Diagnosed on Friday and I’m so angry I could scream. Interested to hear how people felt and coped after diagnosis. It didn’t come as a massive shock if I’m honest and I thought I’d feel relieved having an explanation for everything that’s been going on. But I don’t. I just feel sad, angry and cheated. I’m 51 and at a time of my life where I was looking forward to doing things with my husband and I feel like I’ve been cheated out of time.
Sorry for rambling but my head is all over the place.
Hi Vicki, firstly no apologies, here is a safe place to ramble. Go ahead scream, I did and cry and then cry some more and think why me?? Trust me it takes a while to absorb this new information and well what if’s, but that is what they are. None of us know how this is going to impact on our daily routines, our futures and for me acceptance took me a while, the best of a year tbh and found the first steps programme on here very valuable. From experience, I would say focus on the here and now, what you can do not what you can’t, don’t worry about the what if’s they may never happen and hopefully with a supportive neuro, PD nurse and if necessary meds you will continue as you are for many years to come. I’m similar age and then had the menoapuse thrown into the mix. I have had my share of not so good days like everyone else but staying a glass half full and not giving into the worry, try not to overwhelm yourself with too many fact finding exercises, I’d suggest keep a journal/diary, write as it comes, emotions, mood, diet, sleep patterns, if you are starting meds any side effects, it will be valuable info when you next see your neuro consultant. Feel free to post and ask anything, there is a really supportive group on here, take care
People react in all sorts of ways to a diagnosis of Parkinson’s. There is no right or wrong way, just the unique way you feel about it yourself and although you may have known in your heart of hearts that it was Parkinson’s, it doesn’t necessarily make it any less of a shock when you are actually given the news.
For many it’s simply that they know nothing about Parkinson’s and are just plain scared. For others like yourself it is a reaction to knowing at least enough to know it’s life changing but see it as a loss of the life you envisaged for yourself; your hopes, dream and plans are dashed and what will be in it’s place? Probably just a slippery slope downwards. Others will go into denial and expend a lot of energy trying to believe nothing is wrong. Others will take the diagnosis then madly try to read everything they can lay their hands on and often end up in a bit of a state because what they tend to remember is the worst bits of all they have read.
I’m not going to pretend having Parkinson’s is a bundle of laughs, it’s not. It can be challenging and frustrating in equal, measure and there will be times when you’d like to stop the world and get off. Neither however is it all a one way street downwards which it probably feels like at the moment.
For many progression of the condition is slow and gradual and gives you time to adapt and adjust. There is certainly no need to give up on your plans, hopes and dreams. Perhaps in time you may need to do those things a little differently but you’ll be amazed at the creativity of many people with Parkinson’s enabling them to continue to live life to the full.
What you are feeling now is akin to a bereavement for a life that has been taken away. You will however find your own way to live with old Parkie and that way will be the right way for you. I don’t really expect you to believe that right now, and I can’t tell you how long that will take because the timeline is yours, but it will happen.
All you have to do at the moment is work through your feelings whatever they are and however long it takes. At some point you will start learning to live with old Parkie and come to understand that though you can’t wish him away there is plenty you can do to meet any challenges he throws at you if you so choose. Personally I never give him star billing - I am always Tot first and I happen to have Parkinson’s. At Christmas it will be 13 years since my own diagnosis and am doing ok and enjoying life. I don’t like having Parkinson’s and if there was a way of getting rid I most certainly would. For now however it is part of my life and therefore part of me; it is still however my life and I plan to give myself the best life I can even with the ever present Parkinson’s. You too will find a way to live with Parkinson’s and give yourself a life of quality and meaning if that’s what you want.
Hi Vickt very good advice what Tot has said, yes we all get angry and say ““WHY ME”” then I think to myself, OK I have Parki but then I must admit feel slightly privilege and put myself on the stand with all those famous actors/people who also have the condition. It has now been 12 years since I was first told that i had PD I had been looking after my mum for 10 years before that as she had dementia, but my hubby and I still liked travel and had seen quite a few places. Well after mum had gone and I found out that i had PD, we took the bull by the horns and sat down for a family chat. Yes we had a house which was paid for, car also paid for both now near retirement, what did we want to do? So we moved into an housing assosation bungalow sold the house, gave the kids some money grandchildren invested there money. Then what we had left was ours, been around the world twice, travelled to places we never would have been to if we had not sold up. You can not take it with you so, they say. I am not saying this is what we all should do but it;s what we choose to do, My 2 boys gave us lots of encouragement. To quote FS we did it our way. Now my Parki is starting to tell me what to do but I will still put up a fight it won’t take over just yet as there are still places I wish to see. PS Parkie will not take over but holiday insurance might,
Hi @Vicki1008, As @AnaElsa mentioned about Parkinson’s Nurse, you can find out your nearest one through your GP Surgery, these are a good person to have in your corner should you need help at anytime. Thinking on the positive, you don’t need to change your lifestyle because of the diagnosis, just get on with your life as it is. As some of the responders have said, you will know when it is time to adapt but hopefully it won’t be for a long time and you can do what you normally do. Treat it as a minor bump in the road of life, do the things with your husband that you’re looking forward to doing. Don’t let the diagnosis rule your life. @Tot has a saying, you have Parkinson’s, it doesn’t have you, bear this in mind and you will rise above it. In the meantime you’ve got a lot of people on here who are your friends in the ether and will come to your aid as and when you need it. We’re all in the same boat but everyone is different.
Hi @Vicki1008 lots of great responses already. I was diagnosed in 2019 at 49. I was relieved to have an explanation for all the strange symptoms. And I was strangely pleased that my self-diagnosis some months previous proved correct. I had very mild symptoms, still do compared to a lot of people.
Get yourself on First Steps, I got quite a lot out of it.
Remember that there are people who have had Parkinson’s for decades and still lead relatively normal lives. Parkinson’s is a part of me. But I am also a father, a web developer, a cyclist, a choir singer…Parkinson’s doesn’t stop my life happening - and I am sure, once you are over this initial shock, you won’t let it stop your life happening either.
I think you have to go with your feelings whatever they are, but don’t be too angry, you will start to feel better once you’ve got your head around it. I’m 53 and have been diagnosed for 18 years and still going strong. Chin up lm sure you can tackle it,
Hi Vicki1008, sorry if I sound a bit off, but you haven’t really been cheated out of anything. All I did when I was diagnosed with Parkinson’s 2 years ago was to look at life in a different way. I’ve had to adapt how I do things. Can’t cook as well as I used to, have to use other methods to help me in the kitchen. But I get the job done.
I’ve just spent the last weekend down at The Lizard in Cornwall with my wife, daughter and grandchildren. If you know anything about the coastal paths in Cornwall, they an not for the faint hearted. With a little thought we managed them.
I understand you are angry, but the way I looked at my diagnosis was I’ve got it, it isn’t going to go away. Learn to live with it and move on. By the way I’m 65, I have 245 days till I retire. I’m ticking those days off one by one and unless I get hit by a bus, in 245 days time look out world, here I come.
In the front of my diary I’ve written in big bold letters PMA, positive mental attitude. Hope this helps you Vicki1008.
I absolutely love reading all your stories. You are all so positive and showing you can still live a normal life with PD. Having a newly diagnosed husband at 53 your stories really do make me realise we can live with it.
Thank you all for being so positive.
It is a huge shock, even if expected. I was diag osed with young onset parkinsons over 15 years ago. Mostly life has remained good. Its only now at 66 i find that i suffer from fatigue but i press on and stay positive.
The pandemic hasnt helped any of us, especially those of us who are now alone ( but i actually enjoyed my lockdown and did lots of OU courses and new hobbies )
Life is definitely not over , eventually it will become different but not worse.
Stay positive xx
I have had PD since 2010 as I read though all your comments its nice to read about your Positive ways and thinking, you all give so much encourgement to the rest of us. It’s still amazing though that PD is not always seen as an illness and JO Public don’t know much about (much the same as we do ) but when any one ask me what is PD like I give them the leaflet an Intro into PD. and after reading it are amazed then some times I can answer their questions.
ps the leaflets are free from Parkinson’s UK,
There is little we can do to make this awful condition go away. However we have our minds and we can control how we deal with it, how we LIVE WITH it
Hard task, but i for one am fighting all the way
Indeed, quite right.
I have been looking at a new rehab clinic for PD.
It opened in January 2022 on the German offshore island of Heligoland, a small archipelago in the North Sea.
Apparently the maritime climate is also very good for PD.
Heligoland was British from 1807 - 1890, you may want to go!
Are there any similar rehab centres in the UK?
Indeed, the stories are lovely!
My friend may have PD plus / the atypical Parkinsons does not react to the typical PD medication and it progesses faster, much faster apparently.
My friend is now in such a state that I suggested a bucket list.
That is something positive to focus on, rather than thinking when it is time for the nursing home.
Best wishes Mx
I was diagnosed in 2020. Although I suspected I had it, it did take a while to get used to it. Yes, the pandemic didn’t help. I sort of kept myself to myself. Didn’t bother or feel like doing anything. Then it hit me. If I had a broken leg there’s nothing I can do about it, just wait for it to heal. I know there isn’t a cure for PD but the point I’m trying to make is I’ve got it. It isn’t going to control me or my family. There are going to be some restriction, deal with them and move on. One thing I’ve done in moving on is to join two local singing groups. It’s given me motivation to get out there and do something. I’m not the best singer but the great thing about it is who cares. We are all having a great time for a couple of hours a week. I’m even finding I’m just doing something in the house and singing to myself.
I’m not saying everyone should join a singing group, but find something you like doing or would like to try and go for it. PD limits what you can do, it doesn’t stop you from living your life. You can do it.
I was diagnosed in 2019 but I had no symptoms (or at least none that I was aware of). I went to see the neuro for another, apparently idiopathic, problem (i.e he didn’t know what it was) and was told words to the effect “by the way, you have PD” then left to find out what that means on my own. Being physically fine I don’t feel able to go to the meetings and support groups, I would feel a fraud, so I’m coping on my own. I’m only just now on drugs (for rbd sleep) and physically I am ok but it was a major shock mentally. I’d love to meet up with others at my stage, so I look forward (if that is the right phrase) to when it has developed and I feel comfortable to go to the regular PD groups.
Hi NeilT, I’m glad you have found the forum, how concerning that you were told of your diagnoisis in this way. I see your were diagnosed in 2019 and only just starting meds? Managing through the lockdown has impacted on the support that is available unfortuanately, but hoping that we are coming out the other side and appointments will become available with the time to talk with consultants of PD nurse. I get up most morning and feel as you say phsically fine, my mum came with me to my first meeting and welcomed by the group, they thought it was my mum that has PD and I was along to support her. It made us both laugh and if I could emphasise here it’s worth thinking about, as you say it was a major schock for you mentally the emotional support is there at the group too. If you find a local support group you could always pop your head around the door to see what’s going on, if you aren’t up for sharing with others as you say physically fine you may be able to help with setting up, with chairs etc, I’, sure they will always accept help from willing and able volunteers! Have you looked at the first steps programme if you are not up to visiting a group? I did this programme and tbh I was diagnosed in August 2020 but realised not until May 2021 when I came to terms with this emotionally. Here is the link First Steps programme | Parkinson's UK
At least as you have no found the forum, I hope you will find some support as you don’t have to cope alone, looking after your emotional needs are as important as looking after yourself physically. Take care
Hi NeilT, apologies for spelling! Fingers mis key! oops
Spelling is much overrated