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MIMILASTER

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MIMILASTER last won the day on December 8

MIMILASTER had the most liked content!

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About MIMILASTER

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    near Bordeaux (France)

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532 profile views
  1. 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
  2. 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
  3. 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
  4. 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.
  5. 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
  6. 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
  7. 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
  8. 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 ?
  9. 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
  10. 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
  11. 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
  12. TAPERING REQUIP

    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
  13. 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.
  14. 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
  15. 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
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