Hi all
Briefly I’m Bill and have 56 years under my belt, been in Construction all my life and know would appear to have new challenges ahead.
I’m all new to this and am just scratching the surface to find my feet.
I’m awaiting a follow up scan at Addenbrookes just to confirm my PD prognosis.
If I’m honest I knew I had a problem some years before but put it down to wear and tear of having a lifetime of Building work.
It started with my right hand not fully doing what I needed it to and eventually to my right foot/leg shaking and having joint pain.
After chatting to my Physio he suggested talking to my GP which I did, who then sent me to the Neurologist at Addenbrookes in Cambridge.
I had an appointment in late March which was cancelled due to Covid. I thankfully had a new appointment in September and was advised after going through the various tests the PD was the probably the cause of my symptoms.
Again if I’m honest it came as no surprise as like most people I had taken to the Net to look for probable causes.
I’m a very active family man and will take all the new challenges in my stride, I’m very lucky to be surrounded by a loving family and tremendously supportive friend and work colleagues.
Looking forward to becoming an active member of your community and also feeding of all new knowledge you guys have…
Stay safe and keep smiling…x
Hello and welcome marmitekid
I was diagnosed 2 years ago. There is a lot to take in and get used to. My initial advice would be to take things easy but try to remain active both mentally and physically.
Take care - stay safe - best wishes
Hi @marmitekid and welcome to the Forum,
I’m sure that you will get plenty of support from the Forum Community.
Please have a good look through our website and you will find out lots on information about working and having Parkinson’s. There is lots of information too about keeping active , and it’s great that you have the support of your family, friend and work colleagues. There is information on our website that may be helpful to them and give them a little bit of understanding about Parkinson’s.
You can give our helpline service a call and speak to one of our advisers about anything and they can put you in touch with your Local Parkinson’s Adviser, give you information about any Benefits that you may be entitled too, the number is 0808 800 0303 Monday-Friday: 9am-7pm, Saturday: 10am-2pm.
Take care and again a warm welcome,
Lorna Moderator Team
Hi and welcome, I’ve only recently joined the fourm myself and found lots of resources but even more messages of support, understanding and well wishes, I’m sure you will find lots of support here, take care
Hi Justthisguy
Thank you for your advice and yes there is a lot to get your head around.
It’s great to know that a friendly ear is only a click away…
Stay safe and keep smiling.
Hi @marmitekid and welcome to the Forum. I too use to be in the construction game, I was a delivery driver for Hanson Brick as it was then and so it is possible our paths have crossed so to speak. What I tell newcomers such as yourself is not to change anything about what you do on a daily basis, keep to your normal routine. You have Parkinsons, it doesn’t have you, it is an irritation that you keep on the back burner. For what it is worth you can scare yourself whitless reading about the condition on line, this is the only place where you will get responses from people who deal with the disease on a daily basis and it is here that you can ask the questions to which you will get answers. We are all in this together and helping people is what we do to come to terms with it. As I said earlier, don’t change a thing about what you do, you will know when things change in your life, it won’t be instant but will be gradual. Keep a positive attitude and if you’ve got a tremor about you make a joke about it, be able to laugh at yourself, it goes a long way. Just be you, hopefully the challenges in your life you talk about are years away, in the meantime enjoy your life. Pop in here and keep us updated on your progress and as I said before we are always about if you need to talk about any aspect of the disease. Take care and stay safe.
Les
Just stopped by to add my hello to the others and you’ll not go far wrong if you heed the words of cruise controller. Parkinson’s, as you will discover, will demand a lot of you as it can never be far from your thoughts but in the early days it can overwhelm and be quite a frightening prospect as you face an uncertain future. You will find your own way to navigate a path through it all, we all do in one way or another. For me the strongest tool by far I have at my disposal is to stay positive and from the way you write I think this may be well be your way too. It has served me well since my diagnosis almost 11 years ago and trust that if that’s your way, it will do the same for you. I note you are not asking anything specific at the moment and that’s fine but in case there is a little bit of you unsure about what happens next or trying to keep a brave face for the family (Parkinson’s affects everyone not just the person carrying the diagnosis) or even just just out of curiosity or interest you may like to have a look at some of the other posts and the responses in this section - here you will quickly discover common themes in both worries and concerns and responses (I have to admit to being responsible for one or two myself but don’t let that put you off !!) which I hope you will find reassuring if there is that little bit of you that is thinking the future is one big black hole.
Glad you found us early on and come back any time, for anything. Take care.
Hi Marmitekid,
I see you are around Cambridge. There is a local Branch of Parkinson’s. Whilst we are unable to meet due to COVID-19 restrictions we still produce a newsletter and have fortnightly Zoom “Cuppa and Cake” meetings. Have a look at the website https://www.parkinsonscambridge.org.uk/. There is a list of the Committee Members. Give one of us a call or email.
Keep strong
Keith
Hi to you all
Thank you for all your replies, I really am overwhelmed with the response and look forward to having more conversations with you all.
Stay safe and keep smiling
Bill.
Hi Bill, sorry to hear your diagnosis. You sound like you have what I call ‘classic’ PD. My advice to you would be to hold off meds for a while and when you do decide you need meds stick with the old fashioned levadopa, ie sinemet or madopar. I have had PD for 39 years, juvenile onset, and I believe a lot of symptoms people now present with are side effects of modern drug therapy. Just wanted to put that out there, before you’re put on a concoction of drugs. I am 54 now and still function well with just sinemet (low doses throughout the day and slow release at night). Sally
Hi Sally, thank you for your reply.
I started on Sinemet a week last Saturday and at the moment am introducing them to my body as advised by the Dr.
I decided to start on meds as I’m awaiting a scan to further my diagnosis and am concerned if thing’s in the Covid world go pear shaped it would affect the hospital appointments again.
I will eventually when on full dose be taking 2x 12.5 mg 3 times a day and as of now haven’t experienced any side affects(I guess I will in time).In the early days of experiencing my PD symptoms I was always mind full of my job as I wasn’t getting any younger and aches and pains where par for the course so to speak and took longer to go than when I was younger.
I’m now starting to realise that PD affects people in different ways and everyone’s journey is different with obviously various drugs etc associated to our needs .Any advice is greatly received.
Stay safe and keep smiling.
Bill.
Hi bill and all
My name’s Annabella I was diagnosed with Parkinson’s plus by Addenbrooks hospital two weeks ago I am 36 the scan also shows I have cortisol basal syndrome. I am waiting more appointments this week just feel scared and not sure what’s happening.
.They have put me on three meds just wait gp to prescribe. Also have to see neuropsychometry and movement disorder expert. They wanted to do mri but can’t because of I have a pacemaker so. Hope all goes well bill x
Hi Annabella
The advice I received on this forum was invaluable to me…
Just take your time to take in all the info you are given and adjust your lifestyle etc accordingly.
I’m back at Addenbrookes tomorrow for an MRI scan to further my diagnosis.
I also started taking meds about a month ago and have noticed I’m a bit quicker in my movements and a bit more comfortable with life in general.
Good luck going forward.I’m sure things will get better .
Keep smiling and stay safe
Bill.