Feeling Lost

In January 2020 I went to my GP as I had a tremor in my left index finger. For years I’ve had a numbness in the right side of my left hand. I get it checked out every now and then and have always been told as it’s not painful it is best left alone. I just thought the tremor was something to do with that. I was supposed to see a neurologist in March. Enter Covid 19 and it was mid November before I saw anyone.

To add to the mix I have a couple of degenerate discs and suffer from sciatica. After seeing me slowly walk in to the room, his first thought was Parkinsons but he was also concerned that tumours were causing the problem. There was a 3-4 months waiting list for MRI scans but he arranged a scan after 12 days.

I found the whole MRI experience traumatic and my stress levels went through the roof when I read a copy the letter the neurologist sent to my GP stating his concerns about tumours before the scan.

Thankfully the brain scan was clear. I received another letter from the neurologist saying that the most likely cause was in fact Parkinsons. He’d arrange for a Parkinsons nurse to send me some leaflets and would see me in 6 months. Of course now we are back in lockdown it could be longer.

I have now received the leaflets and the nurse said he will contact me “in the near future.” Some days I read the information. Other days I cannot face reading another thing. I feel I have been left hanging.

We’re very sorry to hear about your difficult time, Paddington. Before our lovely community of PWP, carers, and family welcome you with their thoughtful hellos, we also wanted to say welcome to the forum. Feelings of depression, as everyone here knows, go hand in hand with Parkinson’s. Thankfully, you are not alone in feeling lost, some brilliants minds have gone to work on it, and there are lots of resources available to make things a little easier. You can read up on some basics here and of course take advantage of the website in general whenever you like. Additionally, you can call us at 0808 800 0303 to speak with a care expert directly.
Please accept our best wishes and warmest welcome to our community.
Moderation Team

Just to say it’s nearly six months since my “potential” diagnosis. I am still therefore in limbo land.

I have read about a lot of people who have been diagnosed with other conditions before Parkinson’s is confirmed. Parkinson’s is the first thing my consultant has come up with. If anyone else was given a potential diagnosis, how long did it take to be confirmed?


We all feel lost at first, I think, but there can be plenty of life yet to live, even with this thing hanging over us!

For me it began in 2005. Ish and eventually I was forced to confront it.,

Once upon a 2008 time
I was so lost, looking and hoping for a sign
That my future would some hope hold
Of Happiness & good health, 'cause I had just been told

That a certain Mr. Parkinson had taken over my life
And things may get quite tough for Mike and his long suffering wife
But thirteen years on and many, many drugs later
There is some hope because as a family, we’ve learned to cater

For the ups the downs, the ons the offs oh yeah, and the falls
For now when that damned Mr. Parkinson ‘uninvited ‘ calls
From our experience of his many visits before
We bring preparation and meds to the fore

And when he is done & back in his pit
We dust our self down and well, we just get on with it
Cause there’s life to be lived with family & friends
Parkie’s not gonna beat us whatever he sends

We’re gonna fight him with research and other weapons galore
And we will eventually show the old so & so the door
Yes then it’s goodbye old Parkie , yeah ‘good riddance to you’
Glad that your off and glad your not coming back too,

You’ve ruined my job prospects, even though I at least grow old
And if I may be frank with you ,and ever so bold
You came not in friendship you brought with you fear
And contempt for lives held ever so dear

So go now you devil go and bury your head
In shame for the torture the pain and the dread
You brought along with you , you evil old git
Cause we’re gonna beat you & then it’s back to your pit

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Thank you Mike_700 for sharing your poem. I found it to be realistic about the dark days and encouraging about living with “Mr Parkinson”.

Yesterday I had a bad case of “Why Me?” I was thinking about the irony of the past year scrubbing my hands and cleaning everything I touched to keep out Covid19 when this disease must have crept in long before lockdown started.

Then I felt selfish as so many people have lost loved ones during the pandemic and thousands have received belated news about their health.

Thanks again for sharing and reminding me to stay positive.