Hello EmilyD
I have just read your post and felt compelled to post a reply quickly to tell you absolutely that whilst a Parkinson’s diagnosis is not something you would wish on anyone nor is it the disaster with no future, a large black hole where the only way is down that you are seeing at the moment. The first thing you must do is stop and draw breath. Ten days after diagnosis is but a second in Parkinson’s terms and whilst understandable, you’ve done what we generally caution newly diagnosed not to do that’s read everything you can find - you end up with not being able to see the wood for the trees, probably remember only the worst bits of what you’ve read and generally end up in a bit of a pickle. So let’s start again shall we.
First thing you say your symptoms are mild and it sounds like not a particular problem to you. Your diagnosis won’t instantly change that. In most, Parkinson’s is a slow moving condition and chances are it won’t make any difference to your life for some time maybe even years. When changes do happen, because it is often a gradually developing condition you have time to get used to things and adapt. You may in time need to do things a little differently but you shouldn’t change your plans, hopes and dreams because of your diagnosis.
For now just get used to the diagnosis and get through the initial few weeks and months while treatment plans and options are put in place - if indeed you need anything at this stage as your symptoms are mild.
There are few things worth knowing. Parkinson’s is a very complex condition and you will frequently hear it being referred to, certainly here on the forum, as a very individual condition, that is because you and I for example may well have very similar symptoms but their severity and impact can be quite different. This makes it very difficult to answer the question most newly diagnosed want to know ie what does my future look like. In December it will be 13 years since my own diagnosis and I still can’t answer that. What I can tell is that I enjoy my life, I still live alone and get out and about and you will find this hard to believe but it is true, I am actually quite content with my lot.
I can’t tell you how long it will take but you will in time find your own way to live with old Parkie in tow. Some use anger to rage against it and if that keeps them going good luck to them. Others spend time finding out about the latest developments while the search for a cure goes on. Again that’s fine if it works for you. My own way is to try and stay positive and you don’t have to read many of my posts to know how important that is to me because it works for me. You may not believe it at the moment but you will find a way that suits you. None of us want to be living with Parkinson’s but it is a fact for many and the key is living with it. It won’t be the life you envisaged but it is still your life and one worth living.
The reactions you described are not unusual it’s like a grief process, but you will be OK and come out the other side but you’ll have to take that on trust at the moment I think.
Tot
Hi EmilyD Tot has giving you good advice. I was diagnosed 2010 and it was only in 2021 after I had a fall that I found my condition was getting wors. Like Tot say’s enjoy your day/ each day juat take a breath and do what you can. Don’t look into how others are doing with PD. Get attive enjoy life. I did Tai Chi for 12 years but dut to balance I started tipping over even though Tai Chi is suposed to help, also used to do out door blowling not any more. So what do I do ?? try some thing else one of my friends told me about a Yoga course, So I say to you As one door
shuts another one opens, look after yourself keep posting.
Tot I think your reply to Emily is one that every newly diagnosed should read. Your post is so encouraging, positve and so true.
Having a 54 year old husband who was diagnosed in November your post has really encouraged me to be more positve myself with the whole diagnosis.
Emily you will get there and learn to accept your diagnosis. You are still very young to keep active which will really help your condition. Don’t bother reading up too much of other people’s stories, most will only post when things are tough for them so some will just want to have a rant and come across as being negative. However some will just be doing it to seek support and advice. Thankfully that’s what this forum is about supporting each other.
Although I don’t have parkinsons I am living with it with my husband and reading Tot"s reply has really encouraged me and made me realise me and my husband can still live our lives and enjoy it.
Hello Lizzieg
Thank you for your kind words. My replies are always written to the original post writer. There is usually an element of reading between the lines as all I have to go on is what the writer chooses to say, and it does of course reflect my own views and how I manage my own unwanted shadow. Having said that I will also try to answer honestly. I will never pretend it’s fun living with Parkinson’s but equally I don’t see it as the end of life with any quality or meaning. I think a lot of the time the skill in living with Parkinson’s comes from what I call managing the Parkinson’s brain. That is the negative voice that always shouts loudest when the going gets tough, is difficult to fight and can overwhelm. If you can recognise when that is happening and find strategies that let the voice of reason and positivity gain the upper hand, then you have a small but significant and potentially invaluable tool at your disposal. It’s not easy and will from time to time let you down - there are no 100% guarantees and it can often feel you’re living on shifting sands but that’s just part of cards fate has dealt. I’ve developed my own maxim by which I live and you will see it written time and again in my posts and indeed, others have picked up it and that is ‘I have Parkinson’s, it doesn’t have me.’ The other thing I do is never give Parkinson’s star billing, again this is something I write over and over - I am Tot first and I happen to have Parkinson’s. It is very gratifying when others like yourself, are able to take something positive from what I write. I thought it worth expanding on it a little here and hope it will help you and your husband to find your own ways to live in some sort of peace with Parkie whilst being creative with the challenges he will inevitably throw in your path thereby scoring a little victory that keeps old Parkie in its place.
My best wishes to you both.
Tot
Thank you so much Tot. I’ve just discovered all these lovely replies to my somewhat desperate post and it’s good advice you’re giving here, it has made me feel better and draw a breath! I’ve been putting on a brave face to friends and family and appearing to be a lot more positive than I am, but this has made me feel better. WHat I’ve decided to do, and have been doing since I last wrote is do a yoga class every day. I really love yoga so much. And yesterday I had an introduction to transcendental meditation that I’m going to start learning/practising (something I’ve meant to do for about 20 years). You’re right, there’s no point being anything but positive. I have one life and I have to do the best with it. Thank you for making me feel better!
Thank you Mary, it’s good to think about doors shutting and opening. Up until this point nothing bad has ever happened to me - I’ve never even had my heart broken, my mum and dad are still alive. I’ve always believed I’m immortal to be honest, and I’m one of those people who just slightly breeze through life, laughing away, working hard and doing everything. So this is such a shock to me! The idea that I won’t be completely in control, but. my husband (who is so lovely) says this could be the making of me psychologically, let’s see! Thank you
morning EmilyD how are you getting on. Don’t forget we are all here for you if you want to morn/shout/tell us your problems then rant on most of us on our site have been their / got the t-shirt. Keep posting get ot of your chest.
Thank you for thinking about me Mary. I’ve got my first meeting (online webinar rather than one to one) with my Parkinson’s Clinic at Kings this week. I’m really busy at work and home so currently going through a phase of trying to ignore the fact I’ve got PD! It’s so odd to have impending gloom hanging over me when I’m a natural optimist and it’s currently so mild. I actually keep forgetting I’ve got PD and then waking up with it flashing in my mind in the middle of the night. So I’m definitely on the look out for uplifting stories!!!
Hi Emily D When i was first diagnosed I was just like you, after thinking about I felt in a way privilege to have PD, don’t get me wrong I would sooner not have it. The thing is that when you tell folk friends family ect! they look at you and to quote my family doctor um’m you don’t look like you have PD Oh and what am I supposed to look like? Doctor well people with PD seem to have a gaunt look!!! Talk about tarring every one with the same brush, so after that I went on a mission to explain to friends jo public and as many people as i can what i knew and feel about having PD. At one time I played lawn green bowls so started here, had a tournament for “Parkinson’s” and because bowling comps are all about winning money I said every thing would go to Parkinson’s uk and it worked we also had a stall with all PD leaflets on, My GP when i spoke to my GP she told me that non of the doctors which there are about 12 or more at our surgery well she said not any of them knew much about PD. So all my mags which i get from Parkinson’s UK once read are passed on to my surgery. So it’s not the end of the world this is just our beginning get out there tell people you have Parkinson’s Its amazing that people know so little about out condition, yes they don’t see the nights we don’t have any sleep. they don’t see how stiff we are sometimes. and lots more, each day is different, It’s like when I had to renew my blue badge had a letter from my nurse to show them, but the still did not want to renew my blue badge so I put down on paper that its not about being able to walk 10/20 yards on the flat but when you have been sitting a while you have to get your body to work again. any way keep posting.
Hello Dorsetg
Since reading your post I have been wondering what on earth I could say to you that wouldn’t sound wrong. Bad luck sounds trite, how awful I can’t imagine how you cope with that is a bit of a ‘shock/horror’ reply, other things sounded pitying and I’m pretty sure you don’t need that. On the other hand I did want to reply. In the end, thought I would do what I always do and just say it as I see it.
First thing to say is that a number of us on the forum have a 2nd and equally serious diagnosis in addition to Parkinson’s, including me, but I’ve not heard of anyone having MS and Parkinson’s together. To live with your MS as long as you have is quite an achievement in itself and I’m guessing you are quite a positive person by the little you wrote - no-one could have blamed you if you went to war about the unfairness of it all even though we all know life isn’t fair. I do hope in the time since your diagnosis things are a bit settled for you now, as much as they can be and hope your Parkinson’s symptoms are mild at the moment.
It occurred to me that you may experience the same problem I have in trying to determine which condition is causing an issue at any given time. I also have normal pressure hydrocephalus and some of the symptoms that throws up can also be found with Parkinson’s. Trying to sort out which is which can be, shall we say, an interesting experience.
Anyway welcome to the forum and please do feel free to use it as you need whether that is information, somewhere safe to vent your frustrations or anything else - the support is here and you’re not on your own.
Best wishes
Tot
Blooming heck Mary1947, most of what you said rang true with me. Didn’t know you had PD, you don’t look disabled enough to qualify for a blue badge etc etc! I just decided one day, I’ve got PD anyone looks at me funny wondering what’s going on here I’m just going to tell them. “diagnosed with Parkinson’s”. Was feeling a bit of a devil one day, so when this guy said sorry I said, “why feel sorry for me, you didn’t give it to me did you”? I suppose that’s the problem with us scouser’s we can make a joke out of most situations. What’s the use in being glum, it’s not going to make it any easier for us to cope.
I know I’ve banged on about this in other threads but I’ve joined a couple of singing groups run by local Parkinson’s groups. Not a particularly good singer, but I have fun, meet other people and have a good time. Confidence is sky high at the moment.
Take care Mary and the rest of you on this forum. As Monty Python said, “Always look on the bright side of life”.
Thanks for the message you look after your self. I don’t think that I should join a choir as soon as I ummm sang a note I would probably be shown the door. Like you say take a leaf from monty pythons always look on the bright side of life.
Hi. I totally understand your concerns. I have PD myself. As a pd sufferer(is that a word?)
I can get very down. Some days my black moods make me depressed other days angry. I have no control over when it happens, i have been trying to find common demoninator. I have a good friend who lives next door who has become my carer. This has been over the last 12 months.she could tell you how hard it was to be around me at these times. She took it upon herself to look into the whole thing. She now understands so much of what i go through. Its like being given permission to feel what I feel. We still bang heads , but usually end up laughing. Some of the things we complain about seem so stupid, but we have no control. Having someone close who just gets it that you are truly feeling that way makes such a difference. This only came about by her taking it upon herself to read about it all. So youre on the right road. Keep asking and looking it up. Life will be easier in the long run, because youll have a better understanding, and hell feel safer.
Well today I was diagnosed as mild PD and I’m 53 and it’s been with me to a degree with handwriting and typing worsening over time. I have a dopamine scan and Noam Mri coming. Then medication. Had the afternoon off with the wife to try and come to terms with it a bit. Thinking exercise and being as
Healthy as realistic me will allow as a first step. You never expect your worst fear to be said back to you by a specialist. Now time to try and deal. Good to have a place to go and vent and learn.
Hello Dalgish_28 and welcome to the forum, you have obviously had a day to remember for not the best of reasons and I expect you and your wife are rather stunned to hear you have Parkinson’s, even if you suspected it it can still be hard to hear the words. Today is not the time to get caught up with all that happens next, there’s time enough for all that. For now just get used to your diagnosis, sort out your most pressing questions and get the scans and all that goes with it sorted out, Believe me that’s enough to be going on with. The early days can be strange, everything can seem different but nothing much has changed, sometimes after diagnosis when it feels like a lot should be happening it can be a bit of an anticlimax when nothing seems to happen - things can take a while to settle - and your emotions can run riot. So give yourself time, go slow and steady and get on with living your life. We have all been there and lived to tell the tale. I’m not going to insult your intelligence by saying it’s a bed of roses but neither is it the black hole it might seem to you and your wife tonight. Many of the forum members are many years post diagnosis and still live good and productive lives, there’s no reason why it shouldn’t be the same for you.
I wish you and your wife well. The forum is always here as and when you need for both of you.
Tot
Really appreciated and so good to know this is here
Thank you. Going to take the weekend off before facing into the work mates I shared my news with via a voice recording on WhatsApp. Feels better to have let people know and support has been great.
My pleasure and for what it’s worth I too decided early on to be open about my diagnosis which is not everyone’s way but was right for me. There seemed no point in not saying because people will notice little things and wonder anyway. Just be prepared you may find people keep looking at you to make sure you can manage or you may have to politely but firmly turn down offers of help you don’t need that sort of thing but they will quite quickly follow your lead and it will become old news. I made it plain I would ask for help if needed and if anybody wanted to ask me anything they could and everyone family, friends work colleagues all took their cue from me. It can be tiring at the beginning but all the support was well intentioned they just needed to learn to sit on their hands a bit. Keep in touch and let us know how you are getting on.
Have a good weekend off!
Tot
Hi
I am new to the forum. My Dad has PD. He was diagnosed maybe 5 years ago. He is 80 and my Mum is 80. Over the last year he has declined with his mobility and has had choking episodes.
He is very stubborn and won’t use the walking aid. I just feel so helpless and try and be stong and positve for them both. I am just wanting advice and people to talk to who are in the same situation. He keeps having falls because hos meds have caused low blood pressure. I just feel so helpless and useless.
Watching a loved one’s health deteriorate is tough and can evoke a range of emotions - I’m truly sorry that your family is currently going through this. We’re here to support all people affected by parkinson’s throughout each stage of the condition and we have a lot of information and support for family members on how to care for someone with Parkinson’s. You can find this information here.
We also have an incredible team of advisers via our free and confidential helpline that have a wealth of knowledge on the condition and can point you in the right direction of more resources to help you and your dad. Please feel free to give us a call on 0808 800 0303.
Lastly, this is a warm and welcoming community and so I’m certain you’ll hear from other members at some point with words of encouragement.
that I should join a choir as soon as I ummm sang a note I would probably be shown the door. Like you say take a leaf from monty pythons always look 
on the bright side of life.
