Back to top

My Parkinson's Journey Blog 1

20 posts / 0 new
Last post
Wildrover
My Parkinson's Journey Blog 1

Hi All, I have decided to write an account of my diagnosis experience and the events leading up to it. Hope some of you out there can relate to it and enjoy the read. (Edited names out)

 

My Parkinson’s Journey
Ian *******

Thursday 24th August 2017 – P Day

There I was, sitting in a reception room at BMI Healthcare’s The Alexandra Hospital, in Cheadle, finding it all rather posh but, nevertheless, thanks to my recent new job, enjoying the advantages of private health insurance.
It was certainly a far cry from a typical NHS hospital (the word ‘civilised’ springs to mind) and a clear confirmation that “Money talks”, as they say: no waiting times, here!

The room was mostly full of affluent-looking pensioners, chatting away with their long-term partners and in some cases, with younger family members, doing their caring duties.

Me, well I was on my jack, my partner Karen had been a couple of times previously with me for previous consultations, and it had all been a whirl wind over the past few weeks. We both felt that there was no need for her to take time off work, this was just another consultation with probably more tests and scans to follow to get to the bottom of the weird and unexplained problems I’d been experiencing.

I’d been referred to a Dr **** ***** – Neurologist, whose online profile states that he specialises in the following:
General Neurology, epilepsy, neuromuscular disorders, multiple sclerosis and Parkinson’s disease.
Hmm I thought “I must have some minor neuromuscular disorder”, Parkinson’s is for old people and besides, that sort of **** always happens to somebody else.

Mr ******, “that’s me”. Dr ****** came out to greet me and I instantly recognise him from his online profile, a larger than life chap with a kind face.

We shake hands and get the initial pleasantries out of the way. He didn’t at first seem well prepared, not even sure he needed to be, this guy must have seen hundreds like me strolling up to him, he must recognise the look immediately.

I have to remind him of the referral from Mr ****** the Neurosurgeon who couldn’t find anything physically wrong with my stiff neck from the resulting MRI Scan. Hah yes, he remembers. I then explain what my issues have been;

A Stiff neck, back pain, dragging of my left foot, loss of dexterity in my left hand, a feeling of constantly having an elastic band around my forehead.

He got the picture. He then did a series of checks, which include me following his pen, and him tapping my knees and ankles for responsiveness. He then went out the room and asked for a nurse (**** this is getting heavy now!).

More tests followed, such as walking up and down his office and finger tapping, which, with my left hand, I failed miserably: the whole thing lasted no more than 5 minutes (“I hope I have passed”).

He then went quiet for what seemed an eternity but was probably only a few seconds. I don’t know why it seemed an eternity because although I was a little anxious, (it had been a stressful few weeks), I was fairly certain these problems that I had could be fixed and it was nothing serious.

 
How wrong I was! Dr ****** then said to me “You’re an intelligent guy, you’ve done your research, what do you think it is”. “Well” I said, “my google self-diagnosis does indicate Parkinson’s”. Bear in mind I said this quite flippantly thinking it was absolute nonsense, but no I was bang on the money. “You’re correct you do have Parkinson’s.”

For the rest of my life, I’ll never forget those words, it was like being hit with a sledge hammer.

I can’t remember much after that, I was just numb. Dr ********* did explain that due to my age (50) he would need to arrange a DAT Scan to confirm the diagnosis. The nurse made me a coffee and talked sympathetically, but about what I have no idea: it was just words! I then left the hospital.

Once I got to the car I immediately called Karen at work, which In hindsight perhaps wasn’t the best idea I’d ever had and probably a bit insensitive but my head was all over the place. I told her the diagnosis, she didn’t say much, not surprisingly, only I will see you later.

I remember little about the drive home, other than asking myself “How did I get here?” and “When did it all start?........... for the answers, I need to take you back to early 2013.

 

To be Continued

Y am I here

Hi Ian 

Really great post, i can relate  to so much of it, but could never put into words myself. Please continue posting. 

Regards 

Kevin *******

Jusu

Well done Ian, looking forward to part two. You have put into words what most of us have been through.

Mine was a NHS scenario but the treatment by both consultant and staff has been spectacular.

Waiting for next instalment!

Regards

JuSu

JUJU

hi your experience was almost identical to mine.  I wonder if your part 2 will also be the same, looking forward to hearing from again

Wildrover

Thanks for the feedback guys, good to know somebody is getting something out of it. Should be able to post the second blog early next week. I think its going to take quite a few blogs to give you all the full picture. Like I said in the blog, the symptoms as I now know them started back in 2013

Donkey

I loved your post and look forward to the next one.

peterc

hi been on identical pathway and although both my late father and his sister had parkinsons my journey has been has been very different can really relate to you look forward to part 2

ChrisC

Looking forward to your next post. My husband has been diagnosed with a form of Parkinson's mainly non motor symptoms. It's such a lot to take in 

Hilly

Hi, I was diagnosed after having tests for hand not working properly, you could say it was a massive shock. They couldn't find out what was wrong so had DAT scan which confirmed low dopamine levels. This was about a year ago. I also live in the North West . Look forward to next installment x

Wildrover

I posted the second blog in introductions and personal stories a couple of days ago

Joanie

Thank you for sharing Ian. I look forward to reading your next instalment. 

Pages