I was diagnosed on the 10th November 2020, I have been having problems with my memory and depression,
I am having trouble with trying to explain to people when I get asked how I am feeling,
What symptoms are you having and what can I expect to have, am having trouble making decisions.
We just wanted to say hi and make sure you’re aware of the resources available on our website at Parkinsons.org.uk. as well as our free and private helpline, which is 0808 800 0303. Our lovely community here will have lots of advice and support to offer, but we just wanted to make sure you have as many resources as possible to help you in living with Parkinson’s.
All our best,
Hi @Lloydy1966 and welcome. There’s no defining with Parkinsons as we are all different, what can you expect ? Again, as we’re all different this isn’t something that you can say is the norm for the progression of the disease. I had tremors in my hands for most of my life and was under the Doctor for it, my diagnosis not coming to fruition until 2011. Prior to this I had a groin hernia operation which was the trigger for my onset of the disease. I too have some memory loss, balance issues, walking in a peculiar fashion almost as if to say i’m drunk, speech issues, my legs twitch when i’m sitting in that they will involuntarily knock together. Going to the other extreme without frightening you, full body tremor which includes head shaking, this is what my eldest brother had, it doesn’t mean to say that you will get this so keep an open mind. Considering the disease isn’t supposed to be hereditary I and a lot of others would beg to disagree.
What I will say to you is to adopt a positive attitude and not change your life style to accommodate it, you will know in yourself when something is on the change and needs tweaking. Speak to your GP Surgery to find out where your nearest Parkinsons Nurse is located. In the meantime go on Youtube to have a look at Parkinsons Exercise, there’s one on there produced in Australia which is very good. Read through other Introduction stories to help you in your quest for a better understanding of the disease to see what others in your position are experiencing. Take care and stay safe.
Hello, and thank you for your message, its very much appreciated for you to take the time to reply to me, am so frustrated and lost, knowing that what ever I do I can never get back to the life I once had and being able to change the outcome, thank you very much for your help and advice.
Hi @Lloydy1966 lots of symptoms listed on the NHS website here: https://www.nhs.uk/conditions/parkinsons-disease/symptoms/
I can tick off 8. Everyone’s PD journey is different though. Like you I have trouble explaining to people and so often simply keep it quiet…which is the wrong thing to do.
Thanks for link, I found talking to the ones who are close to you, really helped me, its good to get it out.
Welcome to this great group of people - I am a carer for my husband with PD. However the feeling of shock and depression is what not only those diagnosed feel but their loved ones also. I do not intend to presume your own feelings at this time but can say That Parkinson’s U.K. Helpline was our saving Grace when my husband was first diagnosed. Also check where your nearest hospital that has a specific Parkinson’s /neurology department is, if it’s a hospital of excellence for the treatment of Parkinson’s all the better. Get your GP to refer you there for your care snd support, not all areas have Parkinson’s nurses. If you’re going to have to travel for your care take the time now to check out services. Meantime keep doing what your doing speak to As many people as you can it helps. As others have said no one can answer you as what to expect. Someone said recently in the not too distant future Parkinson’s Disease will become an umbrella term (it kind of is already) for a number of named disorders with similar but also different problems. Only time and working with the support of professionals will it become apparent where your symptoms fit into this huge puzzle.
Your GP should be able to help quickly with regard to depression, don’t let that run away with you and exercise as best you can as this seems to be the best remedy for all, Particularly Parkinson’s sufferers. Hope to see you back on here in the near future - take care
Hi, thank you for your time and advice, it’s very much appreciated, it’s difficult to know which way to turn at times, am still trying to hold down a professional career which I have been doing for over 15 years now, I have noticed that my memory is not very good I find it hard to remember the simple things, which sooner or later is going to have an impact on my job, which is very worrying, it feels like one thing after another at the moment ( sorry to go on).
Thank you for replying to my post, take care and stay safe.
Hi Raynor, it appears as though you haven’t been welcomed to the Forum. We just want to be sure you’re aware of the resources available to you at Parkinsons.org.uk and at our helpline at 0808 800 0303.
We hope you’re enjoying your time here, and let us know if we can be of assistance.
All the best,
Hi, I hope this post finds you well, totally appreciate where you are coming from regarding career. I’m in a similar situation, I have some workplace adjustments, fatigue is a big one for me and find the lack of sleep doesn’t help either. I have settled into a pattern with my focus starting very early in a morning which hasn’t been in an issue working from home in lock down. I purposely avoid mid afternoon meetings and take a break - relaxation or a walk, which then enables me to focus for some additional time later in the day. My job is quite full on, I have realised I can no longer do 125mph and accepted this and it’s okay. If I don’t finish something it’s not because I haven’t tried. My motto don’t lose a day worrying about a day in the future! In the short time I have been diagnosed I am getting to grips with a) accepting this diagnosis but staying a glass half full. There is some great advice on this forum, staying active and staying positive. I found a link for YOPD and joined a zoom meeting, first one and was really good to share, I don’t know how to copy a link in from another page here but if you find the thread for YOPD we talked about work/career, stay safe and take care