It’s been a long time since I’ve written anything as the last 2 months have been tied up with preparations for my surgery. I’m happy to tell you that the surgery went well; and, on last Thursday, the neurologist turned on my stimulator. Wow, what an experience. I was told to hold my medications Wednesday afternoon and Thursday. I did as instructed and was miserable.
Thursday, Renee had to put me in a wheelchair and roll me into the office. My Parkinson’s was in full bloom, and I couldn’t walk. The neurologist then turned on my DBS and I was able to stand and walk better than I have walked in years. It was truly miraculous, and I want to thank everyone for their prayers.
We’ve reduced my meds and I continue to do well. I still have Parkinson’s but my motor skills are much improved. I’ve only frozen twice since turning on the DBS and only napped 3 times yesterday. At this point, I’ll see my neurologist every 2-3 weeks to fine tune the stimulator. Like all interventions, the DBS can cause side effects and one of the more bothersome side effects are dyskinesias (awkward automatic body movements). Last night I went on an eating binge which hopefully is not related to my DBS. I’m already overweight and have to slim down.
The lessons I want you to learn from my experience are the following. My surgeon and neurologist warned me, on multiple occasions, stating that DBS was indicated for tremor, NOT GAIT DISTURBANCES. At the same time, they gave me their warning (informed consent): they informed me that if the gait disturbance improved with medication, it should improve with DBS. Giving “informed consent” is every physician’s obligation, even when it scares a patient out of doing a necessary procedure. Having a trusted family physician is critical when you are getting mixed messages from your specialists. I understood the reasons behind the mixed messages and made the right choice.
The second lesson is that being scared of a medical procedure is both understandable and appropriate. This surgery was scary! I was awake throughout the entire procedure and it was intense. Had I not had the surgery due to fear, I would have spent my final years in that wheelchair. While I still have a progressive neurologic disease, my future is brighter. I’ve been jealous of people who can walk unencumbered by illness. Hopefully, we can balance my medications and my DBS so that I can walk and return to Rock Steady.
So pleased and comforted by your reaction to surgery !!!!!
Thinking of you and Renee!
A couple lived near the ocean and used to walk the beach a lot. One summer they noticed a girl who was at the beach almost every day. She wasn’t unusual, nor was the travel bag she carried, except for one thing; she would approach people who were sitting on the beach, glance around and then speak to them.
Generally, the people would respond negatively and she would wander off. But occasionally someone would nod and there would be a quick exchange of money and something that she carried in her bag.
The couple assumed that she was selling drugs and debated calling the cops, but since they didn’t know for sure, they decided to just continue watching her.
After a couple of weeks the wife said, ‘Honey, have you ever noticed that she only goes up to people with boom boxes and other electronic devices?’ He hadn’t and said so.
Then she said, ‘Tomorrow I want you to get a towel and our big radio and go lie out on the beach. Then we can find out what she’s really doing.’
Well, the plan went off without a hitch and the wife was almost hopping up and down with anticipation when she saw the girl talk to her husband and then leave.
The man then walked up the beach and met his wife at the road. “Well, is she selling drugs?’ she asked excitedly. ‘No, she’s not,’ he said, enjoying this probably more than he should have.
‘Well, what is it then? What does she do?” his wife fairly shrieked.
The man grinned and said, ‘She’s a battery salesperson.’
‘Batteries?’ cried the wife.
‘Yes!’ he replied.
‘She Sells “C Cells” down by the Seashore!’
Dr S,
Was thinking about you yesterday. Glad to see u posting again!
Congrats on the results of DBS.
Glad you have a good Dr to go to, it is so hard to find one here. I guess I should be happy I had found two that were good. Have not found another good one since mine decided to go into supervisory job. Ray and I are still on the search it sucks!
Continue good luck to you on your health venture will keep prayers going to you.
M
J
So happy things went as well as they did. Stay safe.
What great news and so very happy for you and Renee!
Thank you for sharing the good, the bad and the ugly.
We were with you all the way.now I can follow you.
Loveyou, your brother
I can follow. You.
I’ve been waiting to hear the outcome of your surgery. Honestly it has, as you mentioned, been a long time. I can’t begin to tell you how relieved Linda and I are, that you are on the mend. Thank God. We stand by waiting for more good news. Get well Doc & we’ll be talking again soon.
So very happy to hear this!
I am so happy for you!! Rose has kept me updated on things . Thank the Lord and have a Happy Easter. Waiting to see you do a jig the next time I come down!!
Hoping you continue to see improvement.
So glad to hear how well things went medically, as well as your positive attitude and appreciation that followed your fears. Keep well Judy
Thanks for sharing the update, Stewart.
Steve and I have been thinking of you and hoping that all went well with the surgery. It sounds like you are on the way to living a more fulfilling life.
Positive thoughts and prayers for a continuation of good news.
God Bless You, Doc. Hope the stimulator is as successful as the one I had put in (on your recommendation) for my Tarlov Cyst issues. All I can say is, “ya should have done it sooner” LOL (hindsight always has the answer).
P.S. Hope the Carolinas are treating you well, Kim & I moved to East Tennessee a year ago. If you’re ever near the Smoky Mountains, let us know, maybe we can meet for lunch or something. (If physical conditions allow)