New and frightening

Hi my story with Parkinsons started on the 5th of September with my diagnosis at sheffield Hallamshire hospital told you’ve got Parkinsons lovely. Since then I’ve not gone back to work feels like the end of the world.my wife JOANNE had a brain haemorrhage in 2008 from a avm so we had a difficult time getting her back to solid ground .my problems started a couple of years ago with depression I thought caused by many years of fighting to get us back to a good life then this happens. I’m 63yrs old I’ve got symptoms of poor finger control slight tremor in left hamstring when crossing my legs but anxiety and depression is the main problem and little muscle pain in arms and legs my left arm doesn’t swing to far.when been examined my hand did tremor to my surprise quite badly.i work for a small tv company we install and deliver TVs washing machines fridge freezers I’ve work there for 46yrs just started to work 4days a week but now thinking do I carry on mainly due to my anxiety in a job which I’ve done for so many years which is madness . We own our home which a downstairs toilet and shower room which was installed a couple of years ago to help my wife. I’ve got a pension pot of around one hundred thousand pounds so worrying do I stop work now and use that money to get me to my state pension while I’m pretty good and mobile because JOANNE has balance issues and cognitive problems.if I do stop work does my anxiety get worse because I’ve got more time to worry about our future I cannot stop being emotional (crying) about the situation going to see gp tomorrow to get more time of work will be back at Hallamshire in a few weeks time to see pd nurse.this is first time writing on any forum so sorry for my poor layout,derek

@Scorsby Derek hi and welcome to the forum. I’m new to writing on here too but have many years of experience of PD with caring for my mum for 5 plus years and I can also share my own experiences of anxiety and depression and their effects.
I had my own mental health issues when my mum was first diagnosed which was the main reason why I stopped working. I was 42 years old when l took the decision that life’s too short to do a job that caused me stress and anxiety. I had many months of counselling to enable me to reach this decision, it wasn’t easy. Is speaking to someone who is not emotionally involved something you would consider?

You say you have some savings available to you. It may be worth while contacting your local CAB office to help with a Benefit Review; not all benefits are means tested and you may be eligible to apply for PIP (Personal Independence Payments, for under 65’s) or carers allowance if you spend time caring for Joanne. Depending on age and how her health issues affect her, she may also be eligible to claim PIP or Attendance allowance (over 65) (I’m not assuming her age here!)

Do hope my reply is of some support to you and I wish you both the very best for a long and happy future together.
Be kind to yourself Derek life is short.
Debbie x

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Hello, what you are feeling is entirely normal and very common following a PD diagnosis. You have had the rug pulled out from under you and as you have written, a dozen or more questions and anxieties that often seem conflicting. There is a awful lot of information about not least on the Parkinson’s UK website but right now I would encourage you just to stop and take a deep breath and sort out what you need to know and do now. You don’t have to do everything at once and to try will just overwhelm you. You need time to get used to the idea which you will. You say you are going back to see the PD nurse in a few weeks and in your shoes this would be my first goal namely to use the time between now and then to think about what you want to know and questions you want to ask at that appointment. For what it’s worth anxiety is a non motor symptom that I too live with and which was a major factor in my giving up my busy demanding job. There are no easy answers as it can make decision making harder but for me it is a matter of trying to be self aware and recognise what is happening so that I can rationalise it and minimise the risk of frustrations; it is not an exact science but it works for me. Hang on in there, this is a period comprising a sharp and unwanted learning curve but you will learn to live with it and you do have time to sort it all out. I wish you well.

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Hi @Scorsby,

A warm welcome to the forum.

I’m sorry to learn of your recent diagnosis. The advice you’ve received from Tot and Debbie4767 is spot on and I agree with Tot, you should definitely list some questions for your PD nurse in time for your next appointment. Parkinson’s affects everyone differently so it’s completely understandable that you’re feeling emotional, we have a ‘newly diagnosed’ section on our website which has all the information and support you need at this stage of your journey, including an introductory guide to Parkinson’s containing information about symptoms, treatments and living with Parkinson’s. You can find this information here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

Also, it is not uncommon for people with Parkinson’s to experience anxiety, however, there are a number of ways to manage it with medication, lifestyle changes and therapies. We have more information on this here - https://www.parkinsons.org.uk/information-and-support/anxiety

Our free and confidential helpline and Parkinson’s local advisers are here to answer any questions you have about anxiety. Call us on 0808 800 0303.

I hope you find this information helpful.

Best wishes,
Reah
Forum Community Manager

Hi Derek Welcome to the club! Baz was63 when diagnosed, is 71 now and still going strong on minimum medication but maximum exercise .one of the biggest things was a visit to the European Parkinson’s Therapy centre in Italy where He learnt that Parkinson’s was living with himand that He’s in control not the Parkinson’s.Both of us learnt a lot and I would thoroughly recommend a week there , be a lovely holiday for your wife too!
Still early days and hard to accept but being in control, taking each day as it comes and to the full,don’t worry about 6 yrs time, we can’t change the past ,we don’t know what the future holds but we can make the most of here and now

Hi I’m new to the forum and have been reading a lot of topics. I was diagnosed 3 years ago at the age of 56. I have been trying Sinimet, Ropinirole, amantadine , amitriptyline. Unfortunately I still have mobility problems and don’t actually feel better. I don’t know if this is what’s the norm for PD. I would like to hear if other PD members have experienced the same and what the solution would be.

I know I should be pushing for answers but just wanted to hear back from fellow sufferers rather than being told ",no two people have the same symptoms ".

I would love to hear from anyone please.

Thankyou
Karen

Hello, nice to have you join us and sorry to hear you don’t seem to feel you have had much benefit from the meds. To be honest I have been mulling over what to write to you and am not really sure what to say. It is true to say we all experience PD differently although there are obviously some common factors and the way we each think and feel about the cards life has dealt play theirrr part. If I were to take what you have written literally, not my normal style as I try to read between the lines a bit and offer a more considered response, but if I do take it literally, I wondered if you were expecting too much of the meds and your mobility. You don’t say what mobility problems you have but were you perhaps expecting to move as you did pre diagnosis once on meds? Pure conjecture of course and please don’t misunderstand, it is not a criticism of you, just something that came to mind because of what you wrote. Similarly you write you don’t actually feel better. Taken together it seems to me either your med routine is not right or are you perhaps experiencing some of the many non motor symptoms such as low mood etc which may be an explanation for some of what you are feeling. I am not a doctor, I only know the little about you that you have written and fully accept I may be way off the mark but on the other hand, perhaps it will have caused you to think about your PD in a bit of a different way. I was formally diagnosed almost 10 years ago and I tend to think of my PD as a continual and never ending learning curve, some bits being steeper than others, but the nature of the beast is that it is only temporarily static. For me by far the strongest line of defence is to do my best to stay well and most importantly, stay positive - to be hugely simplistic here and in reality it is far from that, it’s a mind over matter approach. The meds I take support this but do not change the fact I have a chronic, no cure condition and the meds won’t in effect make me 100% well. I don’t know if this will make any sort of sense but I hope I haven’t caused any offence as that was not my intention and maybe you will be able to take something from it. I wish I had some simple, straightforward solutions for you, unfortunately I don’t. I think that is something we would all like, maybe one day.
I wish you well.

Hi there firstly can I say a huge thank you for replying to my post and secondly I have not taken offfence at your reply. On the contrary it’s good to hear someone tell me that the medication isn’t a wonder drug and low mood can be one of the problems which I didn’t realise. My main problem is my legs and lack of muscles plus the fact I need to lose about 4 stone in weight which is easier said than done! I just find it hard when I see friends who are in their 80s walking or even just standing better than me.

You are correct in me thinking that the drugs would make everything better. The other thing I notice is that not a lot of non PD people know a lot about PD and that includes Occupational health at work. I currently work 30 hours a week and have worked there for nearly 20 years and am having regular inspections by OH and Health and safety to make sure I’m safe and also my colleagues, which again is very stressful.

I certainly have lots of adjustments to do including accepting help and advice from people who offer it.

Thankyou again :slight_smi

Hello, I am glad you found my reply helpful; it is always something of a fine line between saying something useful and making matters worse but I have always tried to be honest and generally it reflects my own approach to living with PD. Just so that you are aware there are numerous non motor symptoms associated with Parkinson’s it is not uncommon for these to be more difficult to manage and live with than the physical, motor symptoms. It is something to bear in mind as things change or you do not get the response you were expecting or hoping for.
(https://www.parkinsons.org.uk/information-and-support/non-motor-symptoms-parkinsons)
It doesn’t help that some consultants and other health professionals do not always give non motor symptoms due weight and the focus is on the physical symptoms.
You are correct in your view that most people know little about PD unless they have had some contact and the limit of the knowledge is often that people with PD have tremor. I am quite open about my diagnosis and that does offer opportunities to inform those I come into contact with if and when appropriate - it may not be much but is my small contribution to increasing understanding. It is equally the case however, that many people diagnosed with PD know nothing about the condition until coming face to face with it and embarking on a steep learning curve, as you are finding out. You will find a way to live with it, we all do in one way or another, and the forum is a useful source of support in whatever way you need. I hope your post and the responses it generates will mark the start of finding ways you can live positively with PD. Please feel free to ask whatever you like here on the forum, there is usually someone who can help and if you have any particular questions for me on the back of anything I have written, please do ask. I will be happy to help if I can.

Hi everyone thanks for the reply’s very helpful my wife agrees with you that I have to give myself more time to process what’s happened and concentrate on the near future not what may happen in the future.we have a mini dachshund which we have had for 6 months who what’s me to throw is ball and as no interest in me having Parkinsons just let’s have fun which has help me smile again. My wife of forty years has also been a wonderful support as family and friends so determined to get very positive about the future thanks again everyone derek