Newly diagnosed – Finding it all overwhelming

About Parkinson's and health Newly diagnosed
1

Hi,

I am a new member of the forum, having just turned 50 and been diagnosed with Parkinson’s. To be honest it has come as a great shock that I have degenerative brain disease and I am not coping well with the diagnosis. I feel completely overawed.

About three years ago I started experiencing stiffness and restricted movement in my right shoulder. I tried exercises, stretching and physiotherapy, but with little joy. I then noticed a number of other issues such as no arm swing, deteriorating handwriting, difficulty sleeping, changes to bowel/bladder toilet habits, plus constantly feeling tired, drained, down and emotional. Sadly despite visiting my GP and other health professionals to discuss my symptoms nobody saw the big picture and picked up on a possible link to PD. I was basically left to feel like I was going mad and told to just get on with my life.

In January 2017 I returned to my GP and insisted that something was wrong. To cut a long story short, after various tests and MRI scans etc. finally I was referred to a neurologist, who with the aid of a DAT scan and some rudimentary tests has sadly determined I have Parkinson’s.

As a keen sportsman the diagnosis has really knocked the stuffing out of me, especially as it is affecting my dominant sports playing arm. At present I am struggling to see much of a future, as I am informed my symptoms will only get worse and spread to my other side. My job involves considerable driving and writing, so now I am worried that sooner rather than later my illness will be too much to disguise and potentially I may lose my job.

The worry and stress of the last few years has meant that I now feel anxious and down most of the time. Hence, I socialise less and have become withdrawn etc. I really don’t recognise myself any more. I am not the confident person I used to be. At work I put on a façade that everything is o.k. and no one knows of my illness, but the reality is I feel that I am sinking fast.

For example there seems to be a continual battle whereby my right hand attempts to do a task, but my left hand takes over, because a part of my brain seems to be sensing the difficulty and thereby by-passing the now unreliable right side. Worse still this results in a stubborn reaction from my right side in trying to still undertake the task and so the battle continues. The level of dexterity and how quickly the task needs to be completed tends to determine which side takes control. However, it leaves me in a continual state of ‘battle’ and mentally shattered.

I have just met my local Parkinson’s advisor and nurse and explained to both that I do not feel in a position to start on medication because I feel overwhelmed by the level of confusing information out there. To help me start to find ‘my path’ they suggested trying the forums as I have lots of questions that others may be able to answer or provide personal insight.

I feel that I am under a heavy load at present and trying to cut through the waffle to the useful advice is really weighing me down, so any help, advice or guidance would be gratefully appreciated. Hence, please check out my questions which I have hopefully posted in the correct forum areas.

Thanks in advance to anyone who takes time out to acknowledge and/or reply.

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hi sorry to hear your not coping v.well i think you should try medication as it
will help there are many options your pd.nurse will be there to support you but at the end of the day it,s your choice.hope you can sort things out
petec

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Hello, we both have a similar story, I have recently turned 50, was very active and recently diagnosed (august). I have taken the meds unlike you but as of yet not feeling any symptomatic relief but I am optimistic. The insomnia , fatigue and depression is very difficult for me and is by far my biggest challenge. On a positive note for yourself at least your managing to go to work. This is something I havent managed yet since diagnosis but I am optimistic about getting at least some of my issues under control to at least give me some sort of choice. Despite the crap hand i have been dealt determined to fight it.

Keep going brother..

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Hi everyone , my hubby (46) has experienced similar symptoms and feelings of despair when he was diagnosed 4 years ago. I understand your feelings of shock and desperation but I would urge you to consider medication as this may dramatically improve your situation and feeling of well being. My Oh was a HGV driver and we were desperately concerned about his job and how we would manage and what the future holds but since being medicated my hubby is much more positive, Parkinsons is a DDA condition so his employers made job changes and yes sometimes he is unwell but please be assured that things will get better and given time you will slide back into some form of normality, hang on in there, it will improve klou

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Hi Dazed and confused,

A warm welcome to the forum.

I'm really sorry to hear that you haven't been coping very well since your diagnosis. We know how mentally and emotionally distressing this can be for those affected by Parkinson's. As you've seen already, you are not alone with many of the concerns and worries that you've shared in your message and I'm sure you'll receive more support and well wishes from the forum community.

There is a lot of information out there about Parkinson's so it is completely understandable why you'd feel overwhelmed, this is very common so please do not feel like you are alone on this. With that in mind, I just want to bring your attention to the 'Newly Diagnosed' section on the Parkinson's UK website - there is a lot of useful and trusted information here that will answer many (if not all) of your burning questions. We've had great responses from people like yourself who have found this section both informative and reassuring - you can visit the page here.

I would also encourage you to contact our helpline on 0808 800 0303 where you can speak to a Parkinson's specialist about your main concerns and they can offer additional help and support on your medication.

I do hope you find the information above useful.

All the best and kindest regards,
Reah

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Hello Dazed & Confused - It is not at all a surprise that when you were told you had PD you were shocked, most if not all of us on this forum felt the same way, including me!. It takes a little while to accept the DX (diagnosis) and I for one was reluctant to accept any medication at first, mainly because I thought they had got the DX wrong. I went for a year without any meds and became steadily worse, in the end I was literally begging for something when I visited my neurologist. So please don’t put the meds off for too long, they made a whole lot of difference to me - my best wishes, Sheila

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Hi
Look in the mirror and tell yourself “I have Parkinson’s - but it doesn’t have me”.
Take the meds to relieve the symptoms
Take plenty of exercise - physical, mental and social - it will slow or stop progression.
Join your local Parkinsons UK group
All this will help.

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HI,
being diagnosed with PD at any age is a massive blow. I was 49 when i was diagnosed and i thought my life was over. However, in my case the symptoms have been relieved/controlled with treatment and medication. Yes i have highs and lows (every day). But, as someone once said to me"parkinsons is a life changer, not a life taker.Trust and talk to your pd team and try the meds.

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Hi,

Thank you to all of you who have taken time to reply and share words of wisdom and encouragement. From your replies I have taken reassurance that I am not alone.

Whilst it can never reverse my diagnosis, I have found the whole exercise of writing about my symptoms and feelings, then reading about your experiences, very helpful in trying to work through my shock diagnosis.

Sorry I haven’t replied individually, being new to all this I did not know the format, so I have waited and replied to you all in one go.

At present I still feel that there are big chunks of information missing about what I am suffering with. This information, good or bad would help me to be more informed and make better choices about my health, diet and medication, questions about which I posted on the forums.

I see my PD nurse in the next month and will be asking lots of these questions in the hope of receiving some answers. If I do receive useful answers I will gladly share them on the forum.

Finally, apologies if this is old news, but I wanted to share something that I found very interesting with you all. I have just finished reading a book called ‘Brain Storms’ by Jon Palfreman. I found the book amazing in so much that I could hardly put it down. It is so well written and so informative.

I won’t spoil the read for you, but its strapline is ‘The race to unlock the mysteries of Parkinson’s’. It is a riveting read, right to the last word and certainly left me feeling better informed and with increased hope, knowing that so many people worldwide are working on unravelling Parkinson’s.

As it has been of help to me I thought that I would share the recommendation. I hope that you find it interesting too.

Sending you all my Thanks and Best Wishes.

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Dazed_and_Confused
Yes, take the medication eg. madopar asap. It is a “no brainer”. It will mask the PD symptoms. I have myself been diagnosed with PD since Aug. 2009. My wife can tell easily when I am “on” or “of” by the way I talk, or walk. Yes it is a sad reflection on the research community spending £m’s in the last 60 years, that the likes of madopar and sinamet are still considered the gold standard (best) drug for PD.
Frosty

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Hi dazed and confused just picked up your thread and reading between the line I think you are trying to take too much info in, I was diagnosed in 2010 no scan just the main doctor asking me to walk to the end of his room and back again. Well what you have got you will be pleased to know "you are not going to die from it " “you have Parkinson’s” I was very lucky as I came out from the doctor’s room an elderly lady was giving “Parkinson’s” leaflets out she advised which were best for early diagnosed people, now to go back to my comment above, I saw a DVD with the leaflets and ask if I may take one, well said the lady it’s not a DVD for early stages of PD so I would not advise you to take one, any way me being me I did take one! Well!!! it was a shock seeing how PD would develop (not the same for every one, we are all different) but I had a few tears, so the morel of my story is take each day as it come’s don’t rush, think of PD as a different part of your life, share PD with your friends and family let them know how you feel, find new hobbies ect just remember as one door closes another opens. I would not take my meds for about a year after finding out I had PD but they do help, and of cause it’s another test for you, eg seeing your PD nurse and talking to her, I do miss work, having been a hair stylist since being 16 having two salons then teaching at college but I know that this part of me has gone and having found Parkinson’s uk doing a bit of fund raising, taking up Tai Chi, and Chinese brush painting my life is getting full again, plus there are a lot of people out there who don’t know about PD We can tell them what it’s all about, phew!!! sorry to go on and on but I hope you find a little of what I’ve written helps. ps the lady I spoke to also had PD for about 10 years.