I got the power

DBSII smI realise that it has been some time since I last wrote but I have been adjusting to life as a 39yo again, not a 39yo trapped in an 89yo body. The second stage of my DBS surgery was completed on 11 February this year. I only had a small patch of hair removed from my head and chest and the wires pulled down and plugged into the neuro-stimulator which was implanted in my chest. Straight after the surgery I was in obscene amounts of pain (in my head) but double the normal dose of morphine soon put paid to that. While I was in recovery (incidentally longer than the time it took to do the surgery) there were lots of people milling around talking and getting ready to go to lunch etc.  I am sure they were talking quietly but to me the slightest whisper was like a dagger to the skull and I remember thinking they better be quiet soon or I was going to get out of that bed and make them. That’s if moving without falling to the floor in a crumpled heap was a possibility. The effects of the morphine soon kicked in and I started to feel halfway human again, albeit now a human with a battery operated brain.  Cyber-AJ on the loose!

I was in Auckland Hospital for a few days to recover. The first morning after the surgery was the big “power-up”. Lorraine MacDonald our fantastic Movement Disorders nurse, came by with what looked like a label maker. No that was in fact the device they use to adjust my IPG. It was weird as the power was adjusted up and down til they found some baseline settings, but I didn’t mind, in fact it was quite enjoyable feeling my body come alive again after being cased in concrete for so long.

implantable-neurostimulator-for-deep-brain-stimulation-70691-3025919So this image is the IPG in my chest (about life size). I have a pretty big bump but I think it will settle down I think, as my Dad had a pacemaker for his heart and it went down after about 6 months.

It doesn’t feel uncomfortable but you know it is there. I am sure I will soon stop noticing it in time. In any case it is better than that apomorphine pump I used to wear, with a needle in the gut every day…

APO

 

 

 

 

 

 

Either way I tend to set off airport security. Can’t wait til we go Canada and the USA later in the year…I am sure navigating security will continue to be fun. At least I don’t look like a drug mule as much as I used to … something about a sweaty shaking stony faced guy standing in line at customs seemed to attract extra attention. Go figure.

In any case the effects of being powered up are almost instantaneous. I have required several tweaks and medication adjustments but that is to be expected. I do feel a great deal better, certainly not to the point I was pre-Parkinson’s but 100% better than I have felt in recent years. So from that perspective it has been a dream come true as I explained to a good friend Andy McDowell who came to visit me in hospital.

I have spent the weeks since surgery being incredibly grateful to all who have made it possible for me to be feeling so well. From everyone on the DBS team, the Neurology unit at the hospital and the nurses who looked after me post surgery, I was treated with such empathy, kindness and skill and care. We are lucky in New Zealand. Our public health system may not be perfect and meet everyone’s needs all of the time. But we have world class people in terms of clinical expertise and they are better than world-class in patient care, because you aren’t just a number, you are a human being.

Friends and family have been great and my long suffering wife has been amazing. Lynn has put up with so much and to see me get better and then worse after each treatment we tried only added to the misery. At least this time it should be many years before things get worse again. For her support, love, understanding and patience I have no words to express my thanks. All I know is I am lucky to have such a wonderful woman in my corner and my love and respect for her only grows each and every day.LynnandAJ

 

Comments
13 Responses to “I got the power”
  1. Philip says:

    hi would love to discuss more about the adjustment phase of the device as I have just had mine switched on. DBS was 5th September 2014 and switched on 23rd October 2014. finding that I have a feeling of being overdosed at the moment!

  2. julie oh says:

    hi there ….firstly congrats on the DBS…good to see a fellow Parky happy and sympton free..i recently flew from Wellington to Auckland to meet the DBS team but they decided i should try apomorphine 1st ..i notice you have had apo …i am in the throws of making my appt with my Neuro here in WGTN to get this started….i was wondering if i can get your veiws on apomorphine…

  3. Sue says:

    So interesting to read your extraordinary and frank account, Andrew. You’ve handled it all with dignity and courage and so has Lynn. Noah and Aila are both so cute and lovely, so it says so much for the both of you that they have been so little affected by all the stress. We admire you both so much.

  4. Kelly are you still having problems? Aj

  5. Kelly are you still having problems? Aj

  6. Kelly are you still having problems? Aj

  7. Kelly Hobbs Kelly Hobbs says:

    I can’t get the link to work – anyone else having this problem ?

  8. Kelly Hobbs Kelly Hobbs says:

    I can’t get the link to work – anyone else having this problem ?

  9. Kelly Hobbs Kelly Hobbs says:

    I can’t get the link to work – anyone else having this problem ?

  10. Jo says:

    Great AJ! Thanks so much for sharing. It is SO good to see how much better you are doing! Hope you get many more shaky free years with your lovely family!

  11. Jacqui Jago says:

    AJ and Lynn, it is fabulous to read this great account and hear how well you are doing. What an incredible journey of pain, highs and lows and the strength of you both is incredible. Sending you all our love and best wishes, Jacqui and family.

  12. Jody says:

    Amazing AJ – thanks for sharing your journey with us – you and Lynn are an inspiration – what a team! Wishing you all the best for many many more years.

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