Today is Saturday April 16, 2011. I have decided to have DBS. Scheduled for May 10.. I have been absent from PLM for about a year. While I make no promises... I am going to try to give a narrative of my experience.
I hope it helps others who are making a decision about DBS. April 14,2012 just spent 2 hrs updating & lost it
Fifty five and counting, living a healthy lifestyle - vegan, don't smoke or drink. April 2006 I first noticed a very slight shaking in my right hand. Didn't think much of it at the time. In the next year shaking became noticeable and those around me began to ask me about it
A person of faith. I have a new best friend "Parkie", he goes everywhere I go. He has shared some 20+ symptoms. (He is so good to share without being asked!)
Back in 2004 I was praying for contentment in whatever came my way during my devotions. Little did I know what was coming my way.
In April 2005 I first noticed a small twitch in my right forefinger. By September my sister noticed it, in October I burned myself (face and hands second and third degree burns) at the hospital I was shaking so violently that I scared my family. As soon as the burns healed enough I was sent to a neurologist for the shaking.
At my first visit the neurologist said be thankful "you don't have Parkinson's... you have Essential Tremor". I didn't have a clue what Parkinson's was. I thought it was an old man's disease that caused shaking. Little did I know! After 18 months, three different prescriptions and continually worsening shaking, the neurologist referred me to DR. Jancovich in Houston to consider DBS.
August 20, 2008 after 1.5 hrs evaluation Dr. J got real close to my face and said "you have Parkinson's maybe a little Essential Tremor but for sure Parkinson's" and he started me on Carbodopa-Levadopa. I still did not know what Parkinson's was.
We (my wife and I) went home and started learning about Parkinson's. It is a five hour drive home. I have a daughter that worked at a Health Food store and by time we were home they had printed out about 80 pages of promising natural treatments. I tried many of them starting over the next few days. Family & friends started giving me books and articles with hope and promise. One such book was the "better brain book" by David Perlmutter. In it he gives numerous ideas of how to improve the brain along with his promising IV Glutathione treatment. Well I went for it hook line and sinker. We flew to Florida had a very cursory examination and very expensive treatments (three in his office in Florida and then a month at home). A complete waste of thousands of dollars. Shame on me!!!
When it became obvious that I had been suckered, by a modern day snake oil salesman, I started looking for the best Parkinson's Practice in the DFW area. The result was a 5 month wait to see Dr. Dewey of UT Southwestern Medical Center in Dallas. On my first visit after explaining my history Dr. Dewey gave me a very through examination and told me that I have Tremor Predominate Parkinson's Disease. He then said I has such a textbook case he asked if he could video me for his students. That done we started talking treatment options. He wanted to start me out on Sinemet. (I objected that I had tried it without success to which he said "you have not tried it my way I would like you to try it the way I prescribe it first." Which I did and lo and behold his way is different an it works.) We also discussed DBS and my hesitations. My wife was ready to proceed right then. Dr Dewey said he would like to treat me with medications to make sure I was a good candidate first.
At the end of 2010 I finally completed all of the prerequisites (prescription and mental evaluations) and I was referred to Dr. Whitworth. UT's head surgeon for the DBS procedure. We scheduled the Surgeries for May 10 and 17. May 10 they place the implants.
May 17 the impulse generator is implanted and hooked up. During all the discussions prior to surgery I am told the "worst" part is when the guidance halo is bolted in place. Because there are no nerve endings in the brain. Well the halo was no major pain so I thought this is nooooo problem.
HOW wrong can one be??? What no one mentioned was HOW MUCH it HURT to run the wires to the chest and place the generator!!! OUCH!!! For the next 6 says I knew the exact moment I could take another pill and I DID!
UTSW MED CENTER being a research and teaching facility have come to the conclusion that it is better to wait 1 month from the placement to start of programming. So the surgeons nurse forgot to put me on the schedule for programming. It is late August when I finally get in for programming. That is when I find out that the leads for my left half of my body are not in the correct place. I find out because all the programming possibilities cause great pain. Well what to do? Program the right side and leave the left turned off (I am not yet shaking on the left side).
So at my 6 month follow up I have started shaking a little on the left side. I get the right side turned up very little. Then we try multiple settings on the left side. It is on very low but enough to control shaking about 90% of the time. For about a month it felt like I had bumped my funny bone. Both of my elbows ache when I lift things. That is a trade off I can accept to control the shaking. Unfortunately the DBS has not helped any with swallowing. Just since August of 2012 I have started choking on food and drinks. And my speech has gotten much worse. But if you observe me out in public you wouldn't notice my shaking any more!
Today is January 12, 2013. Went to Neuro this past Wednesday. Made minor adjustments on DBS. Is pushing for me to go back on Sinemet "it may help your voice". It seems ;ile they really want me on some medication as if they get a commission, or they just do not know how to deal with a patient who is off all meds. Got after me for nont doing LSVT and physical exercise. To try and be a "good patient" I have scheduled LSVT an started riding my bicycle daily. Have NOT done Sinemet yet. I have started eating 3 cups of Kale, Spinach and bright color foods to help the Mitchondria, I have heard that some do better after 3 months.
Still have slurred speech, more so when I am tired. Shuffel my feet when walking unless I concentrate on what I am doing. It is much more difficult getting out of a chair. Yes,
Ol' Parkie doesn't let me forget him at all!
Saturday Feb 16, 2013, Yesterday I completed the LSVT program! It really does help and I must keep up the practice to maintain the benefit. The LSVT has had the side benefit of helping with swallowing issues also.
I also started Sinamet again January 14 and I plan to quit it again as soon as I see the Doctor in March. I am only taking it to prove a point that it does not help me any more.