Parkinson's Disease Tulip


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Old 09-20-2017, 07:20 AM #1
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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.
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Born in 1969, diagnosed PD in 2007, first symptoms 2004. DBS in July 2016.
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Old 09-20-2017, 07:42 AM #2
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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
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Old 09-20-2017, 08:29 AM #3
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Originally Posted by jeffreyn View Post
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.
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Old 09-20-2017, 09:38 AM #4
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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.
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Old 09-21-2017, 02:20 AM #5
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Originally Posted by soccertese View Post
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.
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Old 09-21-2017, 11:11 AM #6
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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!
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Old 09-21-2017, 04:14 PM #7
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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.
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Old 10-04-2017, 11:14 AM #8
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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?

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Originally Posted by sim00 View Post
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.
Trixiedee
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Old 10-17-2017, 06:20 AM #9
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Quote:
Originally Posted by sim00 View Post
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.

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
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Old 01-08-2018, 04:24 AM #10
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Quote:
Originally Posted by trixiedee View Post
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
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.
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