Half diagnosed

About me Introductions and personal stories
1

Hello everyone. How did I end up here? Well...

I've been  a Type1 diabetic for 21 years, had ulcerative colitis (now quiescent ) for 20years, asthma for 15 years, well controlled, chronic pancreatitis (auto immune) for three years, and a motor neuropathy for three years.

That last one, the motor neuropathy caused a significant reduction in leg power, and caused some discussion as to the cause. The end result of this was a stairlift, adapted bathroom, and lower rate PIP mobility. 

Last year, I was rising from a sitting position, when my legs started trembling and sat me down again. I also noticed my walking stick wobbling as I held it. It was when I noticed a textbook pill-rolling tremor in my right hand when I was sitting in the stairlift that I thought -this ain't the neuropathy worsening. 

Well, a visit to the Neourogy professor last week confirmed my suspicions of Parkinson's, but he cheerfully went on to say it could be Parkinson's Plus, the deluxe version it would seem. Anyway, he didn't want to start any treatment until a scan was done, and has referred me to the Movement disorder specialist. I think he was trying to tie in the neuropathy with the current symptoms, but I think they are entirely different. EMG studies show that the neuropathy is unchanged. So, another autoimmune disease chalked up. One of these days I might get something that will kill meconfused

So anyway, an explanation of the username. We live on the beautiful Isle of Mull off the west coast of Scotland. My neurology team are in Glasgow, so that conversation with the professor was, including ferries, four hours travel. Each way. Worth it though, a lovely sunny day and some fabulous scenery.

And Me? I'm 64 and retired. I used to be a doctor, but came on this forum to learn stuff, and chat with fellow stiff legged and shaky folk. Just cos I used to be a doctor doesn't mean I know anything about Parkinson's, as I'm sure a few of you have found. 

Ill let you all know when I've got the definitive diagnosis, or at least as definitive as it gets before post mortem. Hey ho, a new adventurebig grin

2

Hi Island Mike,

Above and beyond anything else your sense of humour shines through! You really have got plenty to deal with, makes having PD alone look like a walk in the park!

I look forward to reading more from you as time rolls on. I hope the forum helps you along the way.

Best regards & welcome,

Tractorman.

 

 

3

So that's the story from balamory welcome Mike good luck to you and I hope you find what your looking for on here . All the best Lord o the highlands Ian 

               ( ps  we are all different ) 

4

Hi Tractorman

Thanks for that. I work on the theory that I've got so many conditions that I haven't got a single one that occupies my mind to the exclusion of any other, and doing that diminishes them all. I wouldn't recommend it as a a standard tactic, mind, but it does work.big grin

Forgot to say, I'm on a waiting list for a left hip replacement, but the PD has slowed me down so much it doesn't hurt when I walk, only when I stand up and sit down. Bonusconfused

Mike

5

Hi Island Mike,

Quite frankly Sir, you amaze me. To cope with the five times whammy and now be told you have PD is mind boggling and PD at a deluxe level at that.

Your stoicism and humour shine through.

On a lighter side my wife of 54 years points out that I haven't had Man Flu since being diagnosed with PD. As a Doctor can you offer an explanation?

Good luck to you sir and stay on the forum.

Jules77

 

6

You are an inspiration to us all, although you must be disappointed that Housemaids Knee has passed you by.


Suggest you try lying down as standing and sitting seem to be troublesome - at least then when the above condition hits you wont notice it.


Parkinsons is a truly wonderful condition that tests your sense of humour to its limits most days.  I have been experiencing problems with severe wrist pain - that in itself is nothing you might think, but as I am totally reliant on my arms to get me out of bed in the night when the bladder urgency rears its ugly head, it takes on a whole new meaning..............................

At least we can look on the bright side - no athletes foot for us, we cant move fast enough to catch that one.

 

 

 

 

7

Hi Jules

Thanks for that. My considered medical opinion re Man flu is this: you haven't had man flu because you don't need it when you've got PD. It's so wonderfully variable that if you fancy a day  off you just announce to the world that you're having a bad day, and spend the day ordering cups of tea in a tremulous voice. The advantage of this is you don't need a temperature to pull of the scam. 

I spent years learning this stuff.cool

Mike

8

Well, last week I had my DatScan. This was a big adventure. Because of the early start and late  finish, hospital transport had to take me down to Glasgow the day before, and pick me up the day after. I had to stay in a hotel two nights, so I chose the Hilton Garden Hotel on the riverbank next to the preserved Finnieston Crane. Fabulous views across the Clyde to the STV building, the BBC and the squinty bridge.

The actual scan was a breeze, I fell asleep during it. Mind you, if I get comfortable and horizontal I fall asleep. That’s if I’m on my own, of course.

I’ll get the results in a couple of weeks, I suppose. The main thing is getting some treatment. The tremor isn’t too bad, I can cope with that, it’s the stiffness and slowing down. Seems to take me an age just to turn round, like the Titanic. 

I’ll let you know when I meet the iceberg of treatment...

9

Lets hope the treatment you are waiting for upgrades you from the Titanic to the glorious cruise liner the Queen Mary, as long as you are cool about wearing pink.

Maybe Titanic to speedboat would be a  better option, that way should you have female company the wake up call at the hotel won't be buzzing before you have had time to move over to her side of the bed.

: ) 

10

Hi Island Mike,

I do so hope that DatScan shows up definitive data that can be used to find a suitable medication regime to enhance the movement problems. Is that due to PD or the motor neuropathy or both?
Your sense of humour not only helps you but others as well.

For me, this new medication (Opicapone) to help reduce severity and length of of PD switch-offs is yielding positive results. Will be reporting on that soon

As far as travel to Glasgow is concerned, If commercially viable I’m investigating the logistics of modifying My BC Time Pod to use for local travel. The software algorithms need radical change, which I’m working on. Tobermory to Glasgow in forty seconds would be a distinctly possible.

Best wishes,

Jules77

11

Thanks TH and Jules

I don’t want to travel to Glasgow in forty seconds, I’ll miss all the lovely scenery and Alice, my favourite driver. As far as movements go, the motor neuropathy is completely unchanged in three years, so whatever anti parkinsonian treatment I get can only restore me to the level that the neuropathy allows. I still won’t be able to do stairs, but being able to turn over in bed would be ace. So would getting out of bed without seized up legs, come to think. And Mrs B would appreciate a non vibrating bed. Can’t think why....

12

Well Island Mike, I hope like Jules, you will be shifting to the left shifting to the right with ease.

If Mrs is a B are you an A ?

Stairs you have a lift, why worry.

 

Sleep well and lets hope news of a new treatment plan will follow.