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MIMILASTER last won the day on December 22 2016

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  1. I find it difficult to understand why most dopamine agonists induce weight gain in a large number of people. DBS also has weight gain as a side effect. How are these two opposite consequences possible ? Mireille
  2. Would you recommend, on an individual basis, replacing Azilect by Xadago for a trial period, to ascertain that it is not doing better than Azilect, or do you consider it's not worth the trouble and could even disrupt the subtle balance of meds that is sometimes so difficult to reach for longtimers
  3. Hi ! My experience with Requip withdrawal was the following : I had been taking 16mg/day of Requip ER for over 10 years. I tapered off over a period of eight months, staying several weeks at the same dose each time I moved down 2mg. I decided (with my neuro's approval) to stop taking Requip, in the hope that I would loose some of the weight I put on as a result of agonists intake. It will be a year next month that I quit Requip entirely and I still suffer from serious sleep disorder and I have not lost weight (although each time I decreased dosages by 2 mg, I could feel temporary effects on my appetite, but that lasted only a few days ..) So, in the end I am not sure it was such a good decision to quit Requip. Do you think I can still hope for positive results even a full year after withdrawal. Thank you for your precious help, Mimi
  4. Roger, A little more precision would not hurt. A pill /half a pill of which category ? 100/25 or 200/50 ? How much dopa do you need to ensure 3 to 5 hours of sleep ? I am currently revising my medication schedule and would be interested to know, for comparison purposes, in an effort not to overdo it.
  5. Just in case you did not see, Dr Okun answered a question from a forum member in Ask the Doctor as follows = " In my personal experience propranolol is not a good tremor medication for PD but works for mild essential tremor. It can help with anxiety and also as an aid to help with pubic speaking. I have had an occasional patient who says it helps with PD tremor. Watch out for low heart rate, depressive symptoms, and if you have breathing issues." I thought you might want to know .. Regards, Mireille
  6. May I suggest you seek advice from your neurologist as to gradual weaning off Ropinirole. Do not stop Ropinirole cold turkey ! Although you want to act quickly, you still need to follow certain dosage reduction. Good luck ! Mireille
  7. I’ve known this problem for years and only recently did I find a possible way-out. I used to put the blame on Requip, and although I also take Amantadine, the idea is to solve the problem whatever the culprit. I was offered a treatment based on both the Stimulus control therapy and the Sleep restriction therapy . “ The main goal in Stimulus control therapy is to reduce the anxiety or conditioned arousal individuals may feel when attempting to go to bed. Specifically, a set of instructions designed to reassociate the bed/bedroom with sleep and to re-establish a consistent sleep schedule are implemented. These include: 1) Going to bed only when sleepy; 2) Getting out of bed when unable to sleep; 3) Using the bed/bedroom only for sleep and sex (i.e., no reading, watching TV, etc); 4) Arising at the same time every morning; and 5) Avoiding naps.” The goal of the Sleep restriction therapy is to improve quality of sleep by forcing the patient’s sleep into a predetermined window, with bed time and wake-up time being the same every day including week-ends. This sleep pressure will favor a deeper and uninterrupted sleep. It is very difficult to fight drowsiness and the urge to sleep at 10 pm while your window for falling asleep has been set between midnight – 2 am but I have already seen positive results in only two weeks : I manage to sleep 4 hours and 30 minutes of uninterrupted sleep whereas I could previously only sleep no more than 2 hours in one shot. If you google Stimulus control therapy and Sleep restriction therapy, you will find lots of references which will provide you with better , more professional explanations. You don’t need a doctor to apply these methods based on very simple principles, although being coached is certainly a bonus ! Good Luck to you Mireille
  8. Hi ! I had initial DBS Surgery in March 2000, so almost 17 years ago. One electrode being not optimally located, I had a second surgery 2 years later. During these 17 years, my condition worsens of course and parameters were changed, not necessarily increased ( I guess you mean voltage) but also moved from monopolar to bipolar, from one contact to another. You have to take into account not only voltage but also frequency and pulse width. Sometimes modifying one parameter even slightly can have dramatic results, for better or for worse ! Sometimes parameters are good for a full year or two, sometimes it takes several months to get back to a satisfying situation. The number of parameter setting combinations is large and the key is to have a “programmer” who is willing to test all options until the best solution is found. You don’t want to settle for second best but want whoever is in charge of programming your stimulators to try his/her best to find the optimal option. Did my Parkinson’s evolve in these 17 years? Yes, of course it did (remember it is a degenerative disease). I would tend to think progression was slower than if I did not have DBS. It’s difficult to tell but that’s what my doctors say. It will be 30 years next April that I was diagnosed (at the age of 34), which makes me probably the most senior member of this group (senior in PD diagnosis and in DBS surgery). That does not give more value to my judgment but at least I have the necessary experience to put things into perspective. I have never questioned my decision to have DBS and would do it again if I had to. Good luck to you ! Mireille
  9. Hello Dr Okun, A sleep study includes monitoring of your heart. For DBS patients, I would think the neurostimulator has to be stopped for the night (because of the artifact created that compromise proper reading of ECG). What am I to expect from such an extended interruption? Will my tremors come back with a vengeance very quickly? I am a bit worried about this and wonder if you could reassure me. Thanking you in advance for your precious input. Regards, Mireille
  10. For your information, mine was replaced twice ; the first battery lasted 6 years and 8 months; the second lasted 7 years and 3 months. I was told the new one should last around 8 years. But this is no way a general estimate. It all depends on the amount of power required by your parameters. take care, Mireille
  11. Ollie, I would be most interested to hear what came out of your sleep study.
  12. It's difficult to say. It all depends on the context. I would try to stick to my career plan as long as I can but would go for lower responsibility, as soon as I notice that my performance sufffers from my medical situation. I would not want to be "caught unguarded" so to speak. But I realize my employment situation is very different from what you get in the States. Regards; mireille
  13. Maybe Nauseous feeling may come from the location of your lead. I remember when the surgeon was testing the leads location, there was one position where I felt immediately nauseous, then on another occasion my speech was impaired and on yet another it was my vision. They tested different locations until they found the optimal one. A change of stimulation parameters will probably solve this nausea problem. Regards, Mireille
  14. Dear Ollie, I am a young onset (at age 34) who will be “celebrating” 30 years of diagnosis next April. I walked the same path and can understand how you feel. I took medication (L dopa) right after diagnosis, as I preferred to enjoy my younger years to the fullest and indeed I had what is called a “honeymoon period” that lasted more or less 4 years. I then got pregnant and pregnancy did bring about a slight worsening of my symptoms. My only child has always known me as a “shaking mum” and this has never been a problem for him. As a matter of fact, he used to sit on his left hand, just the way I did, as I was trying to master my left shaky hand. I spoke with him about my disease when he was 7, as I was going to have deep brain surgery (DBS). He did not show any bad reaction, as he knew already I was not well. I think my medical condition contributed to his warm and outgoing personality, showing great consideration for other people’s predicament . He has a very caring nature and is always ready to help others. Although he is an only child, he has never shown any type of selfishness nor is he completely self obsessed. DBS put an end to my shaking altogether, so I am no longer a “shaking mum’, but as years went by, I developed other symptoms. Now my mobility is limited and my face has a mask-like appearance but that does not mean we don’t laugh together and he knows my stern looks don't mean I am upset or miserable. I also have a husband who is really devoted and caring. I consider myself lucky and cannot thank him enough for being at my side always. As far as letting people know at work, I can’t really help as I live in France and the situation is very different in Europe from what it is in the States. My employer knew from the time I was hired of my medical condition and accepted the situation. I was able to work until I reached 55. I then decided to retire (early) as I did not want to perform poorly. My medical condition did prevent me from certain job assignments (I was a translator in a European Union organization) like ministerial meetings, but all in all I had a very rewarding career despite Parkinson’s. I think I covered all questions you mentioned. Take very good care and give a big hug from me to your little girl (Three is a great age!). Regards mireille
  15. Yet another opinion ! I hesitated to add my “two euros worth”, but being among (if not )the most senior in this Guild of persons diagnosed with Parkinson’s (diagnosis April 1987 at age 34), I thought I could share my experience. At the time I was diagnosed there was no Internet, the patients associations were in their infancy and you could only rely on your neurologist. Information was scarce and what you read in inevitably outdated encyclopedia was not really encouraging. I was lucky enough to find a wonderful neuro, with excellent bedside manners (I love this phrase) who took time to discuss my options. I decided I would not waste my still young years being miserable with a shaky hand and took right away Levodopa (Madopar), which enabled me to enjoy a “honeymoon” period of 3 to 4 years. It gave me time to consider having a baby, who was born 26 December 1992. Pregnancy did bring about some worsening of symptoms, although the link between the two is hypothetical. Anyway, in 2000, I had deep brain surgery in Grenoble , France (where DBS was first initiated) and I am still around and doing relatively well after all these years. I never look back so I never tried to imagine what would have been my path had I delayed taking Ldopa. Exercise is certainly a good thing and this opinion is shared worldwide. But when you have a full time job and a family, it is most difficult for a Parkinsonian mother with a young child at home, to find time, and foremost energy, for a daily or even twice weekly hour of exercise. Everybody tries to defend their own vision and experience. ! You have now to make your opinion. Good luck and keep us posted Mireille