Sunday, March 3, 2013

Well, well.  That was harder than I thought it would be.  Turning the implant on and adjusting it was a  very interesting and tiring experience.  I had to be off my meds for one thing, and that is pure torture for me now.  I was so stiff and in so much pain!  They adjusted one side at a time, which meant that I was still in pain on the other side; very distracting.  They turned the voltage up slowly and waited for side effects to manifest, which, in my case meant dizziness.  For some people, it's tingling in the extremities, for others, one or two muscles start pulling on their own.  Others lose their powers of speech.  With me, if the voltage got too high, the room started spinning, and I started to feel disconnected from reality.  I then had to communicate this to the nurse (a very nice and patient young man named Carlos, with an engineer's understanding of how the implant was supposed to work and lots of experience in "tuning" people up).

I have been sick these last 4 days.  I mean sick to my stomach.  I think it's the Requip.  After all, I did stop taking it suddenly, then suddenly started again.  But for whatever the reason, I have been fighting nausea.  That is never fun.  So far this morning, it seems o.k. though.  Maybe I'm over it, and I can actually see how the implant is doing.  It's only just past 4:00 though, so we'll see when it's really morning....  Crossing my fingers...


Norma Cairns said...

Marian,I'm glad that you are "turned on" now. For me it was one of the worst experiences that I've had. I suffered with extreme dyskinesia after the appointment and had to have the voltage turned down. Saying this I'd do it over again to reap the benefits. I've been going to the DBS clinic every week for the past six weeks to be assessed and my pacemaker programmed. I'm going very slowing in adjusting the pacemaker voltage, allowing myself to become comfortable before raising the voltage. My husband bought me a little turtle on a chain to remind me that slow and steady wins the race. I had been raising the voltage too quickly in my excitement to get off medication and had to back off on the voltage when I had some unpleasant side effects. So.... My best advice to you is to take it slowly. norma

Marian said...

Hi Norma,
THANKS! This is good advice. We are a tad disappointed; i had pictured myself doing hand springs down the hospital hallway (though i never could before). I guess slow and steady really does win the race.

Anonymous said...

thanks for sharing your experience in "tuning up"... and i hope the nausea passes! thinking of you!
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Elisa said...

Keep your chin up! I hope to hear more positive news about your progress soon. But whichever way it goes, I want to hear all about it because I have PD too.

nelson said...

i like the turtle reference, thank you norma. i recently read about how dr terry wahl beat back her ms with a hunter/gatherer diet, basically a heap of vegetables and fruit daily, plus some organic meat, little more. thought "maybe that will work for my pd". nothing wrong in trying. but usually my wild initial enthusiasm gives way to disappointment and depression. so yes, slow and steady. and, if i need to go into my shell at times, as we turtles will, its ok. i'll emerge again. god bless us all who breathe and walk this earth (however slowly and unsteadily )!

Marlon said...

I know I'm kinda late for this post but I really hope that you are doing well. I admire you for being a strong woman, although you've had a hard time during your hospital stay, at least you still managed to get through it.

Patient-Online said...

Marian, I do really understand the struggle you describe. I had my DBS surgery last July and though I have had improvements as a result, it does not solve all issues, as you well know. There are great benefits and the programming adjustments will be helpful along the way for both of us. Please know that you are understood and that your sharing of your honest experiences is very helpful and meaningful for others. I am here if you ever need to compare notes. Take care, Dan

Marian said...

Dan: thank you so much for the encouragement. I would like to compare notes as the adventure continues.

Marlon: Thanks for your warm and kind words. For the first time in my life, I actually feel like a strong woman! I guess, like the Cowardly Lion, I was brave all along and didn't know it.

Nelson: I love the turtle/tortoise reference too. I am trying to race when I need to walk slowly and just keep on keeping on. Walk on, my fellow tortoise!

Kaitlyn: Thanks for the smile. You always manage to give me one when I need it.

Elisa: I will keep on sharing the good and the bad. Thank goodness, there is a lot more good than bad; I am so grateful for that, and for the folks like you who remind me that I'm not alone on this journey. Thanks!

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.