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Everything posted by janvier

  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. 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.
  8. 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.
  9. 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.
  10. 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
  11. 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?
  12. 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.
  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.
  16. A year& a half after dbs

    I had bilateral STN in 2013. The programming done at the start did not work as it should. Then one year later my Neurosurgeon acting upon my continuous complaints attacked the problem again and he had to start right from the beginning and reprogrammed the IPG. Needless to say we had more than 25 sessions of each one hour. Finally my two big complaints were solved. The leads are in the right place, but good programming is essential. Now I sleep more than usual and have a weaker voice. There are some cognitive problems and sometimes nightmares and oedema in the feet. But with the help of speech therapy, brain exercises, sleep regulating drugs and tight socks my Neurologist and I think that I can win the battle against PD but not the war. I hope this helps.
  17. Voice weakness

    You said diet. What kind of a diet is that. Could you be more precise?
  18. Voice weakness

    I wish to contribute to the discussion. I had my first DBS in 2006 and second in 2013. The first was unilateral VIM and the second bilateral STN. So practically speaking I have an experience of 11 years. In both cases Let side in the first and Right side in the second case I came to a point that I could not work anymore. My life became miserable because of unstoppable tremors. I had reached almost the ceiling of daily intake of Levodopa.and Requip with of course all kinds of side effects and at that point I had to decide either continue suffering with disease getting worse and worse or to be liberated from tremor in half a day. I agree with what Waruna01 has been saying that is less is better both for medicine intake and low pulse width, frequency and current. Yes there are some side effects such as weak voice. But think of the case where you are tied in an armchair shaking continuously and not able to drink or eat anything without help. The result is you go for the DBS even if you know what may happen as a side effect. So the crucial question is when to go for it. I'll give you 3 criteria: If you can not work anymore, if for daily living tasks you have to rely on other people and if you are young enough to support the brain surgery. Every solution has plusses and minuses. You have to compare them and make the decision yourself. In principle if the doctor after a medicine loading test can decide whether you will profit from DBS. After some general tests they can tell you whether you can support the surgery. Then the rest is your decision. In the past ie 2006 a unilateral VIM took about 6 to 8 hours to complete with tunneling the leads under full anesthesia and so on. Now a bilateral STN takes about 3 hours. Just to give you an idea of the huge technical development. At the hospital I have seen people brought in armchairs and seen the same people walking out with a regular pace. So good luck.
  19. Voice weakness

    Thanks Waruna01 for the info. The meds are drastically reduced after DBS. Currently the daily intake is Myrapex(Pramipexol) 1.5 mg, Azilect 1.0 mg, Amantadine 50 mg, Inderal 2 x 1.I am not taking any dopamine. I have observed something bizarre, my involuntary movement in the left leg seems to have evolved into tremor. I wonder whether anyone else has observed such a case.
  20. Voice weakness

    Quite right waruna, being an IT expert I can't agree more. The books "the Mythical Man-Month' and "Programming Art", I don't know whether you have seen them, illustrate this fact although a large party of the public think it's a science or some kind of magic only known by the high priests of technology.
  21. Voice weakness

    Thanks for all that info waruna01. As I said at the moment I am browsing the internet to find as much info as possible for my upcoming programming sessions. If problems persist I shall seriously consider that option. Thanks again.
  22. Voice weakness

    That is good news. When you say works well does it mean that her voice got back to normal and articulation also became normal? Thanks coacht.
  23. Voice weakness

    Yes Waruna01 in fact to stop my involuntary movements on the left side the current there was reduced down to 0.1 mili ampers and eventually the Neurosurgeon changed the electrodes (0, 1, 2, 3) from 01-02 to -02 +03 which as he put it is hitting beside the target but reducing the involuntary movement to a tolerable level. So this may be the reason for the hallucinations and bad dreams. I am currently assembling all this info and after a discussion with my neurologist next week I will start having a revision of of my settings with a different programming team. As I am residing in Europe it is not easy task to go and see a programmer in the USA and stay at least a month to get results. However if it is worth the journey I'll do it. Apart from Sierra Faris is there anyone else that you can recommend. Thanks.
  24. Voice weakness

    Polyparkie you said voice therapy helps. Thanks for the tip. I'll go with it. Can you tell me how many sessions you had with the specialist and are you still practicing at home. How much time has gone by since you finished the last session assuming that you are still OK. Waruna01 again the info you have given is very important. Since my DBS I am also having nightmares and hallucinations. Is DBS the culprit and if yes will the low frequency help? Thanks.
  25. Voice weakness

    I find this information to be quite important. The numbers given for speech frequency < 130, pulse width =60, bipolar stimulation do they have any impact on the tremor which is the main purpose of the DBS apart from a few other positive effects. As far as I know it is used in most cases and involves two electrodes out of four namely 0,1,2, and 3. These are coupled one being positive and the other negative. So I assume if 130 and 60 are used this will affect the amplitude requiring more energy in terms of miliampers decreasing the life of the battery. Depending on the case it may or may not be worthwhile. In any case you are quite knowledgeable in the subject. After a certain point we at least have to know a little bit about the technology of DBS. Otherwise we are at the mercy of Neurologists and Neurosurgeons, who either do not tell us the whole story or they themselves do not really understand neither the technology nor the implications.