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Everything posted by MIMILASTER

  1. Questions for next Neuro visit

    Dear Claire, I would suggest before you go any further that you submit your case to Dr OKUN in the forum Ask the Doctor on this site. Dr Okun is a Movement Disorder Specialist who could point to you which aspects in your history could confirm or exclude Parkinson's. So many doctors, even neurologists I understand, do not take Parkinson's into consideration when dealing with a young person. I was lucky enough to be diagnosed by someone who understood at the very first appointment that I was probably a "juvenile Parkinson's". I was 34 at the time. Dr OKUN is a very knowledgeable Doc with a worlwide reputation. He is highly devoted to the Parkinson's community. If he thinks Parkinson's is a possiqbility, then If possible, go to a Movement Disorder Specialist and ask if it is indeed the case. Good luck, Mireille
  2. Botox injections, anyone?

    I 'm having botox injections for feet dystonia (big toe rising up and foot curling sideways) every four months with satisfactory results. Make sure these injections are conducted by proper expert ( not just any neurologist) under electromyography (which assesses electrical activity of muscles) or better still sonography. Outside its cost (very expensive in France, although covered by insurance) I don't see any negative sides to botox injections. The procedure is not totally painfree but the pain is really minimal. It may depend on injection location and on doctor's skill or experience. Good luck Mireille
  3. other surgery with DBS

    I had total knee replacement surgery 10 years ago. Had my knee surgeon talk to my neurologist before surgery. Restrictions on shortwave , microwave and ultrasonic diathermy were discussed. At the time, the type of neurostimulators I had did nor have a remote control so there was no way I could turn myself off. Obviously it was safe. With my new pulse generator provided when I changed 4 years ago, I have now a remote control and I switched myself off when I had bladder stone surgery last July. One aspect I wanted to underline is the nasty consequences that strong antibiotics treatment for knee surgery had on my Parkinson’s. The subtle balance betwen stimulation and meds was completely destroyed and took me several months to regain. Regards, Mireille
  4. Requip Side Effects ...I'm so sick!

    I started Sinemet right after diagnosis at age 34 (some 31 years ago) and I am still taking it with satisfactory results. As already suggested by previous members of this forum, you can take Domperidone to help your stomach pains, but I for one would not recommend Requip. It made me live in a "haze" for so many years. I am glad I stopped.
  5. Music and Parkinson's Disease

    It's Frédéric Mompou , a Spanish or rather Catalan composer, who lived in the XXth century.
  6. Good morning!!

    Hi JB, Let us know in due time how your assessment in Toronto went. My best wishes for a Happy New Year to you and everyone on this forum. Mireille
  7. Just diagnosed at age 40

    Hellow Kelly Ann, It must be difficult to be taken as a drug seeker when you know there is something wrong and nobody understands what the problem is. A good thing you changed primary doctor and found a good one. It takes time to adapt to meds, some people have problems, others don't. Hang in there, your body will eventually adjust. The pain and energy issues are often linked to undermedication. But I am no doctor, so I would suggest you submit your question to Dr Okun in the Ask the Doctor part of this forum. Also, one member of this forum is a Doctor and a person suffering from Parkinson's. Her name is Christie. It's been a while since we last heard from her. If she reads this, maybe she'll take time to provide suggestions. She is very knowledgable and helpful. She is a young-onset as well. Take care, mireille
  8. Just got the news 😕

    Hello BlueLion, Don't say you're sad for your young kids. For one thing you are still young and chances are you will witness new discoveries (meds) /maybe a cure ?? in your lifetime. Second, in my experience, my son (whom I had at age 40, some 6 years after diagnosis ) has grown up with a PD mom and has evolved into a very considerate person, always there to help others in difficult situations and does not seem to have been affected by his mom's disease. He will turn 25 on December 26 and is a very positive and successful young man. On April 1st last, I celebrated my 30th anniversary of diagnosis. Am still around, doing reasonably well (I had surgery in the meantime). PD is not a life sentence. You can keep an almost normal life (except for taking meds). So enjoy life and treasure every moment. Take care, Mireille
  9. What caused your Doc to suggest DBS?

    This awful experience serves as a good reminder : when traveling, I always carry a large part of my meds in my hand luggage and the rest in my suitcase (checked baggage). If my baggage is lost, I always have my meds in my hand luggage, and conversely. I always travel with more meds than necessary. And I always take a doctor's prescribtion just in case. Having dbs does not mean that you will be medsfree. Most people who had DBS still take medications but far less than prior surgery. Take good care, Mimi
  10. What caused your Doc to suggest DBS?

    I cannot quite understand why it would be horrifying to operate on local anesthesia. Almost all the surgeries I had were local, including C section and total knee replacement. You recover more quickly having only anesthesia for the lower part of your body. Your breathing system is not involved and that's what makes a difference for recovery. For battery replacement, a simple series of shots in the area where the IPG is located is sufficient. It's is a very quick procedure. The skin is cut always at the same place so there is only one scar. It is really a simple gesture for the surgeon as the IPG has already found its place and you only need to take the old one out and put the new one at the same place.
  11. What caused your Doc to suggest DBS?

    dear Stump, Just want you to know in my experience, battery was replaced the first time after 6 years and eight months, second time 7 years and 6 months and the current system is scheduled to last a minimum of eight years, maybe nine. According to a study " There are many factors that may influence battery drain. These factors include neurostimulator manufacturing tolerances, battery usage, battery chemistry, tissue impedance, interpolation error, usage patterns, and self-discharge. " The 5 year window is an average that may not apply to you, especially if like me you undergo DBS while still young. IPG replacement was done each time under local anesthesia, not general. I had DBS in 2000, I was 47 and had been diagnosed 13 years prior. Regards, Mireille
  12. Just diagnosed at age 40

    Dear Amy2beth, Dear kat2017, I too am a young onset. Was diagnosed at age 34, some 30 years ago. I took Ldopa (Modopar) right away, as I wanted to enjoy my "young years" to the fullest. An enjoy I did, I even had a baby at 40. I am still taking Ldopa so don't believe those who say it only lasts 5 years. I also had DBS surgery in 2000 and 2002. Being diagnosed with Parkinson's is not a death sentence. You can lead an almost normal life (with reasonable expectations of course). I worked until I was 55, but enjoyed a very favorable job environment in Brussels (Belgium). I have the chance also to have a very dedicated husband who cares for me. I am sure others have provided good advice ( i haven't read all contributions). Welcome to the club. Come and join us in our fight for the cure ! Mireille
  13. Good morning!!

    Hi JB ! Going to Toronto for DBS is the best option you could think of ! The Toronto team with Lozano, neurosurgeon, and Lang, neurologist, is known worldwide for its early involvement with DBS procedure. I know someone who had DBS for Parkinson's there as early as 2000. There is also this great Doctor from Italy, Elena Moro, who was trained in Grenoble, France. You couldn't think of a better team. I wish you all the best for the forthcoming DBS procedure. Mireille
  14. I wonder if there is a direct link between vivid dreams or REM sleep behavior disorder (RBD) and dementia. In other words, if we have RBD or frequent vivid dreams, are we at a greater risk for dementia ?
  15. dbs overstimulation and is explosion possible

    You cannot turn up your stimulator as you wish. Your are allowed to so only within a certain range defined by the doctor or whoever is in charge of finetuning the stimulator's settings. In France, this task is the responsibility of a neurologist specially trained for that purpose. I understand this is slightly different in the States but in any case you will never be able to turn up stimulation further than what has been allowed. Hope that will allay your fears. Mireille
  16. weight loss and medication ajustments

    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
  17. Xadago

    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

    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
  19. 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.
  20. Recently diagnosed

    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
  21. Ropinirole dosage to induce hypersexuality?

    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
  22. Sleepless on Amantadine

    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
  23. Sleep study and DBS

    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
  24. 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
  25. Dear Dr OKUN, I would like to know if seeing flying flies in front of my eye (eye floaters), which I understand is quite common for older people, could be an early warning sign of propensity to hallucinations? Regards, Mireille