Gradually moving towards to DBS

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1

Hi to All,

Went to the John Radcliffe Hospital (JRH) in Oxford yesterday for the neuropsychological assessment part of the process. The grey matter really did get tested! Lots of listen and repeat things, lots of shapes and pattern type tasks, recall tasks, reading words but saying the colour of ink it was written in, what comes next in this pattern sequence etc. It tests how well your brain receives information and how it handles and processes that information. There are  a few very basic questions that, I assume, check you are "connected" to the world around you, like, who is the president of America? etc etc.

For some parts of the assessment you only have a  set time to answer/complete a task, other tasks are not time bound but for reference purposes the time you take is recorded. The 'ole grey matter was on top form yesterday because the Assistant Neuropsychologist conducting the test said she'd never had to write so fast nor write so much down for some of the answers! I stormed through the tasks for one chunk of the process in 50 minutes the average time is around about 1hr to 1hr 10 mins.

Spent a fair slice of time with the Neuropsychologist, very open and informative and most certainly not an appointment to worry about. The team were all very friendly and made the process flow along nicely.

Next assessment is with the Movement Disorder team, that will be the stop meds the night before, go to the JRH, "jump through hoops", take meds await for them to kick in then " jump through hoops" again, process, that is due later in April.

Regards to all,

tractorman.

 

2

Hello Tractorman and hope your well. I have to be honest i find the DBS a dark area as not looked into it as haven't given those any thought as not in that position. Are you definitely having procedure and tests just to make sure everything ready for it and ok.

You sound like your taking it in your stride but must be scary. Drop me a line whenever you want a chat. Sorry don't know much about Tractors and ifnd the media are all Combine Harvesters.: ) If we don't speak again my best wishes and hope all turns out well.

Regards John

3

Hi JP,

Yep, not too bad thanks. Been to the Dentist this morning for a special procedure known as "wallet lightening".... Just a check up, scrape and polish.

Re DBS as I've been on the redline of levodopa/carbidopa intake for a couple of years now coupled with the fact I'm only 53 DBS is, for me, the next logical step in PD management.

The assessments are to check where you are at, and wether DBS can help or not. Last weeks neuropsychological assessment checks how the brain is functioning today because DBS can impair brain function. Thus if the 'ole grey matter is not up to much today, I guess DBS wouldn't be advised. Plus if DBS goes ahead they have a benchmark to compare when a post DBS assessment is made.

The next assessment, end of April for me, starts with the PWP in a fully "off" state. Tests are carried out, I'm not sure of the exact list but assume it will be things like walking, standing, balance, doing buttons up, writing etc. The PWP then takes their meds and when in the "on" state tests are repeated and a minimum of 40% improvement from "off" to "on" is necessary to stay in the game.

Thus until all the assessments are completed and the hospital hold their multi disciplinary team meeting to discuss the potential candidates for DBS, nothing is definite.

In terms of scary, you're not wrong there! At the first appointment last October they explained the process and the risks. Starting with death carrying a 1 in 600 risk, then in no particular order, brain bleeding, stroke, infection, the need to reposition the electrode soon after being implanted, the wires breaking, speech being affected etc etc.

They point out that DBS only has the potential to match your best med induced "on", not exceed it. Which would be very acceptable as far as I'm concerned.

For me, the diagnostic ball started rolling in autumn 2008 with a confirmed diagnosis of PD in June 2009. I can recall, what I now know are, PD symptoms back in at least 2006. I've been very well looked after by my employer. Yes I did change jobs to a lesser role but not until 2012, and courtesy of an insurance the company holds my pay check did not change.

2016 was the first year since at least 1978 that I didn't work any Saturdays or Sundays.

Best regards,

Tractorman.

4

Hi TT (OK?), That's a lot of tests to go through but all for the best. I actually thought you just said you wanted it and then on a waiting list till available. Good to see they are taking all considerable precautions and not sugar coated but just facts so you can make a clear judgement for yourself.

The going off state end of April sounds a tough enough job itself. My employers have also been good with regards to my condition and I packed Saturday's in last year but only since 1991 and Sunday's on only a odd occasion. Working that many hours i'm guessing you work in building / construction?

Wallet lightning, is that just the procedure or how much they take as well. Hope you have a steady time parky wise up to April and drop me a line whenever you want a chat.

Best wishes

John 

5

Lol and thinking maybe your a farmer with the name Tractorman. Would make more sense. My fingers work like my mouth in never waiting for brain.

6

Good Morning JP,

Not a farmer, I work in the farm machinery sector, I've worked for manufacturers and dealers. I've worked for my current employer for 19 years now. Our main franchise is New Holland, they manufacture a wide range of tractors from about 20 horse power up to 620 horse power, combine harvesters and balers. 

I've just noticed I used the wrong spelling for cheque in yesterdays post.

The sun is shining, the weekend is almost upon us, long may it continue.

Regards,

Tractorman.

7

Hey TM and hope your well and keeping the grey matter ticking over. 19 years is a long time. i have been with my current employers 10 years and previously 14 years working in a tannery, where i grow up so to speak.

Can tell your a craftsman with the reference about your spelling so must a lot of quality farming m/c's out there and need to be as i suspect can be very dangerous if not been operated or running correctly. I'm a bit up in the air with a bit more of a they'll work it out attitude. most others would call it lazy and probably right.

I'm on holiday at moment trying to shift this cough so hope you don't mind me saying hello. will have a look at New Holland site. i don't have too much knowledge other than big and noisy but my mum used to take me and my brother all over as kids and farming shows were some of them.

Hope the sun is still shining for you and hoping all the best for the DBS.

JP

8

Hi TM

I have just recently undergone DBS this month see my post DBS for an update.

 

BB xx

9

Hi BB

I am so pleased to read that your op is done and you are recovering well.

Keep in touch and take care of yourself.

Love

GG

10
Thanks GG my best to you Xx BB
11

Had a letter from the JRH at Oxford the other day saying due to unforeseen circumstances my appointment (DBS suitability assessment part 2) for the end of this month has been cancelled, but, now here is the rare part, my new appointment will now be 8 days earlier! It is rare I know so I'll enjoy it on that basis....

12

Good Luck TM hope all goes well.

JP

13
Yes TM I hope it all goes as planned best wishes xxx
14

Good Morning,

Thanks BB & JP, I'll let you know.

TM.

 

 

15
Please do and take care xx
16

Had the second of the two assessments yesterday at the JRH. It all went very well, managed to get significantly better performance after taking pills compared to when being tested pill free. Consultant was making all of the right noises for going ahead with DBS, I'll know for certain within next couple of weeks. Highlight of the day was the walking test, OFF and with assistance I took 3 minutes, ON and flying solo I took 12 seconds!

Will update again when we know the decision.

17

good to hear tm

 

xx

18

A little update on the road towards DBS. I had an MRI scan yesterday evening as part of the pre DBS routine. However dyskinesia set in big time, probably only properly still for 1% of the 45 minute scan. Looks likely I'll have to go back and try again under general anaesthetic. Ho Hum, nobody said this was ever going to be easy. Onwards!

19

Second update of the day!

Just had a call from the JRH giving me a date for an MRI under general anaesthetic in barely 3 weeks time! Top marks to the JRH for sorting it so rapidly, especially when you consider yesterdays scan didn't start until the scheduled 18:10! 

20

good luck tractorman xx