Don;t know who to turn to

Hi, I am at my wits end, in pain, confused, lost and scared, I need help, but don’t know where to turn.

I have been watching this forum for a while, since being diagnosed with Parkinson’s just over 3 years ago, but never posted before,

I am on Repinerol (Repenix XL) 12mg, which I split and take the 8mg tablet in the morning and the 4mg in the evening. but t juts does not appear to be working at the moment.

This weekend I lost it, totally, I was supposed to be on a business trip to Australia, but had to turn back in Dubai, I could not finish the trip. I was shaking uncontrollably, 1/2 my face had gone numb, i was in pain, I was drowning in my own sweat and stank to high-heaven (not good in an enclosed metal tube @ 40,000 feet). I just wanted to find a hole, curl up and die

I got back to the UK yesterday. My wife & boss keep suggesting the local walk in centre. whilst I have been there in the past (for me, family and friends) for various things, and think they do a great job, I am not sure they can help me now. I need specialist, PD related help.

I (well my wife) has rang my local PD clinic at the hospital and left a VM, but they will not get it till Mon. I have not seen my Neurologist in almost 18 months to discuss worsening symptoms. they rearranged the booked appointment in June to July, then they cancelled that. I have rang to ask when it will be rescheduled and just been told to wait until it is. So don’t expect anything quick to happen there.

was going to ring the Parkinson’s UK help line today, hence being on this site. But see they are not open today

NHS 111?

Who can I go to to help, i cannot go on like this. i know a message board is not the right place, but i have no-one i can talk to. My wife, family and friends do not understand what PD does to you, and most simply act as if it is not there:: never ask me about it, or talk about it.

Hi Jon,
So sorry to hear that you’ve been having these symptoms and feeling so confused. We would suggest you get medical advice as soon as possible.
If the situation is urgent you can call NHS 111 at any time day or night:
Our helpline service will be open in the morning. Please do not hesitate to call us on 0808 800 0303 to speak to one of our advisers. We are open from Monday-Friday: 9am-7pm and on Saturday: 10am-2pm.

Take care,
Moderation Team

Hi John v

18 months is criminal.
If you have £ have u thought of going private
does ur company have medical insurance

Hello JonB

It sounds as if you need an increase in your meds. You haven’t mentioned a specialist nurse, do you have one? They can often speed up an appointment with the neuro. If you don’t have one then pester your GP to see what they can do. Please don’t put up with it and don’t blame yourself for turning back on the flight. I was supposed to be meeting my daughter once in London. Something was wrong on the tube line I needed to use, daughter had turned off her mobile in a meeting at the end of her working day, I just turned and fled for home. That sort of panic is part of PD
best of luck

Thanks for the response.
I rang 111. Unfortunately there was a huge amount of confusion and I was sent to the wrong place twice. Eventually saw a gp in the out of hours hospital and have been referred to local GPAU clinic, which is where I am sitting now. Gp was bemused by my symptoms, hence his referral cut a battery of tests.

Yes I do have a PD nurse, saw her in Jan, and booked to see her agian next Jan… It is her who we left a message for, but won’t get anything till tomorrow

Private is out I think. My work does have medical, but I only became eligible after been diagnosed with PD, so is classed as pre existing, and not covered. I fear if I go private once I will be removed from my NHS care. I know if others who have experienced similar things, though with other conditions

Thanks again for the responses, hopefully they will figure out if it is me, my meds, some new condition,… I will let you know

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Just seen this.
My first reaction was “Really? In this day and age”.
This lack of understanding of our condition, even by medical people, borders on criminal.
Why do the medical profession think that we can go for months and months without seeing someone qualified to deal with the situations we find ourselves in?
Alone doesn’t even begin to describe the way we feel when an " episode" is taking place.
Desolate, despairing, hopeless, helpless are a few words I’d use.
I had a meltdown last week. Fortunately it was indoors. I could feel it coming on. I was being pressured and hurried. I froze, slumped into a chair. I could barely communicate.
It took this episode to even get my family to notice how fragile my condition is at times.
Don’t blame yourself.
I tell you that yet I do it all the time.
Make a fuss.
I tell you that yet I try so hard not to do it myself.
My thoughts on this parkinsons that we are lumbered with is this.
We have to control it.
Not let it control us.
Easier said than done I know.

Hi and I just wanted to tell you how sorry I am about your troubles just now. It is frustrating for you and I pray that they will soon have you sorted out. My Mum has had PD for over 30 years now and it is only by thumping the table, insisting on the best that they could possibly provide, and letting the PD nurse know that Mum needs to see her every 5 - 6 weeks that we have managed to get a decent amount of assistance, and I can give Mum the kind of care that she needs 24/7. As her carer I also ensure that I keep up to date with new ideas (mostly from this site) and there are also some interesting PD documentaries on YTube … and please keep in touch because there are plenty of help sites available here for you too. Keep positive and strong and hope to hear via the site that they have found a conclusion to your satisfaction…

Hi Jon B

I’m sorry you have been experiencing all these problems. Re private vs nhs care. When I was referred to a neurologist by my gp I worried so much I decided to go down the private healthcare route to speed up the process. I saw a consultant neurologist within 48 hours for £250.00. He diagnosed Parkinsons. After that he suggested that I go back on the NHS for scans and treatment to avoid further personal cost which I have done with no problems.

I hope you can get help for your symptoms asap. I’m feeling much better since starting meds. I have my ups and downs which worry me from time to time. I’m trying to stay positive which is hard sometimes.

How good the forum can be for support. What a horrible time you are having. You describe a meltdown so well. Yes, you need complete review. If your wife can shoulder some of the fight to get something done, without you feeling disempowered, get her to do it. Stress and fighting doesn’t help PD symptoms - no wonder you feel terrible. My hubby retired, not because he couldn’t actually do the job, but because PD-wise, he was much better without the stress of deadlines, appointments, schedules etc. We learned that avoiding stress is a commendable condition-management technique. It is not being a wuss! Get your wife or GP to fight for a review and ask for 6 monthly touch base thereafter to keep on top of the PD. Sending positive thoughts…

Sod’s Law

Unfortunately the Law of Sod states that when we need to be at our best, our worst can creep up on us. Sounds pretty stressful doing a long-haul flight and being expected to perform in a work-related situation afterwards. Mere mortals who don’t have parkinsonian super-powers would not be 100%.

I have thought about doing a long-flight to visit a cousin in Brazil but in reality a short hop to Spain or Scotland is all I have managed.

It is Sod’s law that the night before you travel you will have no sleep aT ALL AND ALL YOUR SYMPTOMS WILL BE WORSE ANd THE FOLLOWING NIGHT YOU WILL BE OVER TIRED and take hours to get to sleep then wake up after a couple of hours…

Old parky is incredibly changeable and sensitive to stress I try not to panic when things get worse and just hope that it is temporary and I’ll feel much better if and when I can get more than a FEW hours sleep in a row.

A few years ago I tried out the Dance for parkinson’s class. It’s not very strenuous but it is very sociable – cake & tea afterwaRDS. However the last couple of times I had the worst ever whole body tremor and could scarcely extend my right arm as it got so stiff. Then they were so kind I ended up in floods of tears which I hate doing in public.

I had Brain overload & probably not enough sleep. Fed up with the hospital denying my parkinson’s and there I was in HUGE ROOM full of PDers and I was the shakiest one there.

Couldn’t get to a place of relaxation with the music. At home with my favourite music I can have a little dance and my muscles will go a bit loose. But in the dance studio I found just piano & flute a bit too stop start & not enough rhythm. Also distracted by trying to keep my false teeth from falling out and and keep my chewing gum in.

Hope things settle down for you.

Hi Jon b
I’ve just stumbled across your post and it frustrates me so I can barely imagine what it’s doing to you.
I must say that I agree with dinky that while it is commendable that you are still working maybe it’s time to review your options .
I’m sure you’re bosses are happy that you are still working as will the government but I truly feel the stress of work and long distance travel is too much for you now.
Please take advice from agencies like CAB and have a think about giving up on work .
I must say don’t resign under any circumstance but do just put in sick notes until you are let go however long that takes in fact the longer it takes the more your employer will have to pay for holiday , bank holiday etc.
Remember your employer is not your friend and has a different agenda from you now.
I understand you may be worried about financial problems but ask yourself what is more important ? Enjoying as best you can the rest of your life or stressing until you drop.
What would your boss do if he/ she was given the same outlook ? There are no pockets in a shroud.
So why should you possibly shorten your life and time with your family to add to someone else’s profit margin.
You have done your bit my friend and it’s time to get out of the ratrace and think about yourself .
Come and join the musketeers on the insomnia thread , what you read on the thread is just the nonsense but our personal messages and texts are the serious side .
All for one and one for all look us up and good luck to you my friend.
Tommy :pill::pill:

very proud of you for being so open. You have to think of yourself now. I have to agree with Tommy, your employers do not really care……. people have dollar signs for eyeballs. It is a rude awakening when you realise that very few people truly understand. Sadly the world is devised for the fit and healthy. Those closest to you need to be educated, refer them to the forum.
I wish you luck and resilience . This thread is supportive in so many ways, people are out there who care.
Lesley T

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Hi Jon
So sorry you are going through all this and not seeing your consultant for 18 months is criminal even though we all know neurologists are in short supply. It suggests to me your local hospital is anything but a centre of excellence and if travelling a little further to be seen in a specialist PD/movement disorders clinic is feasible for you, asking your GP to refer you is something I would strongly recommend. The NHS gives you a right to a second opinion & treatment in a place of your choice. We did that 9 months ago and my husband hasn’t looked back since. For comparison, my husband is not on any medication yet but appointments with his consultant were initially 6-monthly and are now every 4 months.

Although early days down this road for us, I agree with what others have said about the impact stress has on PD. We are both retired now - I was still working but retired 6 months ago to remove that stressor from our joint lives. We’ve learnt to slow down in the sense of not trying to pack too much into our lives; do the things we enjoy or want to do but say no to the rest; and although we have always been pretty active, we now make exercise a main focus of each day. Make space & time for you, and those of your family and friends you really want to(!) - if rethinking work is an option, take it.

Hope things very soon improve soon.

Jon, it seems you have been having a rough time. You are not alone. There is support out ther but unfortunately you have to search it out, support groups, nurses, dance groups, I used go,to one at the UEA sport park. It was brilliant and though we were mostly people with PD, Carers were encouraged to join in. All the ‘exercises’ were designed with us in mind. I only stopped because driving got difficult!

So, I try hard to keep as strong mentally and physically with gentle exercises for both body and mind, mindfulness is brilliant, singing group. Sometimes though even I feel that terrible sense of loss, afraid that I will lose ‘me’ but I quite like the new me. There are days when I neither want to do anything nor wish to, learn to be accepting of the person you are now, don’t fear anything, if there are things you want to do then try, you may surprise yourself!

When it comes to family understanding, even the best brains don’t know how this illness works, how or why it affects us all in so many different ways. It cannot be easy for them to watch us suffer many of our symptoms are not visible, so we may be expected to carry on with life as normal, we keep going until we can go no further and results in MELT DOWN. Our fear of upsetting and disappointing people can be a problem… Sorry I am rambling, don’t know if any of this helps.

Stick with it just keep pestering people, you will hopefully find a sympathetic ear, you have mine! Good luck

Jon, I think you should give serious consideration to jacking your job in. To end up in that state is not fair on yourself.No way should you be putting yourself in this type of situation. I believe that stress makes the symptons far worse than you would normally have to cope with. With regards to seeing someone for help is there not a PD nurse you can speak to ? I expect the reason your family don’t talk about it is because they are a bit scared of the future. Sit them down and explain that you need to talk about it with them. This is a disease which we all need help and support with. I am more than willing to talk things through with you if there is no one else you can turn to.

Hi Jon B,
So sorry to hear you are having such a distressing time. I think you have two priorities here. First, you need to find a good Parkinsons Nurse, or a GP who has experience of dealing with Parkinson’s. (Not all do ). Secondly, you need to get your family involved and share with them what you are dealing with. Their support will be invaluable if they have some understanding of what you are going through. Be open with friends too. A support network is such a help.
Don’t let this beat you (easier said than done, I know). One last thing. If you are interested,find a local singing group or community choir. Singing has proved to be beneficial in so many ways.
All the best.

Thanks all for the posts, info, support, advice, …

Been resting this week, and staying off the PC. hence the lack of response on here

As previous post, spent most of Sunday in and between various hospitals due to a being given wrong information. Ended up at local GPAI with bag packed in case it was an over-nightery. Had usual Obs and some blood drained (I guess for tests, but it was worryingly close to Halloween, so maybe not :smile:) and saw a couple of doctors.

As they said, GPAU is a bit of pot-luck on who you see depending who is on. I saw a hospital GP and a Diabetes specialist, both thorough and professional and pleasant, but (by their own admission), not experts in my situation.

There was worry I was showing some signs of “Guillain Barre”, but that was discounted. I am glad, as I had a friend almost died of G-B over 30 years ago, and they are still affected by it now.

In the end it was decided not to keep me in (again glad). write up my incident, notify Neurologist, and I re-ring PD Nurse in the morning. if I cannot get through I ring Neurologists secretary and get things moving.

Finally got to speak to PD Nurse Tue afternoon. One of the 1st Questions was if I had had a cold/flu recently. Yes (as I had told the various doctors I had seen), quite a bad one, which I was at the tail end of. Need to get over that before we see about changing meds or doing anything else.

However, a couple of days later a letter arrives and I now have an appointment with PD nurse in 2 weeks and finally a booking with the Neurologist in late April '19 (about 22 months after last session with Neurologist).So things are finally moving in the right direction.

Re work: I appreciate that they are not on my side, believe me I have had enough issues over the years. But leaving (under whatever circumstance) is not an easy option at the moment given my situation. I have spoken to my boss, and have made it clear that that 60/70/80+ hour weeks are stopping - NOW

I will look into, and talk with my GP & existing PD professionals about alternative locations and more frequent sessions.

as far as family/friend go we have had the chat many times about supporting me, asking me (not assuming), and not treating me like an invalid and trying to do everything for me. Yet my wife has not asked me a thing in the 3½ years I have been diagnosed. Very few friends ever raise it with me, and I have distanced myself from some who were not supportive. I have always said to ask me anything, there is nothing im not prepared to talk about, but still nothing. I think need to have the talk again, though not sure anything will change

Re stress management: Independently a small ball of grey fluff has just arrived this week in the form of an 8 week old kitten. so lots of stress relieving stroking and purring - or lots of stress chasing around stopping her scratching everything and cleaning up after her :smile:

Believe me, Singing is not my thing, the kitten at full MEEEEOOOWWWWWWWWWWWWW is more melodies than me :blush: But thanks for the suggestion

Things are moving in the right direction I think. hopefully the session with the PD nurse will move things one another step, but it is going to be a log, slow journey.

Again, thanks for all messages and support. I will keep you informed.

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Happy to chat Jon. I’m in requip xl too. You can find my number on Spotlight YOPD website. Contact button G x

Hi Jon b
I think reading between the lines you are slowly but surely getting there and you will eventually do whatever is best for you.
As for Friends and relatives not wanting to talk or not meeting you anymore I’m afraid anyone with any debilitating condition very soon realise who their real friends are ( such is life)
Good luck my friend the forum is one place you can depend on for friends and opinions even if you don’t agree with some no problems
Keep in touch
Tommy :pill: