i am now celebrating six months since my DBS surgery. This surgery for me has truly been a gift of life renewed. If you are thinking about exploring this option and would like to hear more about it or have specific fears or questions, I would love to help. I, too, was afraid of having the surgery, but I finally reached that point where I was tired of living in my blue chair watching the rest of the world go by and chasing meds that were not working for me. Now I golf, hike, ride my bike, and have cut my meds down to a mere fraction of what I was taking. Life is good!
Annie
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annmariebaird
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My DBS surgery is now approaching the one year anniversary. I am doing so well - as I look back on my life for the past ten years, it is clear to me that I can do things now that I was not able to do ten years ago. I do work hard keeping physically fit and eating right, and am able to ride my bicycle seven miles, hike, work out at the Y, and in general just about anything I want. I take 6 extended release sinemet during the day (about every 3 hours) and am sleeping without the aid of ambien. This surgery was a gift and I would encourage everyone to look into having it done. People tell me every day that they cannot believe the change. Annie
I was diagnosed in 2002 - so put up with it for 17 years before I had the surgery. I was doing really well until about six years ago and then it was a steady job of "chasing the meds". I was afraid of the DBS and then decided I was afraid of being found mummified in my blue chair. Once i made the decision to go with it I never looked back! Annie
I am a 71 woman. My parkinsons is/was of the variety that leaves you frozen.. no tremors to speak of. My meds simply began to run my life.. needed more and more often. The last year before my surgery i withdrew from social functions because the tether to my drugs was so short. I spent LOTS of time in my blue chair watching the world go by outside my window. I finally decided that life was way too short not to try to improve it. I did my due diligence, decided that I was willing to put my trust in the medical team and go for it. I have never once been sorry. My life now is what it was seven years ago - hardly any meds and energy that astounds me. And so I ask folks how much time they spend in their "blue chair" and if they are tired of chasing meds. It isn't a cake walk, but it is a walk to the "cake" of a good life! If I can answer any other questions, please don't hesitate to ask. i have been given the gift of a new life and I am eager to share it!
I already said I admire you,I wish you a better future and many good year living.Even your age you should rejoice every day of your life.Stay on the track.
You have to qualify wherever you go - but it would not be as successful if they did not. You are a good age - get yourself as healthy as you can and go for it! If I can help you along the way, please let me know! Be strong and focused and keep me posted! Annie
Hi this is so very encouraging. Had my DBS op 3 weeks ago and await turn on next month. Thanks go to Mr Dunn and his team at Glasgow NHS Queen Elizabeth hospital. The NHS which celebrates 70th anniversary today. Very lucky to get this level of care I know.
Will hopefully be able to match Ann Marie’s experience.
I was quite tired when I had my turn on, so I didn't really see the results, but my family said it was amazing. They said it was like watching a butterfly crawl out of its cocoon. I wish you good results! I can tell you that the results I obtained were because I was very focused and disciplined throughout. I ate only those foods that were good for me, certainly nothing that contained refined sugar. Keep me posted!! Annie
Hi Annie. I am very pleased for you. Unfortunately, I know many people who have had DBS and none of them have experienced your results, but I don't know how old you are. I have met 3 people, who have had DBS and came out of it a lot worse off. Two of them were no longer able to speak properly and the other was no longer able to see properly. I talk to Pd patients all over the world and have met thousands of Pd patients over the past 20 years.
I chose to go the exercise route, which has helped me to overcome most of my movement symptoms and to come off all Pd medication and to have lived a NORMAL LIFE since 2002. What did I do to achieve this? Fast Walking; Managing my Stress Levels; taking a medication that Does affect the Progression of Pd; Adopting a Positive Attitude; Mental Exercises such as Su Doku Puzzles, Cryptic Crossword Puzzles and learning to speak a Foreign Language; last and not least, Learning How to Consciously Control my Movements.
None of us is the same. We all have different attitudes and different approaches to exercise. Many of us, like me, are not exercise freaks and do not fancy doing strenuous exercise. My late wife persuaded me to take up the Fast Walking and because of her I have lived since 2002, medication-free. I now continue to walk 7 kilometres every second day, in order to stay well.
If you want to learn more about what I did then look at my PROFILE or got t my website - reverseparkinsons.net and contact me. I will tell you everything and send you all the information, FREE OF CHARGE!
I have read your book and have the utmost respect for what you do for folks!
For me, exercise was not an option. My symptoms were freezing, so the risk for injury during exercise was huge. It is so true that everyone's parkinsons is so different. I am 71 years old, and am in complete control of what medications I take and how I take them. I eat very healthy - very little animal protein and certainly no refined sugars (except my addiction to chocolate ice cream cones once a week). DBS has brought me back into the living and put me back as I was seven years ago. They have improved procedures immensely from when it was first introduced. Keep up your good work John!
Well done! I am pleased fr you. Have you tried to learn how to use your conscious brain to control your walking? If not, then contact me via my website.
Thanks Annie! So glad to hear how well you're doing. I admit the fear of the surgery. It also seems that my local dbs hospitals are taking twice the time in surgery. How much have your meds dropped now? How long does your med last compared to before?
My meds were: 1 25/100 reg sinemet twelve to sixteen times a day plus
1 50/100 extended release sinemet eight times a day plus
the Nupro patch
my meds now: 1 25/100 extended release sinemet five times a day plus
tiny nibbles of the 25/100 sinemet five times a day (more than that is
too much
Pretty impressive! And yes - as this surgery has improved, more are doing it. More reason to figure it out one way or the other! What color is your blue chair?
Re your current meds, do you still experience ‘off’ times? Does eating high protein food still interfere with the effectiveness of your medication in the same way as before DBS? How do you feel when you’ve taken too much Sinemet?
Thank you for sharing such an uplifting DBS success story.
My off times are only because I get busy and forget my meds. They go away quickly when I take my meds. I only eat salmon and a bit of organic ground beef when I make meatballs with spaghetti. I just don't get hungry for other meats. I eat small portions when I do eat salmon. I get dyskinesia when I take too much sinemet. Hope this helps!
It was lovely to read your post. You must have been very restricted. Very uncomfortable and fed up .
I have been offered DBS. Very apprehensive .
I am on not much more than your new regimen :
Madopar 125 x 6-8 a day. I panic if get up to 8. Plus 2 Madopar ER pm when I go to bed.
I am sleeping until 5/6 am. I don’t have any problems falling asleep.
My problem is in the morning with mobility. It takes me a good hour and a half to be fully mobile. I push myself then and it is dangerous I know but I’m determined and hang on hard to my walking frame. Lifting my feet is the main problem. Having a knee replacement hasn’t helped either. Big problem is my ‘hang up about keeping my home perfect’.
I can’t sit around while it’s not up to my expectations.
I have put myself on a regimine of B tablets plus Magnesium
I don’t get foot Dystonia or cramping of the calves anymore. Some Dyskenesia but it doesn’t bother me as I was put on Symmetrel x 2 daily.
Now 71 and diagnosed 13 years ago. Have been on Madopar only, since then.
Did finish 7 months of Exenatide Injection weekly, 2 months ago. I believe, now, it has helped me. I plan to go back to the injection after next Neurologist visit in August.....I hope he agrees.
Admittedly I can have some ‘off’ time . That’s when I catch up on emails
puzzles, or a sleep even.
I am at the crossroads I know but think I’ll stick to what I’m doing and forget about DBS. I’m managing. I hope I always will.
I tried to look ahead 5 years to see if what I was doing would be a good or bad thing. DBS gave me back 7 years of my life and promises to keep on giving back. Meds did not. It was as simple as that! Annie
I am sceptical because I personally know of 2 who had it with the first version but one has Dementia diagnosed now. The other is still on meds.
Yearly Battery checks don’t appeal either. It failed in one and the poor bloke had to get to hospital where they couldn’t find out what was happening. In the end they learned what was wrong but quite didtressing for him and family .
I may regret but feel the regimine I’m on will sustain until something other than DBS is available.
Hoping you continue to enjoy your new found exuberance for life.
I’m a retired PT that has the non tremor form, PIGD for 16 years. I also think that exercise is essential for everyone all the time with or without PD period. That said, I think I would be in a facility today if I had not had DBS almost 4years ago.
Ann, you are an excellent spokesperson and are to be admired.
How true... although there will be a time for all of us when the will to live may be replaced by the will to die. And I hope to know that and appreciate it as a necessary natural life experience... the end.
Annie, I'm trying to get up the nerve to do DBS however no one in my state (WI) uses the newer Boston Scientific DBS. Is that the kind you got? I feel like I don't want to wait until I am totally nonfunctional before I do it. Yet I worry about being one of the unlucky ones who gets a stroke or speech problems, etc. I don't have any ON TIME. I either have tremor w/ leg pain or dyskinesia w/ leg pain. I take C/L 25/100 every two hours for the last 6 mos. Would love to hear from you and any others who have advice or insight. Thanks! Karen
My device was Medtronic. It was highly recommended by my neuro and it is working for me. Why are you thinking the Boston is better? Is it a new technique? I personally would not feel comfortable using what hasn't been out there for a while.. But I am interested to hear about it. As with any surgery the risk of stroke is there but quite small. The testing I had to go through was pretty thorough a far as stroke tendency. Annie
I. Am living in my RV since I sold our home. I am finding I can’t remember a lot of past happenings. I also am finding I have head tremor now. Did you have these problems?
Have you talked to your neuro about this? You are still in the healing phase, so I was a bit "daffy" from time to time also. Remember, this was BRAIN surgery my friend. Mine came back - but you need to let him/her know this is occurring as well as the tremor. With regard to the head tremors, it might be too much juice from your battery. But they should address this issue. I don't remember head tremors, but I am out nine months from surgery and could have forgotten.
No we are still looking for a house. We are fishing and are 4 hrs away. I have some scarey feelings about this memory loss. It seems my head tremor is worse too. I also have som big time anxiety issues-help!
This is difficult to answer. Have you always had the memory loss since the surgery or since your turn on? You really need to get on the phone if nothing else and call your neuro. It could be a small thing, or something he needs to address immediately - fishing or no fishing.. The tremor may be as simple as an adjustment. I really have no definitive answers Lynne. You need to make a phone call my friend. Keep me posted.
Annie, Now that I have an outpatient's appointment in October I am back looking at the for/against dbs. Your posts are heart warming and welcome. I am in my fourth week on the high dose thiamine-B1 protocol supported by Dr. Costantini and many others on this wonderful site and there is a notable improvement in my PD condition. I expect this process to continue to be worthwhile, and fortunate to have the dbs option available too.
I expect that the DBS outpatient will be followed by in inpatient assessment before any surgery. You look to have prepared well for the assessment and surgery. I am not so disciplined and my ON times are 2-2.5 hours per session. Keep up the great work and support for those of us in process.
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