My Parkinson's Journey Blog 1


#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 shit 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 (shit 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


#2

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 *******


#3

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


#4

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


#5

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


#6

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


#7

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


#8

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 


#9

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


#10

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


#11

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


#12

Hi already put a comment on but don't know where it is ! I'm a newly retired staff nurse and diagnosed in June and struggling! 


#13

Sorry to hear that you are struggling, I don't know what you are doing to cope with this dreadful disease, but I have found that writing and chatting to people about it helps me to cope with it.

take care

Prof.


#14

Thanks for Your reply ,I can sympathise with the mood swings you described in your introduction. My physical  symptoms are mild but I am suffering from a lot  of the non motor symptoms of parkinsons and am terrified I will develop dementia.I have good support from my family but you can't beat speaking to someone who has this terrible disease. Interested to note that you are Thai,  I regularly go for Thai massage with a young Thai girl recently come to England and this does help with my stiffness in limbs. 

Have a good day and hope to speak again.

Helen 


#15

hi Helen so sorry to hear your struggling .have you got a designated parkinsons nurse if you have don,t be afraid to use their knowledge i cant speak highly enough of the 2 i,ve had good luck


#16

Hi Peter , yeah I have a parkinsons nurse  and as you say they are excellent, problem is I have read extensively on internet and scared  myself  worried I have lewy body dementia which has similar symptoms to parkinsons. Hope you are OK. 


#17

hi Helen i know it can be scary but i am 9th member of my family to have parkinsons over 3 generations all have had different symptoms dad has v.recently passed away at 87 while his sister was 81 when she died so try to stay posative and don.t get to down


#18

Hi Helenl

I was diagnosed spring 2016. I had suspected PD for sometime but it was still a huge shock. Lots of mental and physical adjustments to make.

I started by reading up as much as I could and frightened myself half to death. Mohammed Ali died shortly after and the papers were full of it. Couldn't sleep for thinking about PD and what might happen in the future.

Then someone reminded me no one could predict my health future. For a while I stopped reading anything about PD. Then gradually started reading selectively - never before bedtime.

I'm only just beginning to "get my head round it". I still have wobbles about it - last year I panicked assuming I was incontinent before realising it was only my hot water bottle leaking! I can smile about it now, but I have never mentioned the incident to anyone else before.. It disturbed me so much I couldn't sleep for the rest of that night.

I still have gloomy times. But life is good. There's a lot of things I want to do yet and these days I think "what the hell - lets give it a go" when faced with a new opportunity. I am a 64 year old granny by the way!

wishing you well Daffy


#19

Hi Daffy , thanks for your uplifting reply , I'm 55 and was diagnosed in June 2017 after having strange symptoms for a couple of years including mild hallucinations when wake up in the night so terrified I have lewy body dementia as hallucinations are a hallmark of it , my neurologist is aware and says the hallucinations in lbd are strong and vivid not what I'm describing and his diagnosis is early parkinsons . I have read in depth that hallucinations in early parkinsons are rare and a predictor of future dementia in wasn't on parkinsons drugs either ,on rasagiline now.Anyway your right nobody can predict our future health with or without parkinsons. Good to chat and thanks.


#20

Thanks for that Peter apparently everyone's parkinsons symptoms are different and my neurologist says we will treat symptoms when and if they appear , I've had mri scan which was normal but dopamine transporter scan abnormal confirming diagnosis of parkinsonism