Feeling am a different person and not in control

Hi ya,

I have just joined the forum, I was recently diagnosed with parkinson on the 10th November 2020, which was difficult news to take in,

Am finding it hard to get my head around this, I feel like am not in control and I’m afraid of what is going to happen

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Hi @Lloydy1966,

A very warm welcome to the forum. Everyone here is kind, supportive, and helpful - as I’m sure you will soon see - so please feel safe posting here. We encourage sharing since it can be very therapeutic.

I’m sorry to hear about your recent diagnosis but you have come to the right place. We have a section of the website specifically for those who have been newly diagnosed and you may find some useful information on our What is Parkinson’s page too. We have a lot of good resources, so please do take a look around.

On top of that, if you need to chat, our helpline can be reached on 0808 800 0303. Whether you have questions or just want someone to listen, our advisers are there for you. You do not have to go through this alone.

Best wishes,
Joy
Forum Moderation Team

Hi @Lloydy1966, Welcome to the Forum, hopefully between myself and some other members we can allay some of your fears. For a start there is no need to change your lifestyle because of the diagnosis, whatever you did before, carry on doing it, in time you will know when it is time to tweek things so to speak. The thing to remember is you have Parkinsons it doesn’t have you, rise above it and treat it like an itch you can’t scratch and adopt an attitude of positiveness. We are all different and have our own coping strategies and this works for us but we have all been in your shoes and are aware that the initial diagnosis comes as a sledgehammer blow but there is hope. perhaps you can share with us more of what is going through your mind to give us a better understanding so as we can help point you in the right direction. Your GP Surgery should be able to put you in touch with a Parkinsons Nurse in your area, these people are absolute diamonds and are fully conversant with the disease and will help you all they can. In the meantime if there’s anything you want to ask feel free, I may not have all the answers but there will be someone on here who does. Take car and stay safe.

Les

Hello and welcome to the forum. What you are feeling right now is a common reaction. It can feel as if you have suddenly been dropped into this place where you don’t understand the language, culture or customs and have no idea what to do, or not do. The period following diagnosis can be a scary and difficult time but things do settle down. That probably seems highly unlikely to you at the moment but hang on to that because it will happen. What I can’t tell you is how long it will take or exactly how you will achieve this because it will be unique to you. Your coming to the forum as you have so soon after diagnosis suggests to me that you will be fine given a bit of time. That you recognised and acknowledged how you are feeling and sought some support is a strength that you should not underestimate. Living with Parkinson’s with its many complexities can be challenging, frustrating and one way or another is life changing. That is a simple truth and I would be doing you no favours by pretending otherwise. It is however for most people a slow developing condition that gives you time to adjust as you go along. All of us who have Parkinson’s have been through the early days experience that you are now having and we live to tell the tale. As I frequently write when replying to posts such as yours, a diagnosis of Parkinson’s is not the end of the world unless you let it be,but but you need time to get used to the diagnosis and get through the initial few months before you can probably begin to see that for yourself.

Take care and let us know how you are getting on.

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I encourage you to ask Parkinson UK about their first steps program for newly diagnosed. [cruisecontroller] gives good advice. Parkinson will SLOWLY cange your life BUT you get to decide how. SO if you decide to more of what you enjoy, who says life will get worse. I have 15 years of living with Prkinson’s and still travel the world. We helped set up “First Steps” 6 years ago. It was designed to get the right information to you at the point of diagnosis. We run a similiar longer program here at the European Parkinson Therapy Centre
Relax and take control

Hi,

Thank you for your reply, great advice, am having difficulty getting my head around having parkinson,
Am feeling really low in myself, my attention span is none existing, I have been told by my family that I snap back at them, I have no patience with anything, no matter what I am doing, it is stressing me out, which in turns makes me worse, if am feeling like this how in the early stages, this worries me so much.

Thanks again for reaching out to me.

Hi- I’m a week ahead of you with the diagnosis, feel the same. Emailed my local support person and haven’t heard anything. No contact from the Parkinson’s Nurse, nothing from my GP. I’ve had 1 telephone consultation with the neurologist but no date given for a future appointment. I’ve not told many people and certainly not my children. Tbh I feel like I’m drowning.
N

Hi,

Thank you for spending time to reply to me, you need to talk to your family about this, you can’t keep this bottled up inside, you will feel much better knowing that you are not alone, this is a massive thing for us to come get our heads around, please feel free to contact me anytime.

We are in this together.

Take care of yourself.

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Hi I’m just behind you @Swimmer_with_P and @Lloydy1966 having been diagnosed on December 2nd. I went to the appointment with the neurologist, which was fortunately an in person consultation, about difficulty handwriting and came out with Parkinson’s. I chose to tell my family immediately. My teenage children seemed fine but the look of horror on my husband’s face at the other end of the tea table will stick with me. The only bit of advice from the consultant was to join Parkinson’s UK, so pleased for that. I’ve quickly learnt that we are all experiencing PD differently which makes being isolated and without local support so much harder. I was told a Parkinson’s nurse (NHS I presume) would be in touch, none has. I spoke to a nurse on the helpline who was great and helped me decide to start medication for my particular symptoms and circumstances. Now I know I have Parkinson’s it is easy to attribute lots of symptoms to it, without knowing how they will develop or impact life. Symptoms that I and my GP had attributed solely to depression caused by work related stress, had already made work difficult. Now I know these aren’t going to go away because it is caused by PD makes the future at work seem bleak.
At 55 I seem to be neither in the young PD group nor elderly newly diagnosed group, are there any other female 55 year old newly diagnosed out there. I say female because we have our own issues! Happy to talk to men too though!!

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Hello, if it helps I’ve recently set up a Parkinson’s fb for women- called Iris has a dilemma … Parkinson’s. Take a look if you might be interested. It’s so crappy doo isn’t it? I usually feel more positive and exercise a lot but my back is bad at the mo and I’ve developed strange sensations in both legs which my logical brain says is PD but my emotional mind says something much much worse. Just need to work things out then I will, when I feel calmer and have prepared my wider family, tell my children x

Thank you Lloyd that is so kind of you. I am usually ‘ok’ but feel I’m in a bit of a trough at the moment. Winter, rain and covid don’t help. I will tell my family but want to settle everything in my head first. I want to tell my family in person but covid makes things so so hard. I’m feeling very emotional. Nightmare! Where do you live ?

Hello again Lloydy1966 and also hello to swimmer_with_p and penguin
Just wanted to say that I fully accept the first three replies from myself, cruise controller and Alman will be difficult for you to believe at the moment when you all feel as you do, and not helped in the least it must be said by the whole covid situation. The early days post diagnosis are notorious in making many feel there is no future except a big black road leading down and from which there is no escape. Most people know little if anything about Parkinson’s and so when it strikes it can hit like a sledgehammer and completely flatten you, you effectively go into shock. The other thing that happens is that you get a diagnosis and then nothing seems to happen. You need to understand Parkinson’s is a hugely complex condition and treatment is effectively symptom control. It can take time to get that all sorted out but in most it is a slow moving condition and so nothing much immediately changes. What is true however or at least seems to be, is that the service can be variable and that is probably exacerbated at the moment with covid. If you were told someone would be in touch and they haven’t been, I would encourage you to follow that up, don’t just wait - waiting will in all probability, just serve to reinforce the frustrations and worries you have all expressed. I know from what others have written on the forum some have had to become a thorn in side of the medical team to get apps and so on. Parkinson’s is not well understood and it affects us all differently. Not only that it has a ripple effect affecting family and friends,and at some time or other all the elements of your life and how you perceive yourself. That is the blunt truth that gives rise to so much fear but is certainly not the whole picture what the three of us wrote is the reality you are facing. Yes there are lots of decisions and issues that seem insurmountable at the moment not least who when how or if you should tell folk but things really do settle.Right now take it a one day at a time, acknowledge your feelings whatever they are they are legitimate. You may have to take it on blind faith just now as you face the early days rocky road, what we have written. I am 12 years down that road and have only 2 hrs help a week which I arranged privately. Keep going, and keep posting if it helps. You will get get through this. You will be alright it will just be a different alright but you can still have a life worth living but it doesn’t happen overnight.

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Thank you x

Hi swimmer, I live in Goole, East Riding of Yorkshire.

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Hi Lloydy (and everyone else),

I know exactly how you feel mate, I was diagnosed 2nd week in December. I went into Neurologist thinking I had a trapped nerve (Id been having trouble typing with my right hand over 6 or so months). He examined me did some tests and then told me I had PD and the next 15 mins I was in shock and didn’t take anything in.

I live in Skidby, East Riding. I have a Nurse phoning me back in 3 days and a video session on the 18th. My family have been amazing, Im trying to be positive but I get upset about the future and my quality of life.

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Thanks @Swimmer_with_P i have found your fb group

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Hi @Dew1970, reading about the experiences of folk it seems like there is no consistency in terms of care, or sequence of what happens immediately post diagnosis. Whilst the NICE guidelines give general guidance, from what i can see it lacks committment or provision for that individual immediate provision of support that we all crave for in our moment of shock and in the days and weeks after. Some people seem to get support, others dont. Thank goodness for Parkinson’s UK!

I’ve been recently diagnosed as well and not on any medication but struggling big time with sleep sometimes not sleeping at all to 3-4 hours. I’m reluctant to go on medication because of the side effects. I have a slight tremor in my left hand

Hi @Enzojett,

I’m so sorry to hear you’re having trouble sleeping - you are definitely not alone in this. We have a page on sleep that explains a bit about the different type of sleep issues, as well as some potential tips.

I can certainly understand the reluctance to take medication, but there may be other alternatives for you than pharmaceuticals, or perhaps just a very low dose of a drug. I would suggest reaching out to your GP, specialist, or Parkinson’s nurse about what options are out there for you - just to see.

You can also ring our helpline on 0808 800 0303 with any questions or concerns you may have about your sleep or how to get it back on track.

Best wishes,
Joy
Forum Moderation Team