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Everything posted by waruna01

  1. Newest DBS system st Jude's

    It takes few years to get dbs settings optimized provided they implanted leads with millimeter precision. Don’t make any judgements until at least 6 moths. Go to an expert programmer like Sierra Farris in Denver if side effects worsen
  2. Infinity DBS system - issue

    It takes few years to get dbs settings optimized provided they implanted leads with millimeter precision. Don’t make any judgements until at least 6 moths. Go to an expert programmer like Sierra Farris in Denver if side effects worsen
  3. Approved for DBS

    You should ideally only only do dbs when you have nothing to lose. Be warned of possible speech and balance trade off
  4. Mucus built up in throat after dbs?

    Cut down on sugar including candy and cold foods. Drink hot water as a habit all the time and drastically reduce or eliminate all sugar intake. eat warm foods all the time. Mucus will go away. Spirometer helps too. Reducing dbs frequency to 130 or below and pulse width to 60 might help too. Bi polar settings another option to try. Key is to turn ON correct electrodes for stimulation
  5. Anyone experienced this ? Any tips to overcome?
  6. Take Rasagiline or wait?

    It may delay your PD. So yes I would take it.also consider Ashwaghnda, Shankhapushpi. They are excellent brain tonics. Don’t forget to exercise too
  7. Approved for DBS

    Vanderbilt has a great reputation. When it comes to dbs, volume matters. Ask your surgeon how many dbs surgeries he or she has completed. Ideally it needs to be over 100. Experience will reduce side effects from lead insertion such as strokes and suboptimal placement of leads. My recommendation is to wait for now until you are 100% sure you need it. and do dbs on one side when you do it which will reduce side effects by 50%. You can do the other side later if PD develops in other side later on. Greater the risk of side effects with two leads.
  8. Approved for DBS

    You can’t undo this surgery and it’s good and bad effects. Don’t do it with second thoughts about it. You seem like you are considering it for pressure. Your body and mind will tell you when you really need to consider this surgery. It’s not a marathon. So don’t rush. If you wait few more years, they will likely have more advanced dbs devices and implantion techniques by then. You can also research and learn a lot by then about good and bad side about dbs. Some thing to think about. You might even be able to get the dbs implanted by a more experienced dbs surgeon who has implanted hundreds of such devices. You will have time to research your doctors and dbs team. Get more second opinions from other dbs centers. Sierra has an excellent dbs team in Denver. UF Florida is good too.
  9. Having fun with DBS & Blood Pressure

    I would ask dr okun in this forum
  10. Constipation

    This constipation recipe has done wonders http://movementdisorders.ufhealth.org/2011/09/12/parkinsons-treatment-tips-for-constipation/
  11. Approved for DBS

    Don't have dbs if you are unsure if you need dbs. Dr okuns group don't necessarily recommend dbs if you are satisfied with meds as you can read in PDF. Some center like to persuade you to do dbs early than late. This is not very helpful given complications from dbs. Dbs come with a trade off usually with speech, balance, other emotional side effects like uncontrollable anger, depression etc etc. Only consider it when it's worth the trade off. Also consider doing 1 sided dbs as it will greatly reduce speech balance and other side effects. You may not need other side in your life time. My recommendation is Only do dbs when you really really really feel that have no other way around. Less is better with dbs or none if you can stay happy with just meds. You really don't need machine and holes drilled in your head unless you really have to.
  12. Approved for DBS

    Also read this
  13. Voice weakness

    have them tone down the frequency to 130 or below. Frequency, turning ON incorrect electrodes, mono polar settings are mostly to blame for speech issues. If her tremor is well controlled under a frequency of 130, with bi-polar settings and optimum electrodes are turned on, all the better.
  14. Voice weakness

    Your chances of speech problems goes through the roof with bilateral STN placement. If you only have PD symptoms on one side, avoid bi lateral DBS. Most centers will talk you into doing both sides saying you might need both sides in the future. Dont fall for that one unless you have equally bad symptoms on both sides. Dont anticipate future and do DBS on a side that you dont have have any PD symptoms to begin with. One side DBS may be a perfect compromise between speech and benefits of DBS. Think very carefully before doing both sides.
  15. Newest DBS system st Jude's

    Not,many people have this type of unit yet I believe. Most people are with medtronic and most programmers around the country are familiar with medtronic and it may take them years to master this new system. Something to think about. You may have limited options to get second options from other programmers in the country if you go with this type of unit
  16. Voice weakness

    I would say 50% of speech can be improved with proper programming as mentioned above.

    Read the thread

    There is also a book called DBS a patient guide written by Sierra Farris I highly recommend reading prior to DBS which can be found on Amazon

  20. New guy here - a journey I'd like to avoid

    Read my posts on
  21. Not Diagnosed, However Need Advise

    My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture. Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine
  22. Not Diagnosed, However Need Advise

    There is absolutely no benefit in diagnosing PArkinsons early. If you have PArkinsons, it will surface eventually and your body will tell you have problem in your body, NOT YOUR MIND !!!. If your mind is telling you have Parkinson's, then you don't have Parkinson's. People usually find out Parkinson's out of the blue and as a surprise for both parties. They don't guess that they have Parkinson's and get it confirmed by a doctor. That is not how it works. Why not live like a normal normal person until then? What is the point of knowing early? If your smell is still good, which means your brain cells in substantia nigra are still good and firing properly, it's a good enough test to exclude Parkinson's without spending thousands of dollars into expensive tests and specialist doctors. There is absolutely no benefit in getting an early diagnosis. It will only make you face problems with insurance and other life matters with your friends and family. In fact, you shouldn't believe you have Parkinson's even after getting an official diagnosis for several years because it could be wrong. That is the only sure way to know you have Parkinson's by denying you have Parkinson's as long as you can. You can't keep a rubber ball under water. Parkinson's will surface and show its face at the right time if you are bound to get it. Don't runaround looking for Parkinson's. Until then, please enjoy your life. people are falsely diagnosed when they don't have Parkinson's because of paranoia
  23. Not Diagnosed, However Need Advise

    What you need is a very long vacation.
  24. Insomnia

    You need to exhaust your brain with plenty of mental activities in order for it to shutdown. Ashwaghnda can also help,with sleep but don't take it with other sleep aide such as melatonin or klopin