Even though I can’t really sing all that well, I’ve joined a couple of singing groups. No, we’re not thinking of going on X factor or Britons got talent. It was recommended by a speech and language therapist. It’s to help with vocal issues, talking quietly, and swallowing problems. Stuff going down the wrong hole. Works as well.
Went to Cardiff to see my daughter and hooked up with a couple of PD groups there. Looking forward to going back soon. Signed up for a couple of trials, going to do a PD walk in Cardiff in September. Feel great, think that might be my PMA, Positive Mental Attitude. Or it could be the CBD oil capsules I am now taking. Don’t want to go on too much, but thought I would share this with you all.

It won’t get the better of me
This thing they call Parky
I still have a life
With my beautiful wife
I still have things to do and see.

Old Parky has slowed me down
But I’ll not be wearing a frown
I can’t walk very fast
Nearly always coming in last
No one said ‘twas a race into town.

I used to love doing DIY
Also cooking and baking a pie
But parky has stopped that
I can’t even brush a mat
But can still poke Parky in the eye.

Inside I still feel the same
But old Parky will not play the game
So now I’m changing the rules
I’m picking up and using other tools
It’s my life is the name of the game.

Diagnosed with Parkinson’s one day
So that’s why my arm shakes, okay
With a stiff upper lip
I said get a grip
Parkinson’s is going to pay.

What new tools do I have in my pocket?
Not a hammer or spanner or socket
I use crutches to walk
Singing groups to talk
For my brain, puzzles help to unlock it.

I sign up to take part in trials
And join events to walk many miles
I do what I am able
So I can sit at the table
And tell Parky you won’t take our smiles.

With the help of my new chums
Brothers, sisters, dads, and mums
We will all unite
In this long hard fight
And show Parky, we’re banging the drums.

It won’t get the better of me.
This thing they call Parky
I’ll sing, walk and shout
Until I’m worn out
But I won’t let Parkinson’s get the better of me.

Sorry its a bit long, hope you haven’t fallen asleep. zzzz

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32

Hello fellow newly diagnosed friends.
I got my diagnosis 3 weeks ago so everything is fairly new to me, having no previous knowledge of PD.
What drew me to this thread mostly was to find how close to me a couple of you are. I’m in Teignmouth.
A group has been mentioned and also reference to a P nurse, both of which I would be interested in. Is there a group meeting locally? It would be lovely to meet some new friends who are in my position.
Best wishes to you all x

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33

Hi Alfsnan,
We generally advise our forum community not to share their exact locations, for safety and privacy reasons. However, you can call our free and confidential helpline at 0808 800 0303, and our advisers there can help you find groups in your area. We also thought you might like to have a look at our website, specifically this section for the newly diagnosed.
Best wishes,
Jason
Moderation Team

34

Oh ok, thanks :blush:

35

Hi @Alfsnan there is a Group who were meeting in Newton Abbot may be you can get info on the group from the helpline. I went to one meeting but couldn’t get on with it. As for Parkinsons Nurse, mine is Sian Day, she’s based at Totnes Hospital & she was doing appointments at Teignmouth Hospital. It would be worth your while to get an appointment with her if only to get registered on her books. My Neurologist is at RDE, Dr Harrower and Aussie by birth but a great man. I also go to Southmead Hospital at Bristol as i’ve got a Deep Brain Stimulator fitted & I go there periodically for check ups. More recently I had my DBS battery changed for a Rechargeable one, my wife plugs me into the mains once a week & turns me into a bright spark !! LOL For the record i’m in Dawlish there’s a lady I communicate with in Torquay plus there’s several others about. Maybe your GP Surgery can put you in touch with a local group or may be Sian can help.

Les

36

Hi Les, thanks a lot for all this information, it’s really helpful.
I’ll try to find out more about the group meetings.
Linda

37

You’re welcome Linda, anything else you want help with just give a shout.

Les