Feeling lost & alone :(

Hi, I have had quite a torrid couple of years, with bladder, bowel, Gastro problems then more recently spasms and tremors. Anxiety and depression have also got worse. I never even suspected any form of neuro disorder so after seeing neurologist last week was shocked to hear that he suspects aytypical Parkinsons. Reading things in black and white has floored me although cannot fault the consultant, spent so much time testing everything ( half of which didn’t know I even had a problem with!) I used to be a fit 54 year old now just about manage to get through my work day! :(. Just waiting for the Dat Scan now! Thanks for reading .

Hello Busyizzy54, I’ve just seen your post of 2 hours ago and am glad you found the forum because here you need never feel alone. I will come back later when my typing wakes up a bit, but I just wanted you to know that and to know they are not glib words but the truth. Members of the forum understand and do care. Now all we have to do is help you find a way to not feel so lost. Be assured we have quite a good record on that too as I hope you will find. Speak later.



I’m so sorry you’ve been having such a horrible time. Believe me when I say that you are not alone. We’ve all been through that diagnosis shock - Parkinson’s is something that happens to other people so it will take you time to get your head round it, but you will, and then you’ll realise that even though your life has changed, you still have a life.

There are some very knowledgeable and helpful people here so ask anything you like, and don’t forget about the helpline.

Also, if you’re having a bad day don’t be afraid to ‘vent’. Nobody will judge you for it.

Wishing you well,


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Hello Busyizzy54
To pick up on my brief message this morning, sadly you are not alone in having a ‘torrid time’ in the period leading up to formal diagnosis and some wait a long time. It is due in part to there not being a diagnostic test per se for Parkinson’s and many of the symptoms could be applied to other neurological conditions - and what you definitely don’t need is to be misdiagnosed. It is not uncommon either that you did not think of a neurological cause. Why would you with everything that you had going on and overlaid with anxiety and depression which can and does make even the simplest decisions and thought processes so much more difficult.

I note that your consultant suspects you have atypical Parkinson’s so I am assuming it is not yet your formal diagnosis but is the most likely outcome. I don’t know over much about atypical Parkinson’s, I know it differs from the common idiopathic Parkinson’s, which is what I have but I think what I and others tell people newly diagnosed will still hold true for you. In a nutshell - that in all probability you will run through every conceivable emotion, and that’s alright. They will all be a legitimate response to events. Give yourself time to get used to the diagnosis but try to avoid reading absolutely everything you can find because this can lead to information overload and can make you feel that your only future is some black hole with no escape, which is not very helpful to say the least. Concentrate on what you want and need to know now and start with that. You may find it helpful to ring the helpline and actually talk to someone, that in itself often helps. Write down any questions you may have for your next appointment to make sure you don’t forget anything,it can also help to note any changes in your physical or mental health since your last meeting.

Living with Parkinson’s is life changing, it can be challenging and frustrating and accepting that is not easy; equally though it is not the end of the world unless you choose it to be so. You may need to do things a bit differently but then ‘variety is the spice of life’ isn’t that what they say?

What Jgo has written is so true. You can live a life that’s worth it and live with Parkinson’s too you just have to work out the best way for you and that takes time and patience. You may have to take that on blind trust for now but we’ve all been there and come through it, you will too. The next few weeks and months will be a learning curve whilst the best options for you are agreed but things will settle, you are still you and you most certainly will still have a life worth living if you are able to accept Parkinson’s will be part of that life - that’s part of your life not your whole life.
I do hope this has helped a little.
Let us know how you are getting on and be kind to yourself too.


Thank you so much being in no mans land is what makes it harder. I saw my physio today and she said she wasn’t surprised & it explains so many of my symptoms but also said biggest thing I can do is keep active and positive.
I cannot change my symptoms but at least I can start to understand them. Having someone to listen is also going to be vitally important so thank you.

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Had my DatScan in Wednesday just waiting for consultant to ring with results Rather have an appt date least I would know! Trying to remain positive but getting harder.

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Sorry things are tough.

I’m waiting for the result of a scan too. The vagueness of how and when I’ll find out anything is really hard. It might be two weeks (they said), or longer (they said), and if I don’t hear then there’s probably nothing to report. Unless there is.

I’d rather have an appointment date too.


Hello Busyizzy54 and lemon
I feel for you both it’s awful waiting for results and until they come through I doubt it will be far from your thoughts. I don’t have any magic solutions, I wish I did, but hope neither of you have to wait long and that I and other forum members will do our best to prop you up and keep you going while you wait if that’s what you need.
Take care


hi Busyizzy54 and lemon

I have just had my diagnosis this week after having an awful 3 months since I first saw the neurologist. I desperately needed to know what was wrong with me and was struggling physically so much (and up to the first onset of symptoms was running marathons and doing triathlons reIgularly). It is a tough time. For me the not knowing was worse than getting the diagnosis. I imagine everyone here has been through a similarly tough time.

I started medication on Tuesday and am already feeling more capable physically and mentally much better. I am starting to realise just how bad things had got and how many things physically and mentally had changed due to Parkinson’s that I hadn’t even noticed.

My only advice during this period is to take one day at a time, be kind to yourself and try to do something nice for yourself each day, even if it is just a quiet 5 minutes to really savour a coffee


Thank you it’s just the not knowing isn’t it. I know I’m not right and what the consultant suspects, physically I am stronger than have been in a while but mentally dealing with this just pulls me down that little bit more.

Thanks for the support really appreciate it. Xx


I think that often it is managing your brain that tends to go into overdrive in situations like yours, that is the hardest part. The brain is a powerful thing with a powerful voice that is difficult to ignore; when the going gets tough it is usually the negative side that shouts loudest.
I’m not sure this will help since you are waiting for formal diagnosis but one of the non motor symptoms I live with now is that I can get stressed and anxious easily. I put that fairly and squarely on what I’ve come to call my Parkinson brain. Parkinson’s brain is different from me and how I would have reacted pre diagnosis and in separating it out I find my ‘me brain voice’ is stronger and helps me keep a more balanced perspective. It’s another technique I’ve developed for myself to keep Parkinson’s in its place and this feeds back into feeling good about positivity because in essence, I retain the upper hand. I hesitated to write this because it is difficult to explain and may not make sense but maybe it will help you look a bit creatively about what the real issue is and find a way to minimise the effect of that negative voice. If nothing else my post may give you something to occupy your mind whilst you wait for your results and that in itself may help the mental challenge you are facing.


Hi Busyizzy,

I’m in the same boat as you. I’m just turned 40. Was 39 when this process began

I had very similar symptoms as you with bladder and Gastro problems and it was the more recent Spasms, tremors and feeling unsteady on my feet that pushed me to go to the doctors. Also having the same with anxiety and depression.

Obviously I’m in no way a medical expert. But have you had covid19?? Reason I asked, is because my neurologist said they were getting a lot of people with the same symptoms as me, who had previously had Covid. In fact that day, I was the 6th patient and 4 before me had exactly the same symptoms. I caught covid at the Cheltenham Festival in early march 2020. So really early. I’m not even sure there had been any covid deaths at that point.

Anyway, the neurologist said that the only reason I was being sent for a datscan was because I had additional symptoms, namely my arm had no swing when walking. Reading back through my letter there was also an abnormality with my liver result which can be an indicator of YOPD. There was another additional symptom that pushed her to the datscan, but cant find mention to it in the report.

I had my Datscan on August 11th. I phoned the neurologists secretary on the 17th and they said it was currently taking 3 weeks from the scan, till getting a letter or phonecall with results.

I think the worrying is really affecting me. The last week i have been struggling at work, and Very forgetful. I left house open with keys in door and door wide open all day last week. Also forgot I cooked something for a couple of hours. Then left keys in car ignition all weekend.

Mentally I felt like it was getting worse quickly. Struggling with words. making words up that are a combination of two words. Forgetting kids names. But now I’m thinking with last weeks three messups, that maybe the mental symptoms are seeming worse because im stressed.

I hope you get your result soon, and feel free to ask any questions or seek advice. Some very helpful people here.

The not knowing is so hard


The consultant rang me today. The Datscan has come back normal which takes me back to the beginning! :(.

He asked me if I had a brain scan… I said yes you showed it to me the last time I saw you.

After asking me to outline the symptoms I was having it was obvious he didn’t have my notes so the conversation just ended with well I need to see you again! That was it.
Symptoms haven’t disappeared so do I just wait for a follow up or go for a second opinion?
Feeling very frustrated.

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@WORRIED81 I know I had my results day but none the wiser! :(. Feeling very flat!
Haven’t had Covid but had number of chest issues and lately coughing when I eat.

I can’t get words out and just stop mid sentence too!
Waiting all begins again:(

Honestly they do make me cross sometimes leaving you hanging like that not knowing what to do next is, in my opinion, unforgiveable. Sometimes I think because this is their normal bread and butter business over time they lose sight of the fact that it is all new and very worrying for you and be a bit empathetic. Rant over. What I suggest you do is contact his secretary first thing tomorrow and tell her you need to know what happens next because you’ve been left not knowing what to do and it is causing you to become increasingly stressed and would she bring this to his attention and get back to you by the end of the day. Make sure she knows how upset, frustrated and angry you are. If that gets you nowhere do it again tomorrow but if nothing is forthcoming after that you maybe should consider changing your consultant or seeking a second opinion.
I certainly wouldn’t wait at the very least you are entitled to know what his thinking is and timescales. It is simply not good enough and we hear of this sort of thing time and again. This is the sort of time which my friend describes as needing you to shoot from the hip ie say exactly how you are feeling and its impact on you. I myself started to write a diplomatic response to a reply I received following a complaint (long story and the detail doesn’t matter) then I thought no, it’s not alright now as the reply implied and I started again polite but very direct. It brought very quick results. Not a choice for all occasions but I think it is the right thing to do here. Good luck let us know how you get on.

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Thank you so much @Tot , I just feel in no mans land trying to cope with the symptoms which funnily enough just haven’t disappeared with the result, and just have to wait again… I thought I should wait 24 hours before writing as a was a bit of an emotional mess earlier not not truly responsible for the words I might write!

That’s fair enough or maybe now is the time to ask someone you trust to help you. Just a thought to consider

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I have now been given a follow up appt end of October, my tremors are just not easing and if anything worse, would it be worth contacting GP in the interim.

Hello Busyizzy54 your tremors could be worsening because you are stressed. Stress and Parkinson’s definitely do not go together.
How did you get your follow-up appointment - phone call, letter? Depending on how you heard about the appt you could try going back to the consultant to see if you can get an earlier one or maybe a cancellation. You could try your GP but it may not get you very far as they are what their title says general not expert.
I think your best bet would be to try and bring the stress levels down. Have a look on YouTube there are lots of videos. You might also be interested in laughter therapy again there’s lots on YouTube but this explains it a bit.
Laughter Therapy: What is it and how is it beneficial?
Please let me know how you are getting on.

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PS forgot to say the Parkinson’s UK site also has info on stress etc and it may be worth your taking a look at that too

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