As per the title, I was diagnosed with PD yesterday. My GP seemed to think there was nothing wrong with me, but I knew there was something going on, so went private.
I’m a 70 year old male and I’m struggling to come to terms with this. I appreciate it’s early days and I know I’ll adapt over time, but it’s getting to that point. I don’t have a partner to share this with and I don’t think my son (who lives with me since the end of his relationship) really knows what to do with me.
Apparently once the consultant’s letter reaches the GP, I can make an appointment to get some drugs. He did tell me what they are, but after he told me the diagnosis, I don’t remember too much after that.
Reading some of the posts on here have been somewhat encouraging, as it seems I’m not going to disintegrate imminently.
My symptoms are a right arm tremor and a ‘ploddy’ right foot. I did have a speech issue last summer, but that has 90% resolved itself. I told the GP about that too, and after some blood tests, he sent me a text saying my cholesterol was good. He did nothing else, so I contacted the stroke clinic (previous history) at the hospital and they arranged an MRI which was clear.
I apparently had a stroke in '19 but I think it was the start of PD. There’s no sign of a stroke on my MRI scans and I never had any inkling that I had it. My symptoms at the time were a balance issue on my right leg and a small dexterity issue with my right hand, and I didn’t swing my right arm when walking.
Hi and a warm welcome to our forum @Chris_H. We have a very friendly and supportive group here and I’m sure they will be along to say hello very soon.
Getting a diagnosis is certainly a shock for most people and right now it’s very new you don’t know what to do with it. It’s not at all surprising that you’re struggling a bit. Who wouldn’t be? The good thing is that you now know what’s going on and will soon have a treatment plan. It’s not uncommon for people to not remember much about what the doctor has told them and sometimes for that reason they take someone along with them.
If he’s willing, your son could benefit from reading about caring for someone with Parkinson’s here: Caring for someone with Parkinson's | Parkinson's UK. The information and support tab on our website is very informative for someone like you that’s just been diagnosed.
I’m sure the members here will be very helpful with filling you in on what you might expect and our website is a wealth of information for you to explore. Finally, our Helpline advisers are there to ask questions and talk about your concerns on 0808 800 0303.
Hi Chris, earlier at 57 but newbie like you and was shocked as you are. I took couple days off work to go to support group and first outpatient appointment and picking up meds today. Hard to adjust I know but we will and struck by how lucky we are not to be in our 20’s, personally having a health wise trouble free life no glasses till mid 40’s. This is the relativity of life living in a wealthy country but it still sucks. All the best to you and take it easy, Mark
Hello Chris_H and welcome to the forum. I can tell you with absolute certainty that the one thing you are not going to do is disintegrate imminently. In fact although it feels like something big should happen after receiving a life changing diagnosis like Parkinson’s, you will probably find that life isn’t much different to how it was before your diagnosis in many ways. For most it is a slow moving condition so you have time to adjust and adapt and once you get your meds sorted - which can be tricky and a bit trial and error to find what suits you - you may carry on with no significant change for some time. JaniceP was spot on in her reply in my opinion, many don’t know what to do with their diagnosis and can feel all at sea. The best way to think of it I believe, is just to go with it for now. Whatever you think and feel - and your emotions may well run riot - is perfectly legitimate. It is all part and parcel of the process of adapting to the diagnosis and finding the way that suits you so that even though Parkinson’s is always going to be there, you can still have a good quality of life and a life of worth. It won’t be the life you saw for yourself but you still have a life it’s just following a different path. That will come with time. For now, just take each day as it comes and try to concentrate on what you need to know now to safely navigate this strange period following diagnosis. Things do settle down, we’ve all been there in one way or a other and lived to tell the tale - so will you.
Just a couple of quick points that are perhaps worth bearing in mind. You wrote you feel like your son doesn’t know what to do with you and you’re probably right. Just as you are struggling to come to terms with your diagnosis, so will he be. It’s a condition that affects family, friends and other people you know to some degree or another. It is not a well understood condition and until it comes knocking on your door most will know little if anything about the condition. Even if they do know a bit, chances are they don’t know what a complex condition it is nor that it is very individual ie people with similar symptoms may present very differently in how they impact on their lives. I think all you can do is just try to keep the lines of communication open and take it from there for now. I also note that you say you haven’t a partner to share the load and it may be your son is not able to help you at the moment. Well the forum is here 24/7 if you need a rant, share when you are feeling a bit down or maybe sharing something good - whatever it is you are not on your own and you can trust what is said because someone will invariably be able to relate to whatever you write; so please do make use of this as you need.
You will be ok but for now if you take one day at a time and just go with whatever that day brings, you’ll be doing alright.
Take care.
Tot
Thanks Tot for that thoughtful and helpful reply.
At the moment, three days in, I feel helpless and hopeless. Because I’m so stressed my tremor has magnified and I’ve been going off like a jack hammer.
I can’t concentrate on anything and I can’t eat.
I made myself dinner last night but 75% went in the bin.
I’m sure I’ll get used to it, it’s just the getting to that point.
Thanks again for taking the time and trouble with your reply.
Hi Chris. Welcome to the forum. I too was completely overwhelmed by the diagnosis and how I feared the future might develop. I found Parkinson’s UK very helpful but had to be careful about the amount of information on hand. It was almost too much when I was first diagnosed in 2019. May I take this opportunity of apologising for the general lack of knowledge amongst G.P.s ( I was one for 30 years) I guess there are so many competing areas that we tend to overlook how such a condition can affect people. I have found the podcast “Movers and Shakers” helpful and I joined our local research interest group which has given a sense of control again as well as information about new developments. Keep optimistic if you can and don’t forget there are thousands of us around!
Thanks Pete. I must admit I was disappointed in the response from my GP. I’ve known him thirty years and he’s always been very good.
I’ll try the podcast. I have heard of it before, but pre diagnosis. Little did I know that it would be so relevant later down the line. I remember thinking it was a clever title.
I had a slightly better day yesterday but have woken up feeling very low today.
Unfortunately depression and undue anxiety seem to be among the multitude of different symptoms that can occur.It could just be that it’s part of your early adjustment to the diagnosis (I know mine was) but please feel free to let me know how things are going. There is plenty of help available. It’s just a question of getting on the right pathway.
Doc Pete is right in what he says Chris_H, most GPs are not well informed about Parkinson’s but then they are general practitioners and not specialist and probably don’t have that many people with Parkinson’s on their books. Even if they do, chances are they don’t see them that often. People do assume that I see my GP very frequently but in actual fact I could probably count on the fingers of one hand how often I’ve seen him in the last several years as my general health is good. I would also say, as I myself know, there is a subtle difference between knowing about Parkinson’s and actually having it. It’s a fine line and gives a unique opportunity to see both sides which no professional can do however knowledgeable they are.
He is also right when he said anxiety and depression seem to be among the multitude of symptoms that can occur, it is a hugely complex condition which is what makes it so difficult to address the concerns and fears of the newly diagnosed in particular.
That your emotions are all over the place at the moment is very common and is just part of the adjustment period. Unfortunately I can’t say how long it will take to come through this period and come out the other side - that’s a how long is a piece of string sort of question - but you will be ok and find a way, your way, to live with Parkinson’s at your elbow. As I said in my previous post all of us on the forum have been where you are now and survived - you will too. At the moment it feels like you are currently on constantly shifting sands, that nothing makes sense any more and you probably can’t imagine a time when life will ever seem anything like normal again. It will happen but for now just go with it. You’ve only had your diagnosis a couple of days, that’s not even a millisecond in Parkinson’s terms and it takes time to find your feet so don’t be so hard on yourself that you don’t seem able to get to grips with it all straightaway. Take it one day at a time and you will slowly but surely begin to notice that it’s not all bad, when you will suddenly notice that you’ve just had an hour when you’re not thinking Parkinson’s and enjoyed a television programme or sat outside in the garden with a cuppa just enjoying the sun - they may be small, incidental things but mostly definitely progress.
Tot
I have started telling more people today. Up to now I’d only told my son and dog walking companion. I’ve now told my two sisters.
Strangely, I’m embarrassed by it and I’ve seen others say the same in other posts. I guess subconsciously I see it as a sign of weakness. Objectively I know that not to be true.
I’ve got off my bum and done some washing and vacuuming this morning, trying to shake myself out of it.
Thanks for the dialogue Pete. Much appreciated.
Telling people is really important to me to normally met with a reply of many more health issues than i have which is very pleasing certainly helps put it in perspective not to say it’s not serious for what we all hope is an enjoyable life given our relative wealth and prosperity. Thank you everyone for this site a real help not feeling alone
My name is Dave and I’m 71 August and I was diagnosed last June. I am only one year on going tomorrow to see the neurologist Dr at the hospital. It has been a hard year not being able to get any help from the neurologist or my practice Dr, the only one besides my family is this website Parkinson uk. It has helped my to get information about what to expect how to deal with and what to lookout for. It’s not easy as I was a very active person had good health over the years. Was looking forward to retirement even though my wife had a stroke 5 years ago. I was her carer
Hi Chris
Sorry I sent my reply before I’d finished it.
Going back as the Parkinson is taking over very fast all I needed was a little help just like you. After failing to get any help a was told about Parkinson uk website.after finding it I was amazed how many people suffer w
Sorry Chris finding it hard to type due to my shaking tonight.I will try again tomorrow.
Keep looking forward there is help out there you are not alone
Hi Dave, I’m 70, so a similar age. I’m lucky that I retired in 2007, so at least got to enjoy 16 years before PD.
I’m just embarking on my first year with PD. I just picked up my first meds.
It’s not been a happy time up to now, so I’m hoping things improve with the meds.
Just back from the hospital to see the neurologist Dr last time I saw her was last July when she diagnosed my Parkinson. Like you i new nothing about Parkinson and what to expect. Over the past 10 months I have been in limbo not knowing if I was doing or not doing the right or wrong think. After see the Dr today I have a much clearer out look on what is happening and what I may expect might happen in the future.
She agreed it was a longtime from my diagnosis but she is very busy and did apologise but could not say if it my be the same next time. She has altered and given me more tables to help with my disturb night sleeping and help my from lashing out in bed also some of the weird dreams I have.
All together it’s been a good to better day to day let’s hope it continues as we march along with this frustrating illness Dam Parkinson. She also highly recommends the Parkinson’s UK website. Hope you get your head around what is happening to you me and many my poor soles out there.
Good look keep your head up and never be afraid to ask on line for just help or even advice.
Thanks Dave. I’m glad to hear you got a few things sorted out.
When I went to the doctor pre diagnosis (3 weeks ago), he said I was fine. He said he’d refer me in case he’d missed something but there a years wait. So I contacted the neurologist who saw me when I allegedly had a stroke, and paid for an assessment. It was a big shock and I’ve resorted to anti depressants for the first time in my life.
They haven’t kicked in yet but at least I know that’s imminent.
As you say, I’m trying to keep my head up, but as I’m sure you know, that’s not always easy.
certainly helps put it in perspective not to say it’s not serious for what we all hope is an enjoyable life given our relative wealth and prosperity. Thank you everyone for this site a real help not feeling alone
