A new life is possible
 

Hi everybody.
I'm back here to share my amazing experience with you, after more than 1 year from my DBS surgery.
I would like to embrace all of you and tell you that after DBS surgery, in July 2016, today (September 2017) I am not taking any medicine and I feel really good.
Today I'm 48, I have Parkinson's disease since I was 36 years old. I took about 1g of Levodopa, until the day of DBS, and today I take nothing.
From January 2017 I go to the gym every day, for about 2 hours, and from 84 kg I'm slim up to 76 kg.
I love you all.

Hi Sim,

Welcome back! It's great to hear that you are doing so well.

Two hours at the gym every day is quite a lot. What kind of exercises do you do during that time?

Jeff

Hi Jeff, in the gym I do almost everything except lifting heavy weights, just for my fear of accidentally hurting the device in my chest.
I do Treadmill, cyclette, abs, and sanarium, sauna, jacuzzi, etc.

great news sim00. i'm jealous. just curious, what did it cost you? i cancelled my DBS, tough decision after 14 years since diagnosis, due to obamacare uncertainty. my insurance approved it but there was no guarantee i'd have insurance that i could afford if any major problems cropped up before i qualified for medicare in 2.5 years. just a terrible system here.

Hi Soccertese, here in Italy the public health system is free for everyone. I also have a private health insurance, but I didn't need it. I don't know how much cost DBS surgery, but in any case I think not less than 30,000€ ($35,000=$23,000 for Medtronic DBS device + $12,000 for surgeon + staff doctor). If you need more details please contact me in pvt.

I'm very sorry to hear that you have not been able to do surgery for DBS because of a law problem. I wish all those who suffered like me because of Parkinson's disease could have another chance to live a "normal" life. Since I did DBS surgery I didn't any absence of work, I drive the car alone and I feel safe, I leave my home at 7.00 am to accompany my children at school and return in the evening at 8.00 pm after being in the gym or other things.

Best wishes my friends.

Hi Sim
Thank you so much for sharing this information. It's wonderful to hear! I'm so glad you are doing so well. Your story is very inspiring. I am the same age as you and diagnosed at 38, although I had symptoms a couple years before - so we are on a similar path. I am still doing ok - although I have met with the DBS Dr's and had a long consultation. It's definitely in my future. I know everyone reacts differently, but it's wonderful to hear your story! Keep up the great work in the gym!

Thank you very much dear Anagirl, you are very kind, but also very wise.
In fact I was also willing to try anything, and I really tried everything but not dbs surgery.
I was very frightened at this idea, I thought I could not succeed, but when you have no other option, an unexpected force arrives and you say okay, well I do it because afterwards I'll be fine as I didn't remember anymore.
The truth is that currently, dbs surgery is the only viable exit path. For those who are not candidates, for example age ..., the other alternative, though more laborious, remains the duodopa with PEG.

Thank you for such a positive post. Do you have tremor dominant PD or rigidity? Does the DBS help with fatigue, brain fog, slowness, rigidity?

Trixiedee

Sim - My story isn't quite as incredible, but close! 59 years old,
previously taking 14 capsules daily, now 5. and my heroes, Dr.
Griffith and Dr. Kaplan of Kansas City, have left me with NO TREMOR.

David

Hi Trixiedee, sorry for the late reply, but this is due to the fact, that since I underwent DBS surgery, I am always very busy all day. I am literally reborn. My PD is bradykinetic-rigid type, but since the day of DBS surgery, I forgot all the symptoms, and more importantly, I forgot all the medicines. About 18 months have passed today. I go to the gym regularly every day, after leaving work. Before DBS surgery I had an average of 5 days per month of absences from work, after DBS surgery, I was at home 3 days for a common flu, in 18 months.

Best wishes.:winky:

Peg, Steve?
 

How many others on this forum have experienced DBS? Steve does not post much anymore but I believe he is doing much? better. Peg posted a lot before her DBS but rarely does now.
How many DBS candidates were turned down because of PD psychosis (my wife) and how many were accepted for DBS even if they did have any degree of PDP?

thanks
 

where did you have it--what were outr promary symptoms before and is anything worse?--dave

interesting research on DBS for dementias
 

Ashleyk,
We too have psychosis and cognitive and memory issues. I very recently stumbled across a line of research using DBS for dementias including Alz and PDD. It is a very new idea, and one you might consult with your wife's neuro about. What I have found so far is that the procedure itself is safe and tolerated by patients with dementia, and that it can improve memory and some facets of QOL for some patients; however those benefits seem to wane about a year after the procedure, and from what I have read, were not that robust (and definitely not enough to transform someone who needed a caregiver into someone who could live alone). While the improvement wasn't huge, in my book, any improvement is still improvement:)

Unfortunately, I can't see our insurance company (or Medicare/Medicaid, depending on your situation) being willing to pay for DBS without a lot more research showing that the majority of patients not only improve, but improve enough to justify the risks and costs of the surgery. Just thought I would mention this. I believe the neuro heading up a lot of this research is Lozano, if you're interested.

Hello to everyone. As soon as possible, I will upload some videos to show my current state of health. Next week I will ask the neurologist for my pre-DBS videos ...

That would be great! I am having the neuropsych evaluation for DBS on 2/2. may I ask what the target of your DBS was the Internal Globus Pallidus (GPi) or the Subthalamic Nucleus (STN)? It seems STN really works best for physical symptoms and reduces amount of meds required. However, STN has a much more negative impact on speech, cognition and
mood (depression) as compared to Gpi stimulation.

Can anybody share personal experiences?

Hi, my DBS surgery was STN type. However , after 18 months, I haven't any speech or cognition or mood problem. In any case, I know that neurologists do not perform DBS surgery, if the candidate suffers from any non-motor pathology related to PD.

However, this is an interesting link: GPi vs STN deep brain stimulation for Parkinson disease: Three-year follow-up. - PubMed - NCBI

hi
i know many who have PD.Some of them have had dbsMost of them were disappointed of their outcomes.I myself would never have it as mine is the stiff guy.In my area I think it is being oversold,another sign of how our care is going.No longer professional and patient.Now we are just customers .
I have had very good results over the last 7 years to use meds at a minumn and rely more on concetration and exercise

I just spoke with a friend who is not levadopa responsive but exhibits classic idiopathic parkinsons sx....she went to an MDS at Oregon Health Sciences University (after seeing several other docs) and he is stumped- so he is recommending DBS but when she hesitated he responded with pressure saying that her doubt was not good and she should act quickly otherwise medicare might not approve her.:( I smell a rotten powerplay there. ) Now she is seeing a naturopath in Seattle that charges $200/half hour for a phone consult!!!:eek: The more they don't know....the more expensive it gets......

MD

the patch vs. DBS
 

Hi everyone,

I see my neuro on Friday and would like to be armed with at least some knowledge and information.

Recently I was at the hospital and a tech told me that her mother was put on the patch and said it was positively wonderful and she no longer has highs and lows like she use to.

Now I'm reading about DBS and how that is a viable alternative.

What is the success rate of DBS? Is it typical to be free of all meds afterwards?

I, too, am relatively young ... diagnosed 14 years ago at the age of 44, currently 57.

What are the pros and cons of each? Any answers before Friday are much appreciated.

Thanks ...

Hello everyone, a brief update of my health conditions: after 28 months from DBS, I feel very good, I don't take levodopa or equivalent, I work a lot, I do sports regularly, I have a regular life.
Thanks DBS.

Updating
 

Hi everybody, after 3+ years from DBS surgery, I feel very well, I don't take any medicine, except Xadago, I work 8+ hours a day, 5 on 7 days a week, in other words: a regular life ...

so how are you now after 3 years?

Update
 

hi everyone,
last month the surgeons replaced my neurostimulator (Medtronic Activa PC) after about 5 years (the batteries were almost empty). Now I have a rechargeable neurostimulator (Medtronic Activa RC) implanted. I have to recharge it about every 10 days, but its duration is 15 years.