Attitude and frustration

Hi I am new to the forum so hello everyone. I was diagnosed with PD in 2013 by a very well experienced professor of neurological disease, he ws wonderful and a french professo as I lived in France then. Since then I have moved countries and seen several consultants and because I don’t fit their exact symptoms I have been told I am stage 2/3 from 1 so called expert, and I haven’t got PD from another and all tablets removed…I was really ill post this, and from another it may be something else they don’t know what and quite frankly as I do not present all symptoms they don’t really care. Moving on has anyone had bouts of …the best I can describe it…I could scream I really have to control my temper (never known for my temper, more logical reasoning) and I feel like I could just throw something…I have never suffered with this in my life before. I am on the usual drugs Dopamine Azilect but I just feel as though I need to calm down and doing my best to take control.

Hi @Chrissy13

Welcome to the forum. Our helpline is always here to help you on 0808 800 0303 - they are open Monday - Friday 9 am to 7 pm, Saturday 10 am to 2 pm (closed sunday and bank holidays). Or you can email us on [email protected]. They can put you in touch with a local adviser and/or a specialist nurse if this is appropriate.

Kind regards

Sue - Moderation Team

Hi. Welcome to the forum. I’ve certainly had an uncontrollable temper in the past, but always in reaction to events and the last time was many years ago, years before I was diagnosed with PD.

It sounds to me like you need to do some meditation or relaxation exercises, or get rid of stress by exercising.

Hello Chrissy13, I am not surprised you feel as you do by the time I had reached the end of your post I was confused and pretty sure in your shoes would feel much the same. From what I have read over the years there is a lot variation in the quality of service people receive not least because much seems to depend on how consultants view Parkinson’s; for example seeing it as a physical condition and playing little heed to the myriad of non motor symptoms that cause such difficulty for so many. As you have found, too often there is not even agreement over the actual diagnosis. It is true we have come a long way in understanding and treating Parkinson’s and there is a lot of research going on, but on reading posts like yours it can feel that we are hardly off the starting blocks. I believe I have been fortunate in my own so called Parkinson’s journey having an excellent consultant since my diagnosis and access to a specialist nurse with a newly created post within the first two years. I am not sure I can offer much in the way of what may help you, rightly or wrongly I am left with the feeling that you need to have your confidence restored in your medical team first and that this in turn, may help you develop or manage the anger you are currently experiencing. I think the advice to speak to the help desk is a good one, they may be able to help you see the wood for the trees and hopefully give you a way forward. Although hopeless at doing it myself, I have tried several times but it’s just not me, I can see the benefits in keeping some form of diary where you note not only your symptoms but how you feel at any given point. It can identify a pattern which may for example show you triggers which set off your angry feelings or desire to throw something. Sorry I can’t offer anything more productive except to say you can always release the pressure valve safely here on the forum. I send my best wishes and hope you find someone on the forum who can give you more than I. Good luck.

I can sympathise with you, I’m onto my 3rd consultant, and they’ve all given me a different diagnosis, then they get bored because their prescribed meds’ have no effect, and pass me on to another consultant.

hi I’m a Yank new to this site. the reason I joined was because I saw a line of notes on here from 2013 that dealt with an issue that I’m having one hell of a problem with. Every night, it doesn’t matter what I eat, I get terribly congested. Then I develop a postnasal drip so bad, it’s like someone turned the faucet on in the back of my throat. Then comes the coughing and the choking with the awful sticky gross mucus that never seems to end. This will go on till 1 or 2 AM and then just go away like it was never there. Till the next night , and it starts all over again! The article in 2013 had a number of Parkies who experienced the same thing. is there anyone out there who knows what I’m going through who can shed some light on this?

Hi @Puppy and welcome to the forums,

Sorry to hear about your congestion difficulties and how they affect your sleep, I’m sure other forum members will share their specific experiences of this with you too, however you might want to consider starting this as a new thread in the #about-parkinsons-and-health:symptoms section where it may be seen more easily.
Do also speak to your consultant or Parkinson’s nurse, they should be able to offer you some advice too.

Not sure if you are in the UK or in the States, but our helpline is always here to help you on 0808 800 0303 - they are open Monday - Friday 9 am to 7 pm, Saturday 10 am to 2 pm (closed Sunday and bank holidays). We have specialist nurse advisers on the helpline, orr you can can also email us on [email protected].

There are a number of Parkinson’s organisations in the states who may also be able to offer you support…
The Parkinson’s Foundation

The Michael J Fox Foundation

Warm regards,
Forum Moderation Team

Hello Puppy I have taken the liberty of reposting your post as suggested at #about-parkinsons-and-health:symptoms. Hope you don’t mind but it sounds awful and all I could think to do to help. Hope someone comes up with some suggestions. Take care. Click on the link to see it.

Hi Puppy I have had a similar problem with choking and not being able to swallow I also have a “drippy nose” as I am also an Asthmatic but I have found an extra pillow has helped which allows me to swallow and the “gunk” which was collecting in my throat is eased. This is not a panacea but it does help also I put Lavender on my pillow which helps me to relax and breath easier. Just a thought so give it a try.

1 Like

Have to say Chrissy13 this does sound like a particularly distressing symptom. On the back of your suggestions I was wondering if you have to be choosy about how you lay in bed eg not on your back presumably and also if steaming before you go to bed might not help you clear head/throat a bit before you start and you are at that point ‘empty’ Sorry if that’s a totally silly suggestion but on the basis it might not be… I don’t have this problem but saliva is an issue a cross between pooling (so I do understand the gunk bit albeit different gunk) and dribbling enough to soak you. Choking and not being able to swallow must be awful and not a little bit scary at times I shouldn’t wonder. May I ask if you have had this symptom long? I like the lavender idea too. Take care