This week I wrap up my series of columns on Parkinson’s Disease.
When I began writing my first column for Parkinson’s Awareness Month, I didn’t anticipate writing four columns. But the words kept flowing and I received numerous positive comments about each column.
Last week, I told you about my decision to have Deep Brain Stimulation surgery.
As I said last week, I had lost my quality of life mainly due to a condition called dyskinesia caused by taking too much medication for other symptoms of Parkinson’s. I was constantly tipping over or leaning. It was a struggle just sitting in a chair or even holding my head erect or steady.
And I found I had more and more “down time” when the medications didn’t work. I walked with hesitation, was falling more frequently and had to use two canes.
I was taking 39 pills a day for the various Parkinson’s conditions at the time of my surgeries. I am now down to four.
What I was not prepared for was the withdrawal from all that medication. I read an article a friend gave me comparing the withdrawal from Sinemet, the main drug used for Parkinson’s conditions, to those from cocaine. I felt confused and “foggy headed.”
Another condition I am dealing with is “burning” feet. It’s a strange sensation that tends to get worse when I sit or stand for an extended period of time. I have also experienced periodically a sensation where my feet feel very heavy.
I mentioned these conditions to Dr. Evidente at my six-month follow-up visit after surgery.
As for the confusion and “fogginess,” he said, “After all, you had brain surgery. You just have to give it time!”
On the burning and tingling sensations and “heaviness” feeling in my feet, he suspected neuropathy or restless leg syndrome and prescribed Gabapentin for me.
I did talk with another DBS patient last week, who said he experienced the same sensations six to eight months after surgery and they eventually went away. He was also prescribed Gabapentin. That was encouraging.
The heavy and tingling feet made it uncomfortable to walk, so I had stopped my daily outings to Fountain Park about a month ago. I found that was not a good thing to have done.
I started dragging my feet more and once again developed a hesitation when I took a step, something I hadn’t experienced since I stopped using a cane about four months after surgery.
There were other factors of why I stopped my daily walks. We went to New Jersey for five days at the end of March to celebrate grandson Brandon’s fourth birthday on April 1. It was 80 degrees the week before our trip and the week after we were there. But while we were there we had two overcast days with rain and highs in the low 40s.
The other days were in the 50s and windy. And you know how I don’t like to be cold. Then I came back home with a cold. Ever since I had pneumonia, a cold really knocks me down.
Well, to make a long story short as they say, I started walking with my friend, Frank, last week at Target. I’m already walking better and I’m through with the excuses.
Don’t get me wrong, for all of these inconveniences I have experienced, the benefits of DBS surgery far outweigh the negatives.
Diane says I laugh more and have more expression in my face. The tremors and dyskinesia are gone or very minor. And I am eating more protein, which makes me happy. (Protein cancels out the Parkinson’s medication, Sinemet.)
Another positive is that I have been accepted in the Lee Silverman Voice Therapy Training program at Mayo Clinic Hospital. I started yesterday. It is an hour session four days a week for four consecutive weeks and is specifically designed for Parkinson’s speech problems.
When I have completed the sessions, you should be able to hear me better.
That’s a good thing since many of my Boomer friends have hearing problems. Maybe it was listening to Jimi Hendrix, the Stones and Iron Butterfly all those years when we were young.
