My introduction


#1

Hello all


#2

Apologies - prematurely posted by my tremor, not by intention!

Let's try again...

I've been on the site for several months, but only really started to use it in the last week or so, since I got my date for DBS.

I was diagnosed late 2011, but have had symptoms going back to the early 1990's and probably beyond.  My PD was very slow in progression until 2010 when it started to speed up - the mild tremor that had been with me for many years suddenly became stronger and has now progressed to a strong/violent tremor affecting all limbs.   My neurologist (Robert Adam at the Norfolk & Norwich - now sadly gone to pastures new in Australia) referred me to the National Hospital for Neurology & Neurosurgery in London for DBS.  I was assessed by the team at the end of  September 2015, and recently received a provisional date for surgery - 19th April 2016.

Currently not taking any prescribed medication, but have trialled ropinerol (no positive effect, but caused itching and nausea), co-careldopa and pramipexol (no positive effect but caused heartburn, nausea, itching and a skin rash), trihexyphenidyl (no positive effect but caused complete lack of motivation which persists to this day) and Madopar dispersible (positive effect on tremor but caused heartburn, nausea and IBS so severe that I had to discontinue after 5 or 6 weeks).

I live in North Norfolk and do not currently work.  In the past have worked in the hotel & catering industry, was an IT consultant for many years, and more recently have been renovating my cottage (still not finished, but will get there in the end). 

Currently scouring the internet (including these fora) for information about DBS, particularly in relation to the team at the NHNN - my consultant is Mr L Zrinzo.

Ian


#3

Hi Ian and welcome to the forum. 

You aren't the first to post an incomplete message here as a result of tremor and you won't be the last. I have sent loads of partial text messages for the same reason. 

My Parkinson's nurse has suggested I think about DBS so I should be reading up on it too. I have met a few people who have had it and they seem quite pleased. There are a few people on the forum too who can tell you more.

Elegant Fowl


#4

I had the same problem at first. But I did some alterations on my keyboard settings and now I am  finding it a lot easier Parkinsons UK mentioned something about voice text. You use your voice instead of typing. It will be worth giving them a call


#5

Hi Selfbuilder and welcome to the forum,

I'm sure you have already found some information about DBS surgery on our website (http://www.parkinsons.org.uk/content/deep-brain-stimulation-surgery-parkinsons), but I hope other forum members who have first-hand experience can share it with you. 

Following Crystal's message, here is the link to the post she mentioned with advice from Joanne, a member of Parkinson's UK digital team: http://www.parkinsons.org.uk/comment/201653#comment-201653 In this post she suggested getting in touch with AbilityNet (https://www.abilitynet.org.uk) for help with computer accessibility and checking out other helpful suggestions here: https://www.parkinsons.org.uk/content/help-getting-online. However, please read her post for more detailed information.

Best wishes,

Mara
Moderation team

 


#6

Thanks all

found some really great information on YouTube including a BBC documentary featuring my surgeon performing DBS at the NHNN.  Feeling reassured. 

Cheers,

Ian