CW’s DBS SURGERY - Why DBS?

These Blogs about CW's DBS SURGERY are from my personal notes and diary, written as CW (my husband) went through his DBS (Deep Brain Stimulation) procedure.  Please note that I am not by any means a medical expert or professional. I’m just providing this information with the hope that our own experience; what we have learned through trial and error; and what we have learned from reading and research, will help others going through or considering DBS surgery.  I think that "playing it forward" (sharing) is the best way to explain why I'm doing this.

Note:  As of July 17, 2010 CW has had his three DBS surgeries, and both of his pacemakers have been turned on and have had their first tuning.  CW is still recovering from the surgeries, and is doing well.  – Dottie –

Why DBS? - From Notes & Diary Entry May 18, 2010

I just finished talking with a friend on the phone about CW's surgery coming up, and she asked me two questions: "Why DBS?" and "Why now?"

Several other people have asked us how CW knew when he was ready for DBS.

CW’s Parkinson’s has progressed to the point where he has to take more and more medication so that his muscles don’t freeze up. Freezing of body movements is what Parkinson’s disease does. It is a Catch 22 – if you don’t take medication, you freeze – if you do take the medication you may have dyskinesia. Dyskinesia is not part of the Parkinson’s disease itself; it occurs because of medication taken for Parkinson’s. Too much medication will eventually cause increased dyskinesia to the point where the quality of life is diminished.

Dyskinesia is defined as "...having difficulty in the ability to control or perform voluntary movements; having lack of coordination or distortion in movements". 

Why CW can’t control “how much is too much” when taking his PD medication? The answer is that there is a fine line of what causes too much medication, and unfortunately for some patients you can’t determine where that line is – also the line keeps changing minute by minute because Parkinson’s keeps progressing minute by minute.

To see CW when he has his dyskinesia, his arms are flying around; his speech is extremely fast to the point that it is difficult to understand him; he has difficulty walking; etc. Every thing is exaggerated all because he can’t control his movements.

One other reason for having DBS surgery is another side effect resulting from having so much dyskinesia -- CW has lost a lot of weight. He is 6' 1" and now weighs 123 lbs. This is because his dyskinesia burns up so many calories when he moves around so much all the time. He eats constantly small meals, and desserts, etc., but his calorie intake can't match his calories being burned.

So I think the best answer I can give with respect to CW’s decision about "Why DBS?" and "Why now?", it is because the management and treatment of his Parkinson's isn’t currently working; all other avenues of treatment have been explored; and his quality of life is “severely” impacted for normal activities.

CW said that "You know it when it's time!"

To be continued…