[Jordana]

Hi
I am a 56 yr old female and I have had PD for 5 1/2 yrs.  I am seriously considering DBS because I can’t get regulated on the Levodopa. I unpredictably fluctuate between deep “off” periods and “on” but with dyskinesia that I find almost as debilitating as when I am off.  I have the Inbrijia inhaled levodopa but it doesn’t always help and it is rather unpleasant to inhale a powder.

My questions are: 1- I am told by my doctors that DBS will help stabilize me so I am not always on this roller coaster but it will only get you to a point where you are when you’re “on ” from the medicine.  I am wondering if any of you actually felt better after DBS than you did during “on” times before.  It is hard for me to tell how well the Levodopa is working because of how the dyskinesia makes me feel.  My symptoms are mainly stiffness and a total disconnect between my brain and my body.  I think of it as my brain speaking English but my body speaking a tribal click language and so my legs and arms are just not doing what my mind is telling them to do.   I dont have severe tremors which I know is specifically helped by DBS.

My doctor performs the surgery in 3 parts.   First the left side implant of the leads. Then approx 1 month later the right side is done.  Then two weeks later, the battery is implanted. (Luckily the two brain surgeries are done with you asleep for all but 10 mins when  they wake you to test the placement of the leads and then they put you back under.)    I live alone but I have family that can stay with me or I could go to for the recovery but will I need assistance to recover from the surgery?   Did any of you recover just fine alone with maybe a  friend or two nearby to check in on you?  And if you needed assistance, what type of things could you not do?  Could you dress yourself? Bathe? Go to the bathroom? I am trying to decide if my dad should stay with me to make me meals or do I want someone that I am more comfortable with helping me dress, etc. I know about  the bandage changes and cleaning the surgery site, but I know two nurses that could help me with that.

Sorry so long but thank you for your thoughts and for sharing your experiences.