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About janvier

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  1. Newest DBS system st Jude's

    I have St Jude brio rechargeable. I agree that as new companies come into the market Medtronics will have to increase functionality and decrease cost which will be to the advantage of the consumer. Presently as far as I know there are 3 companies on the market: Medtronics the and 2 competitors namely St Jude which became Abbot this year and Boston scientific. Assuming that the electrods are placed optimally, You need a good programmer to work with you hours long day after day. It is an iterative long process which may take 3 to 4 weeks.
  2. This is a relatively old thread. But still assuming some people will read it, I will respond. I have PD for 20 years now. I had two DBSs. One in 2006 unilateral VIM and one in 2013 bilateral STN. The first one solved all the tremors on the left and I gained 5 to 9 years. At that time there was absolutely no symptom on the right, As years passed I started having tremors on the right . At a certain point they became intolerable. The Neurosurgeon suggested that we do bilateral STN because bilateral VIM is not done due to balance problems. I agreed. STN was done leaving the existing electrodes in VIM In order to avoid unnecessary complications.. But this time things did not happen as I expected. First I had involuntary movements on the left and balance problems, now weak voice, dry eyes and mouth and swelling legs. The IPG was totally reprogrammed one year later after surgery. Now every quarter the program is modified. I am using eye drops continuously, wearing tight socks and keep with me always a small bottle of water. PD is not an easy illness. You have to fight and that is what I am doing now. I hope this helps.
  3. Newest DBS system st Jude's

    Hi everybody,, yes Lopez I have St Jude and it works well. St Jude is now Abbot. They are quite sensitive to questions and comments. In fact one year after the surgery I had some timing problems with the recharger. It recharged but in a disproportionate way. This was annoying. I told Abbot and they gave a new one right away and took the old one.
  4. Can dry eyes be treated.

    Dear Doctor, Until recently I did not know about the relation between dry eyes and psrkinson"s.I hev PD for the last 20 years. I have had one VIM and one bilataral STN. The STN is stimuleted. On 2016 I started having dry eyes and seeing object double, surfaces covered with geometric shapes and edges and coners with moving little insects.I know that as regular treatment I have to take eye drops to luudricate the eyeball I have the following questions: 1. Is there a strong medication or exercise or surgical instrument that will speed up the initial treatement That can get the eyes back to normal and then start the regular maintenance. many opthalmologists have very llittle idea on this relationsip between the two diseases. 2. Is there any relarinship between dry eyes and diurnly halucinations. Since I tried to write this looking at a screen wit everything doubled, there are probably typos. Sorry for that. Thanks,
  5. Voice weakness

    Look at my experience. With unilateral VIM DBS I had no trouble.The moment I had bilateral STN side effects and all kinds of trouble started. These are weak voice, slurred speech, cognitive decline like the lost short memory, not easily recognizing places recently visited, words escaping while talking, hallucinations and itching scalp. Each one of these is a discussion subject. The words escaping are searched and found automatically by the brain and presented to you later after the speech is finished. This remembering period may be from a few minutes up to one day. These symptoms are either coming from the PD or the drugs, In any case they are there. We should try both speech and other therapies to deal with them. Change drugs if possible and play around with parameters of the DBS. I hope this helps, so that we are not just a bunch people suffering from PD but individuals trying to help each other to suffer less and help the Neurologists to understand the disease better.
  6. My experience is that the tremor on the left side started first. I could do everything with the right side. Then for 9 years there was nothing on the right but increasing tremor on the left. It became intolerable and I underwent unilateral VIM DBS and the tremor suddenly stopped. for the first few years after DBS all was normal. Then tremor started on the right side and eventually became intolerable. Thus 7 years after the first one a second DBS was done as bilateral STN. Now I am OK except for drooling and speech problems. I hope this story helps.
  7. Voice weakness

    Sinemet is an absolute necessity if the patient is having those symptoms and had DBS or not. In fact there is no other choice, but we must not forget that it also has many side effects see sinemet side effects. Taking drugs the less the better. We should of course become knowledgeable about PD. Be able to discuss it with the MD and among us. But I think that for dosage of medication ie when and how much should in the end be decided by the Doctor.
  8. Voice weakness

    If I may intervene. Yes the DBS does not need any medication to function and in fact in my first surgery to suppress the tremor, I abandoned all my medication for some weeks. , although my doctor told me to do it gradually. Later to have full control of my body I started taking medication increasing the daily dosage very slowly, until the optimum was reached. In the second one, which is bilateral STN currently I am not taking any dopamine at all. With Pramipexol or Requip llife continues, but of course I have side-effects.
  9. Voice weakness

    Good idea. In fact I know that ladies are using coconut oil on their skin or hair to have them smooth. I'll try that. Even if it does not help it will not do any harm. By the way you made this suggestion based on any kind of experience or knowledge that anyone has done it before?
  10. Voice weakness

    No I am preparing and accumulating information for the trials which is planned to take place in september. Of course I am taking into account the views of all doctors and experienced patients that I can reach.
  11. Dear Doctor, After bilateral STN I have Pulse = 60, Frequency - 180 Hz, Amplitude 4.2 and bipolar stimulation on one side. Can this frequency be decreased to 130 or lower values to decrease the speech and swallowing problems while controlling the tremor at the same level by increasing the amplitude. Thanks
  12. Dear Doctor, There is some discussion in social media about the benefits of taking Coconut OIl and Turmeric (Curcuma ) regularly. It is argued that these two substances help in the fight against brain diseases like Parkinson. There may not be any scientific proof yet, but is it possible to say that these arguments basis and if yes what can be the recommended daily intake for them. Thanks.
  13. Voice weakness

    Thank you Linda for the valuable advice. If I place ice on the scalp will it not affect the leads and the rest and cause some kind of trouble?
  14. Voice weakness

    Another point as contribution to this discussion. Since the day of my DBS STN, my scalp skin itches. If I try to touch my head a little bit the itching becomes worse. My Neurosurgeon says do not touch your head. I went to several dermatologists all they can do is to give a shampoo with Cortisone to wash the head, but that does not help either. Does anyone else have this problem and what do you do about it.
  15. Voice weakness

    Hi Waruna01. Of course as you say the lower the numbers the better it is. It will also avoid eating up the battery. Under the condition that the settings satisfy your movement disorder complaints. Otherwise it is good to have minimum side effects, but this does not help much if you have to tolerate a tremor in your right hand and you cannot safely walk which were the main reasons for undergoing surgery. Added to that you have to take additional medication to suppress the tremor and walking difficulties. So it is really a trade-off. Yesterday I was with my neurologist who treated me in the last 20 years and he said no matter how much you increase the current you will have trouble if you go down from 180 to 130 Hz frequency.