Hi need ur input on this.... my family thinks I shud consider DBS and hopefully it will help me get a better quality of life...
Personally I am petrified and am not sure if I shud do it.... I was diagnosed in 2004 when I was 36...will turn 44 at the end of this month... was on requip, withdrew from that and went thru hell, right now on carbidopa/levodopa, comtan, gabapentin n cymbalta
thank u
Well, I will make this story short for you. I am 48 yrs old, and I had the DBS surgery Oct 11th 2011 and Oct 18th. It is scary. If you dont go into to it with a positive outlook, and KNOWING without a shadow of a doubt that you WILL be better dont do it until you do. You can call me anytime I wouldlove to encourage you, be there for you and talk to you about it, I feel the is what GOD wants me to do.I was 39 when I was diagnoised, and I am loving life.
Contact details through private messaging
oh thank u for replying....I will call u as soon as i calm down enuf:))) I need to get thru my mental block....thank u so much will def get in touch with u
Wow Cathy that is great that you are willing to offer your wisdom and personal insight. I am about the same age as you gals but DBS is not an option for me but if it is for someone I think it should be considered. I know that you hear bad stories about DBS operations gone bad but you can say that for ALL procedures. Michael J Fox had it done and worked great for him..... For about a year and then the symptoms just moved to the other side of his body. Most people if you do some reading are getting some amazing lasting results from this procedure as Cathy I am sure will testify to. If your doctors are saying that you are a candidate for this than I feel you need to put some serious thought into it. Talking with people like Cathy who are living with positive effects is how I would proceed because I want to ask people living with it not the doctor putting it in.
Wayne
Be aware that when asked if he (MJF) would do it again, he said no!
As I understand it, Michael J Fox did not have DBS. He had gamma knife surgery. DBS came along some time after and due to the previous surgery he could not have DBS.
I would check into Qigong as provided by Howard Shifke. It is non-invasive, free, and has worked for many. Look it up on youtube.
I am from Clermont, Fl. I know what you mean girl about God doing things in your life for He continues to provide daily for me in all aspects. I am not a DBS candidate because my true diagnosis is PSP. I am one of the VERY few that positive response to PD meds which is ALL God!!! When people ask me what I have I just tell them I have a form of PD which much easier than having explain PSP to people but it really is a form of it.
I have yet to discuss it with my docs....lets see what they say...it came up during a family discussion. the fact that i need to be awake while they open my skull...yikes.....I will definitely get in touch.
Wayne....that is good. I am truly happy for you...what would we do with hope and faith hmm
You are both awesome... I lived in Tampa for 30 yrs until sept 2010 then came home cause I was told I was the worst case with Dystonia in the country, They almost quit during my surgery... I was to have my surgery on Gainesville, FL at UF,
Sukas,
I have had PD for 10 years, Being awake while having brain surgery. I didn't want to consdier it. I was on a roller coaster ride with severe on/off fluctuations.
I am currently in a Clinical drug trial of a drug that most of us are aready taking it is Carbidopa/ levodopa intestinel Gel. This is delivered from a J-tube that is surgicaly placed so that the Gel can be pumped in to the intestine, a small dose is delivered every min for 16 hours a day.where it is absorbed quickly.
This study is being fast tracked. They hope that this as an availabe option with-in 2 years.
THis has given me a second chance at life I feel like I have gone back in time.
Please keep us updated on how the trial is doing. Sounds great!
U know Cassie interestingly I was asked if I would like to be a part of the clinical trial....I am glad it is helping you... honestly i am hoping and praying and waiting, like, all of us iam sure, a way to atleast stop the progression... If DBS stopped the progression or cured I wud not hesitate know what i mean?
I think we all are praying for a cure. This saved my life I was only having a few good hours a day and I was taking a pill every 2 hours.
I wish you well!
DBS can have a marvelous result--but it is essentially a medical decision.
Certainly, a person needs all the love and support possible to undergo this procedure but it is not a cure all for every Parkinson's person. I hope you are seeing a Neurologist that you have complete confidence in; if so, talk this through. If not-make sure you find one now!
I sometmes speak to a lady in a chat room who used to freeze - not just for a few seconds but for hours at a time.Since having a DBS operation that is no longer a problem. I can't remember how long ago she had it done but I think it is quite a while ago.
SuKas,
My husband has had great success. Please read his Superstars page on the National Parkinson's Foundation site. He continues to have new challenges all the time, but not shaking, freezing. We too have an interpretation of what God intended for our lives. He put Mike in exactly the right place, at the right time of his life to receive a chance for a better quality of life, for the rest of OUR lives.
The meds are HELL on earth. Weaning off them has been a blessing. The ones he still takes, take their toll.
Prayers to help you make your decision. You are lucky to have had the opportunity offered to you.
Moonswife
see that is what makes me nervous...it is not a cure all and it may or may not help...diff people diff strokes....it may take care of tremors which do bother me...but what if it starts a host of other problems?
But I am glad to hear he is doing much better....and yes meds are hell on earth ...agree
With Mike no new problems. Dr. agreed with someone as tall as he is both sides should have been done at the 1st surgery. If he had to choose again, knowing how much it helped, there would be no choice. HE's BACK.
Here's what I wrote about my DBS experience when I first joined the site in Feb:
Thanks for the many responses and encouraging words. My primary problem was tremors... so severe that I could no longer hold a glass or cup of coffee w/o sloshing it all over the place.
Nor could I eat, at least not properly. I could not control the utensils. Even tried weighted utensils w/o success. If I tried to eat a "hand" food -- a sandwich ot pizza for example -- it would flap so hard that whatever was on the pizza or in the sandwich would wind up all over me, the table, or the floor. My lowest and perhaps most humiliating point was going to dinner with a friend and shaking so much that she had to feed me!! So, I stopped going to restaurants and my "food plan" at home pretty much came down to pretzels and cookies.... real healthy, no? No.
One think that was not affected was driving, As long as the car was in motion, I was virtually w/o tremors. When I stopped for a red light or whatever, the tremors resumed, albeit less than at home or when the car was moving.
Even though I could drive, the tremors were so embarrassing to me that I pretty much became a recluse, rarely going out except when I absolutely had to, like Drs. appts or grocery store (pretzels and cookies were getting low!).
I also had a few other symptoms... difficulty swallowing and occasional freezing when walking, or rather, starting to walk. I guess I needn't really say it, but I was also severely depressed. I wasn't suicidal, but I really didn't care whether I lived or died. And the meds were doing nothing. I tried Artane and is made me sick and gave me hallucinations.
So, I got evaluated for DBS . I had bi-lateral DBS surgery in 9/10 and emerged virtually tremor free!!! Also, although it's not supposed to help the other symptoms, my swallowing has been almost 100% cured, and I don't freeze when walking at all. AND, although I am a self-diagnosed pain wimp it was virtually painless! I was very, very fortunate to have a brilliant surgeon who is apparently world renowned for DBS... he not only does it, he travels elsewhere in the world (i.e., outside the Washington, DC area) teaching it and mentors others locally.
I have or admit, though, that being awake ( or, really, semi-awake) during the procedure was kind of weird... but not upsetting. Just before they took me into the OR, the Dr. came by and asked if I had any questions. I said, "Yeah... I'm lying here wondering what made me think that elective brain surgery was a good idea?" Besides, I thought, "What if they open my skull and find nothing inside?
But it was a good idea. I got my life back. Not w/o some problems, but still a good idea. Primarily, it left me w/some slurred speech and almost indecipherable handwriting (have great difficulty even reading my own writing). But, I've had several years of speech therapy, the latest (and most effective) being the LSVT method, and it's been very helpful. Most days I'm pretty intelligible, others not so much. John Denver did a song years ago that applies: "Some Day Are Diamonds, Some Days Are Stones". The tremors on my right side (which was always the worst) have come back a little, but zero on the left. And, I'm due for another "adjustment" of the controller/battery pack soon. Meds seems to have little effect on anything. Although I have some tremors, I can eat and drink like an (almost) normal person. I also used to have pretty good skills on the computer keyboard, but now I type a work and often there will be 5 or 10 characters repeated which I did not type (at least not Internationally)... a string of S's of A's, or O's, etc.
So, that's pretty much my PD/DBS saga. Would I do it again? ABSOLUTELY!! If you have questions, please let me know.
Oh, BTW, being a newbie here, I don't know if this has already been discussed, but if you haven't already seen it, the movie "Love and Other Drugs" is about a 26 yr old woman who has PD. I highly recommend it -- unless you're offended by nudity or profanity.
Hi very well written and helpful...lolz i have the same fear...what when they open my skull and they find it empty:)) I am in the DC area too...which doc did u go to?
Zachary Levine - offices in Bethesda & Rockville. Great surgeon, great guy. Oozes self-confidence w/o being arrogant.
How far is Johns Hopkins??!! I'd go there in a flash, but I'm in Boston, all facilities GREAT.
I just trid to make a link to Hopkins but they're having web problems.
Try: JohnsHopkins + Deep Brain Stimulation
Just a note regarding 'Love and Other Drugs' - my opinion -
If you are the least bit offended by nudity, this is not for you. I don't watch a lot of 'R' rated movies but have seen some and have NEVER seen as much nudity as this movie. (And I'm talking about a movie supposedly focusing on PD? - as it was advertised). I don't feel it really did focus on PD, although does do a fairly good job depicting life on meds, life without meds, emotional battles,etc. Overall I was disappointment and feel if they had left out some of the sex and focused on the disease more, it would have been more powerful. This is my personal opinion. For some, they loved it as is.
I agree...this is something I had written on the same topic
Love and other drugs...
by Sutapa Kasibh on Sunday, November 6, 2011 at 10:52am ·
So, during one of my nightly sojourns, where I usually teeter between my body yearning to rest,and my mind going a mile a second, or vice versa, where sleep is elusive and yet do not have the energy to do anything else, twas one of those nights that I teetered to the couch, tried to find a comfy position which is a challenge when one is in a vibrating mode..ah the joys of having Parkinson's, one never knows what to expect next....anyways grabbed the remote and was channel surfing looking at the screen through bleary eyes when i saw Love and other drugs, paying on HBO...
i vaguely remebered it being something to do with a Parkinson's patient so I said...here it goes and clicked on it....i thot let me see how the heroine deals with the disgnosis of PD.......
And all I seemed to see was sex, sex and more sex..... i rubbed my bleary eyes and thot huh! she seems to have a lot of energy, and on watching furrther where they show a few tremors n stuff, she is in stage 1 which is touted as the 'honeymoon' stage, where you take the pills and go about ur daily life almost, almost like normal,physsically atleast, emotionally a whole diff story altogether...and u think to urself I can do this, this ain't bad.... ah one beginss to learn as the time goes by...as the condition takes over ur mind body and soul subtly but surely...anyways that night got tired of watching the onscreen acrobatics and decided to try and sleep instead.
Then again during another of those nightly sojourns....happens a lot u know.. this time got to the movie at another section where they ..... the couple... are travelling to diff places to find a cure or alternative treatments and come to the conclusion that there is no cure, just claims to control the symptoms..... where the lady breaks off the relationship as she does not want to hold him back from his life.....
And that I cud relate...where i do not want to be a burden, physically, mentally, emotionally and financially wud like to retain some dignity u know.... I smile, giggle and breeze thru life most of the time trying not to ponder on the future, but those raree times, I give in and think, I shudder to think of what ifsss, then realise no point in ruminating and becoming maudlin cos all that does is give u a headache and create wrinkle lines on ur forehead, I decide I like augh lines better and as I look up at god i thank him, even while i ask the question ...why why why....no answer forthcoming... guess the email from god is somewhere in my spam folder....
I think to myself... the story needs to be told, the real life needs to be in reel life so ppl can understand the stark truth...any takers?
I had DBS two years after my diagnosis because I could not take Comtan any longer. It was scary but it has made the world of difference in my quality of life!!! So much so that I had my left side put back in after I contracted mersa from the hospital (please note that is extremely rare!!!) Would I do it again, IN A Heartbeat!!!!!! But you need to have complete and total faith in your physician and his staff. PS I to am available to either email or call 24/7 if you need any thing. I can't tell you to have the surgery, I can only tell you about my life and how it has improved!!!
For email contact use private messaging.
I live in Charleston, SC.
Thank you so much for your words and your contact info...will def contact once I have a discussion with my docs and see if i am a viable candidate or not...
I am four days post phase 1 of DBS surgery. Try not to think about the fact that you are a wake. You won't feel any pain as the brain has no pain sensors. I found it amazing that I could use my iPad in the operating room and even took a few pictures of myself on the non-sterile side (tried to capture my surgeon inserting things into my brain) but unsuccessful. Definitely find a doctor who practices frameless DBS surgery. Mine did, but the other doctor assisting in the procedure doesn't so I had the frame on my head 3 hours longer than expected due to my surgery being pushed back 3 hours for an emergency procedure before me. Honeymoon period is awesome! No problems getting out of my bed, no toes curling, no slurred speech, the tremors are barely there. It's amazing! call or email me please and i'll give you my whole story .
Contact details through private messaging
Jillian is my name
Wow Jillian thanks a bunch for ur update...u seem like me
trying to take pics in the operating room:))) did they allow u to take ur ipad?:)) I wud probably be facebooking if i am allowed....hugggs and take care wil def call soon...now rest up....have been having a lot of toes curling recently
Thanks SuKas. I agree alot with what Thumbpick had to say about being semi awake and doing it all over again. Absolutely. Besides the Congressional Caucasus that occurs next to the operating table as your brain is exposed and the jack hammering that goes on, it was a breeze. Don't think about the procedure but keep your eye on the prize or target. I was amazed this morning when I could actually zipper my 5 year old's jacket as I got him out the door for school. God is the unseen physician that uses the doctors as his tools in the process.
Yes - I did get to bring the iPad in, but I couldn't really position it well enough to look at facebook.
Your experience is so encouraging, Jillian. Thank you. Best to you for a long, very long and continuing honeymoon.
I completely agree re: finding a surgeon who practices frameless DBS surgery. Mine did also. I found the being awake (actually it was more of a "twilight" awake/sleep). I wasn't particularly concerned w/being awake and found it not scary at all once in the OR.
Here's a DBS video.... my hands shook at least as bad as the man in the video. My results were as dramatic as his. I watched this before I had DBS and it made me cry to think that I might again have some semblance of a "normal" life.
You can see other videos on You Tube... just search for DBS or Deep Brain Stimulation.
Subject: Today Show brain surgery (tremors) - 5 minute video
This operation is not specifically for Parkinson’s, but a related problem. However, at the end they mention that it can be applied to Parkinson's as well.. Apparently this is pretty much the same procedure MJ Fox had..
msnbc.msn.com/id/ 31388323/#35215311
Oops! That space in the link kills it... try:
Woild u tell me whole storu.i am going for surgry in apr.
Yes faith does help us get through a lot, though I do get mad at HIM sometimes...I end up making peace
It is hard to fight the good fight all the time and frustration does get the best of all of us at time. I know you are strong and you have a great family to lean on in those times. Remember that you are not alone!!!!
SuKas,
Wayne and all of us are rooting for you.
My first surgery was in 2005 when U2 was touriing and somehow Bono's lyrics gave me strength to go on. The "song, "Electrical Storm" seemed very apropos! Many of his songs are based on Scripture i.e. "40" based upon Psalm 40.
You'll find something of your own to strenghten you
and you'll get through it!!
The meds are a whole different story isn't it....I am sensitive to them and end up having all the side effects....jeez can be tough sometimes...i hope this combo stays put for u ...huggs
I appreciate this dialog so much as I am facing the DBS decision--some days I wish it would be tomorrow; other days, I think I could postpone this decision for years-- but that's not realistic. I'm 77 in otherwise good health and am still able to go for my daily jog, although my tremor is now making me more reclusive Does anyone know anyone who has had the real time MRI (asleep) DBS? That's just become available in PIttsburgh.
I've not heard of the MRI DBS. In fact, I was strongly cautioned by the surgeon that I could never again have an MRI (post-DBS) -- at least as long as the electrodes are in my brain -- b/c it would cause, to use his words, "permanent and irreversible brain damage".
Thanks,TP...this is new technology--been approved for about two years--seems like it would have advantages, but I dunno...why is everything such a roll of the dice in this area!!!!!
My surgery was a newer one using an MRI - my neurologist answered my question of doing MRI's for the next round (other side) by saying he's got the technology to now do it. I can get more info if anyone's interested. He practices at the Muhammad Ali Parkinson's Research Center in Pheonix and all the neurologists there are outstanding.
Dear SuKas,
I was terrified, too and I have a mix of dystonia and Parkinsons' so it was more difficult for all. Making a very long story short, my neurologist recommended a second separate DBS for the dystonia. It's a whole different stimulation system. I have been told that I am one of 50 on the planet who have this sort of setup. The key is the programming. I have a brilliant programmer and always have to take a plane ride to see her. She is a genius with electricity! I can give you her contact info if you want (mddesign@comcast.net is my email)
One or two days of your life and it improves your quality of life 60%›——70%.
The worst part is the drilling of the head, but you don't feel ANY pain. Pick good docs and an EXPERT PROGRAMMER!
Let me know how it goes, please. Good Luck!
How does one find an expert programmer? Google is no help...
Your neurologist should be able to program it without a problem. If your neurologist is recommending DBS and doesn't do the programming, you may want to consider another neurologist (not that he/she isn't a good neurologist) more familiar with DBS/Parkinson's specifically. A Movement Disorder Specialist would be ideal.
SherriW,
With due respect I don't think a neurologist is as good as someone who does it all day every day. There are at least 60,000 possibilities.
For a simple case, yes, maybe. But not for the complex cases. That has been my experience. And I use a big Boston Hospital.
The typical team is a neurosurgeon, a neurologist, and the programmer. Believe me, I know and have been through the wringer.
What are yo putting in as criteria? There are two really talented ones that I know of: My own, and a lady out in LA , Roberta Rubin.
I can give contact info for mine but I want to check with her first.
OK?
OR: (this one has Dr.Okun, a highly respected Doctor, specialty dystonia.
P.S. I totally agree with whoever wrote up there ahead of me that I would do it again in a heartbeat!!! And I have had it twice.
Thank you--why twice?
Two sides - two separate surgeries. Some doctors do one at a time when one is more affected than the other; when both sides constitute surgery, they'll do them at one time, usually only one stimulator needed. Two surgeries require two stimulators, one on each side. Hope that helps!
Sherri you are right—— but the confusing part is that the 2 surgeries in what you describe both go into either side of the STN (subthalamic nucleus).
What I have is two batteries; 2 separate systems. One battery is connected to the STN, for Parkinsons', the other goes in to the Globus Pallidus for dystonia.
I'm usually all for treatments that are of benefit but in this case, please consider that the PWP that have had DBS and are not responding may have had a bad result and are no longer with us. this happened to my friend, the first person to counsel me after my diagnosis. Something went wrong with the DBS and he was never the same. God loved him too. I don't believe that faith in God and a positive attitude with always yield a succesful surgery and recovery..
Hi -
I have left my story for you on a blog post here or you can read it at parkisnsonsjourney.com. I agree with several above - I would do it again (and will) in a heartbeat. You can email me likewise, any time. I'd give you my phone # but I don't always have it and share it with my son.
~Sherri
Email: details through private messaging.
You are still young, and although it is scary, it may be a blessing for you. My dad had it in his late 60's, and they were unable to complete it, but miraculously, his tremors stopped in spite of that!!. Remember God is in control of all things.
I wrote this for a class in college, it was about PD.
I am writing about life after DBS now..
A Hidden Disease
Have you ever been in a hurry standing in a grocery line and the elderly lady in front of you is taking her sweet old time getting her money out to pay? How about sitting in a restaurant looking around a seeing an older man shaking as he is trying to lift his fork to his mouth, but the food on his fork never made it that far? What is going through your mind when you see a person in their 40’s not walking very stably as their upper left side of the body is shaking out of control?
This hidden disease is known as Parkinson’s disease/PD. Are more voices needed to inform people that PD can at any moment affect someone they love? Knowing about this disease and the effects it has on individuals living with Parkinson’s and their families will help open the eyes of society to something that can affect their lives just as fast as the wind blows through your hair on a windy day. One family that thought this disease happens only to other people, found out the hard way it can happen to any human being no matter who you are. That particular family was Cathy’s, when it was discovered she was the person with this hidden disease.
Gaining the information to help others cope and live with this disease will help us shout out to the world that without their voices this disease will continue to be hidden. Each of us needs to absorb information on this disease in order to inform society this disease needs our voice. To enlighten others about Parkinson’s disease, one needs to familiarize themselves on what PD is, who is at risk, the symptoms, what types of treatments are there, if any, and lastly what is the prognosis or prevention to fight this battle.
Parkinson’s disease is a brain and movement disorder. This happens when the nerves cells in one of the control centers part of the brain die. The cells in the brain produce a chemical called dopamine. Dopamine lets the body muscles and movements be controlled. According to the National Parkinson’s Foundation when approximately 80% of the dopamine-producing cells are damaged, the symptoms of Parkinson’s disease appear (2009). Losing the chemical dopamine in the brain causes body tremors, slow movements, balance difficulty, jerky movements, stiffness and in some cases depression and muffled speech. These are only a brief overview of what may, can, or will happen.
Diagnosing PD is extremely difficult, lengthy and involves a multitude of different things. There is no certain test to diagnose this disease; it includes a careful medical history and a neurological exam. A few other test include a variety of blood tests, brain scans (EEG, MRI, X-rays) and may include a lumbar puncture to rule out other conditions that may have the same or similar types of symptoms. According to the National Parkinson’s Foundation there are five known stages of Parkinson’s disease. Stage one show mild symptoms on one side only. PD presents tremors of one limb. Stage two includes bilateral symptoms and posture being affected. Stage three is significant slowing of body movements along with early impairment of walking or standing and equilibrium off. Stage four has severe symptoms, no longer can live alone, limited walking, and rigidity. Stage five is cachectic stage, invalidism complete, cannot walk or stand and now requires constant nursing care. Individuals with Parkinson’s may or may not go through each stage. Some people never go past a certain stage. Every individual is different.
The actual cause of PD is unknown. There are many different causes that can attribute to this disease. The cells in brain that die can be caused by certain environmental toxins, head trauma, poisoning and infection. According to the Parkinson’s Research Foundation Update report using certain known pesticides increases the risk of people developing Parkinson’s disease. “The world highest prevalence of Parkinson’s disease by far has been found among the Amish religious community, where Parkinson’s disease is two to three times more prevalent than anywhere else in the world.”(2009). Researchers believe this can be cause mostly because the Amish are mainly involved in agriculture where pesticides are being used.
People wonder if there is a certain type of person most likely to or more at risk to getting PD. The type of person who is at risk of getting PD is each human being. Both male and female develop this disease. Although statistics show that more males than females have Parkinson’s, however these numbers change yearly. According to many different sources such as; Parkinson’s Report, National Parkinson’s Foundation and medical information the number of new cases diagnosed each year range from 50,000 to 60,000. That number is joining the 1.5 million Americans who already have this disease. This condition usually develops after the age of 65, researchers have documented that individuals under the age of 50 being diagnosed is between 5-10%. Most reports state that this disease is not hereditary. However; in less than 1% of cases a few families have shown that there are signs of gene mutation; however, this is not the case in most people diagnosed with PD. The majority of people who have PD something between being born and now has happened to them or came into contact with something that has caused the brain cells that affect the nervous system to slowly die. Something as a blow to the head/injury might cause PD. Another option considered is something that may/has entered the body by touch, or inhaled into the blood stream.
There are several different options to treat the symptoms of this disease. The options for this disease are: oral medicines, and a few alternatives actions along with taking medications, and new treatments that are being tested. The most conventional treatment is through oral medications. A Medicines used are to imitate or replace the dopamine which helps calm the tremors, stiffness and slow mobility. Although, oral medications are used to treat the symptoms not all medications work on everyone. Each individual who has PD is unique; it depends on the symptoms they are experiencing to what medications a neurologist prescribes. Over time your body may start to stop responding to certain medications, and at that time the dose may need to be increased or medications need to be changed. There are numerous medicines that are very effective in helping to calm the symptoms of PD. The symptoms people experience from PD are mostly due to the lack of dopamine in the brain. Other alternatives that are used in combination with some medicines are: healthy diet, exercise, yoga, massage and acupuncture to help the tight and rigid muscles relax.
New surgical procedures/treatments are being done to help slow down the progression of PD. They are deep brain stimulation, which allows the patients to cut back on medication being taken. Surgeries also being performed are lumbar puncture and stem cell. These treatments are experimental. Stem cell surgery includes fetal stem cells, Adult stem cell, growth factors or gene transportation into the patient’s brain. The procedures goal is to correct the defected chemical PD patients are lacking. Even though these procedures are extremely attractive, there is further testing needed to be done in order to make it effective and more practical during the transportation of cells. Surgery is not a cure, but it does relax the symptoms of PD. With the risks being involved in brain surgery, it is not even an option until all other possible medications have been tried, and have failed in easing the symptoms of Parkinson’s in a patient. According to the Michael J. Fox Foundation, research on this disease is “thriving.” The Foundation has raised over $142 million for research. As of today, despite the medical treatments being done for this disease the prognosis is the symptoms will eventually worsen over time and become less responsive to the medications being taken.
Preventions are a thought every person who has PD or their family members struggle with daily. Is there any prevention people can take in order to not come down with PD? That is a question we all must research. According to USA Today, Fox stated there is no doubt that a cure can be found, “The only question is when.” On March 9th, 2009 was a thrilling day for patients with PD, which was the day President Obama lifted the federal restrictions on stem cell research (2009). In doing my own research on a few questions asked to 48 people that included everyday ordinary people, people with PD and neurologists, believe that more government money needs to be invested in finding a cure for PD. It was also stated that it is ethical in finding a cure. 100% of people polled believe that a cure will be found in their lifetime.
In conclusion, I will be a voice to help inform society of this hidden, but not forgotten disease. Knowing what Parkinson’s disease does to a human being and the effects on not only to the individual, but also their family needs to be addressed. Investing the time to help find a cure or just being there for someone living with this disease is a gift no one can put a price on. Currently there is no cure, but people do believe the cure is right around the corner. As everyone wakes up in the morning and rise out of their beds, please remember that this devastating beast called Parkinson’s can affect any person or a member of family as fast as the wind blows through your hair on a windy day.
That's quite a treatise...thank you
I considered DBS for about 3 seconds and decided against it. My brother is a doctor and worries about the possibility of bleeding to death. Also, I think I heard the figure 23% (percentage of DBS's that do not work). I would try natural routes before considering DBS.
I am 48 y.o. I have had Parkinson's since age 31. I had DBS surgery in Jan of 2007. It was the best thing I ever did. It was not that big of a deal once the first hole was drilled in my skull. I have had the unit replaced 3 times. The replacement surgery is same day outpatient surgery with very liottle recovery time. I used alot of electricity so the battery lasted only a year. The last time I got a replacement of the neurostimulator they gave me a rechargeable unit that will last 10 years. 17 years after getting the disease I still am able to drive and am on very little medication. I can't guarantee the same results for you as I got. If your Dr. says you qualify and your insurance company is on board. The other thing to consider is that all surgery has risks. The risk factor for DBS is pretty low.
My doc says the sugical risk is about 3-5%.-- about the same as the percentage for hip replacement surgery.
I just had the 2nd surgery last Tues. I felt I was heading towards my last shot. DBS only has a window that you can do the surgery. When you get "too" bad you won't be able to have it done. I am60 yrs old. Diagnosed about 10 years ago. I have a long way to go now but I don't regret it.
DBS Story
