I was first formally diagnosed back 23 Nov 2020, after being referred to Addenbrookes from N&N hosp in Norwich. although i think i may had “parky” for some 12 months prior to the formal diagnosis. MRI’s and X-rays show nothing
I am 67 been retired for some 7 yrs, i appear to have the “frozen gait” variety, which I find very frustrating. I have had a few falls where I’m out thinking my feet….der,
Although I was desk bound for the large part of my career (oil & gas new build platform Contract management), I have been always been very active on refurbishment of properties
We sent 2 years gutting and rebuilding my bungalow, for the future after i started retirement…….I had just taken up golf, so now i find the whole thing very debilitating, as i find “getting going’ a problem.
My wife is so good at making me slow down and think first, never a trait i was good at !!!
I have been on madopar from 65mmgs x 3 to 250mmgs x 3 per day, currently 125mmmg x 3 a day and I am currently awaiting a call back form Addenbrookes to see where i go from here as Madopar does not seem to have much of an effect
I think things are starting to move forward shortly, so this is just an “hi, I’m here type intro”
Hi Bobb,and welcome to the Forum!
You’ll find a caring community here that is brimming with helpful experiences and advice, as well as humor, art, music, and lovely creative expression by PWP, carers, and family. Make sure you’ve taken a look at Parkinsons.org.uk for loads of useful resources, and be aware you can call us free and confidentially at 0808 800 0303.
We hope you’ll find your time here rewarding as you get to know this amazing community.
All our best,
Hi @bobb, Welcome to the Parky Forum. I was under Mr Buttery at Addenbrookes(I was living outside Peterborough at the time, i’ve since moved to Devon on the South Coast), it may be worth speaking to your Consultants Secretary to tell them that you’re unhappy with Madopar to see if he can put you on something else. Madopar isn’t for everyone as everyone who has Parky is different as you will discover on the forum. Personally I get on with it, taking 4 x 250mg every day.
As I tell all newbies to the forum, don’t change your lifestyle because you have the disease, just do what you usually do on a daily basis, you will soon find out what you can and can’t do as time goes on. It may be worth finding out from your GP Surgery if you have a Parkinson’s Nurse nearby that you can speak to while waiting for your appointment to come through. The Parkinson’s Nurses I find very helpful in that they get things moving. Take care and stay safe.
Hello Bob, thought I would add my ‘welcome on board’ to the others. I loved your comment on out thinking your feet, which struck me as a very apt description. I too have a feet freezing issue, some days worse than others and if any of the following helps feel free to use.
- Look for triggers that make it likely your feet stop. In my case things like the door bell or phone ringing and I have to move fast to answer. Another can be when carrying something as concentration is split between walking and the reason for the walk such as putting something on the table. If you are aware of such triggers, then you can consider options to manage them.
2.It helps to look ahead rather than at your immediate surroundings especially when going through doorways which are notorious for stopping you in your tracks
- Not easy but try to concentrate solely on walking and not let other people or things distract you.
- Doesn’t particularly work for me but rhyming counting is a well known technique as is using music or any form of regular beat.What does work for me and don’t ask me where they come from as I couldn’t tell you, but swinging both arms together up and down a couple of times sets me off as does kicking something light across the floor- I haven’t tried this outside.
5 it’s less of an issue when pushing a shopping trolley or small trolley I use st home to carry things between rooms. Using the same principle I have been wondering about using a rollator but not made a decision yet.
- Finally the best piece of advice I was given is be aware and as soon as you realise you’re feet are likely to freeze stop and don’t attempt to walk. Give yourself a moment to refocus and start again.
To end I would say don’t let it get you down. A small story for you. Some time ago when staying with a friend we went into a small, very full souvenir shop. It was asking for trouble really and sure enough as I came through a narrow doorway I stopped dead with a queue quickly beginning to form behind me… I said something like sorry folks I have Parkinson’s my feet will move in a mo. They started to ask questions I said if they didn’t let me concentrate we’d be here all night. My friend came back to field the questions while I attempted to refocus and suddenly I was off accompanied by a spontaneous round of applause. It ended up being a highlight of the day!
Good luck to you and if you find a technique that works for you, please share.
@bobb welcome to this happy forum. I see Mr Roger Barker @ Addenbrokes and was on Madapor for a short period of time, when Sinemet was in very short supply. The difference was very noticeable so after 2 weeks I emailed him direct and somehow he managed to find supply of both Sinemet tablets I required and got them to me. As @cruisecontroller has said not all meds work for everyone and your neurologist will know this so it is really worth getting in contact with them either directly or via their secretaries. A change of meds may be the solution but they are best placed to guide you and help you find the right meds and routines for you.