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waruna01 last won the day on December 10 2016

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About waruna01

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  1. You may be able to delay Sinemet if your body reponds well to something natural like mucuna which,is essentially natural dopamine
  2. For those of you had DBS, can you post how many mgs of Sinemet you take post DBS per day? I would like to know the total dose per day in mgs
  3. Speech degradation post DBS can also happen gradually. At first, degradation may be so subtle and you may not even notice it. It takes about 5 years for speech to deteriorate completely and other DBS side effects to fully surface. So be careful about listening to people who just had DBS in the last couple of years. At that point, it's hard to tell if it is the DBS causing the side effects or disease progression. It's easy to blame it on disease progression than DBS and most DBS centers blame it on disease progression. That could be why DBS side effects get overlooked in studies
  4. Do you need to start azilect at 0.5mg and gradually increase to 1mg or can you start immediately at 1mg?
  5. It seems side effects are hit or miss but if it affects your speech, your voice is gone for good for the rest of your life. Changing stimulation parameters can only provide limited benefits as change in speech likely due to micro lesion effect,from lead insertion It's a big gamble especially when it comes to speech. You only realize how important your voice after losing it. It will also stop other people from talking to you. Speech side effects can negate benefits of DBS Ind_PD_rev_.pdf
  6. I can assure you rate is more than 0.5%. Speech side effects from DBS is very common and it's one of the major side effects from DBS. whatever the real number is, if you are one of the unlucky ones to experience speech side effects, you will experience 100% of its bad effects including loss of your social life. You are not in the DBS group just yet to see the full picture of DBS. Either you or someone in your family needs to have DBS to get a full picture of DBS. You can't understand what it really feels like to have DBS from reading comments or doing online research. Same with losing your speech. It may be only a small problem for a person who doesn't talk much or a major problem for a chatty outgoing social person. So be careful about reading comments. I can understand why people don't like to talk bad effects from DBS as it's the only hope for PD patients to turn their life around. I am not saying DBS is bad. It may work well for the right person but be warned DBS is notorious for speech, balance problems post dbs. It can also lead to uncontrollable anger, emotions, sucidal throught etc. you will see such posts here in this forum as well. so be warned prior to surgery. It can happen to you and only you can decide how big of problem that it would be as everyone's life's are different and opinions are personal and want necessarily apply to another persons life. It could only be a small problem for one person but a major problem for another person who is at a different age and a different stage in life. So be warned when reading comments.
  7. YOPD progress slowly. If he exercise dairy, sleep well, eat healthy organic food, keep stress under control, he may have a close to a normal life. I also recommend vit d, good herbs such as Ashwaghnda, tripala, colostrum6, chyawanprash, mucuna to be cycled one at a time every few months.
  8. I have seen numerous published articles on scientific journals that talks about speech and balance problems post DBS. If you spend some time on google, you can dig them up. It's out there if you do an extensive research on side effects from DBS. There iare dozens of such stories in this forum alone if you do a search. I have also been to several DBS troubleshooting clinics in the country including Dr Okun's UF Florida center and Sierra Farris in Colorado. I also learned from them that speech and balance is a major issue post DBS on STN bi lateral leads. This is why UF center stage the DBS surgery one lead at a time. They see hundreds of DBS patients a year. This is an unmoderated open forum where we express personal opinions. What I made was generalized observation not a scientific claim. I am not here to tell you DBS is good or bad for you. What I said is be warned that your speech, balance, swallowing could take a permanent drastic hit post DBS from bleeding during lead insertion which can lead to permanent mini strokes in the brain and from stimulation induced side effects. This is also why dbs manufacturers now even added speech side effects to list of DBS complications in fine print. Since DBS is only becoming mainstream PD treatment recently, it will take at least 10 or 20 years for these kind of stats to come out. Even if they did, bad effects will be watered down from marketing as DBS is now a million dollar business. Most people do dbs because they are desperate for some relief after battling PD for years and will overlook the side effects. This post is not meant to say DBS is bad or good, I'm just highlighting a potential side effect which you may not wish to have post DBS. You may feel like you lost your soul when you lose your ability to talk and interact with other people. You can't undo the side effects of this surgery despite what they claim as reversible. Once implanted, you are stuck with it for life wheather you like it or not.
  10. Agree 100%. Most people lose their speech after DBS and lose their ability to communicate with other people. This is such a excruciating pain to bear as you are left depressed as you can't express your emotions. People will also avoid speaking to you as they can't understand what you are saying. Also, losing your balance is just as bad. Be very very careful and think very carefully before DBS. Mini strokes and bleeding inside brain is also common which can lead to permanent PD like symptoms post dbs which they will later blame on disease progression. Swallowing problems also common post dbs. Brain doesn't like to be poked with leads. Trade off may not worth it for most people if they end up losing their speech and balance and as most do. DBS companies have stepped up their marketing in order lure people who,don't even need dbs into getting dbs. So don't fall for their trap. Some centers also recommend dbs prematurely saying window will close if you wait. Don't fall for that. Knowing full well you will get a new set of symptoms to deal with post dbs, leads inside your brain, two holes in your scull and a battery in your chest that you can't live without and wires running through your neck. You will hear the rosy side of DBS from virtually every one and from the internet. This is the other side. So you can make a good independent judgment. DBS is not the holy grail for all PD symptoms. It works best with tremors and dyskinesia and few other PD symptoms but will have its own problems to deal with after surgery.
  11. Has azilect price come down as we have several generic manufacturers entering market now?
  12. Add Ashwaghnda to mucuna. Great combo. For some, mucuna doesn't work well. Some can substitute it for Sinemet. Mucuna has more healing properties so good for occasional use too
  13. My experience is if you have to sacrifice your voice to gain a benefit from dbs as with most dbs patients, think very very carefully if the trade off is worth it. Once you lose your ability to communicate with people properly, it can lead to depression as you will have to hold off your emotions without expressing them to others. Other people will also stop talking with you as they can't understand what you are saying properly. This is the worse part. You will feel isolated as you are living in a bubble.
  14. It takes years of trial and error programming to come to optimum results
  15. Don't do dbs until your PD has substantially affected your quality of life. DBS has major trade offs despite all the marketing you see online. If you can still function without DBS, it may be worthwhile to hold off