Jump to content


  • Content count

  • Joined

  • Last visited

  • Days Won


Everything posted by MIMILASTER


    Good morning!!

    Dear JB, Your talent as a writer and your wonderful sense of humor will always help you go through the most uncomfortable experiences. To be able to see a situation from a distance can be a lifesaver. The first part of the calibration procedure, defining a “no fly zone”, can indeed be an upsetting experience, as you watch someone trigger undesired feelings in you ; I had ungovernable mirthful laughter, that made a fool out of me and, what was very unsettling, a point where I was totally incapable of voicing one sound. Totally mute ! But you have been through this and now you are entering a new phase. It may be unpleasant and long, depending on how easy your case is (mine is still difficult). It would certainly be more convenient if you didn’t have to travel such a distance to see the DBS team, but things could be worse. I live 120 kilometers from the Bordeaux Hospital where I receive follow up treatment, which I find decent enough. It is going to take time, you know it, but it’s only normal you get impatient, after waiting for so long. It is certainly not fun to have to suffer the stares from not very thoughtful train riders and I can feel you were very uncomfortable and in physical pain as well. But you managed to turn this unpleasant situation into a funny story. Chapeau bas, mon ami ! Keep faith and Keep us informed. Regards, mireille

    Good morning!!

    Hi Emma, Does that mean you have been enjoying same beautiful weather like we had the last week of May ? IRELAND is such a beautiful country. You should all go visit Ireland, guys. I fell in love with your country, Emma. Hope JB is passing his stimulator's "calibration tests" with flying colors. Mireille

    DBS Programming Sessions Per year

    Normally every six months, more frequently if need be Mireille
  4. Thank you, Dianne, for this very useful information. I had never heard of websites such as patientslikeme. It sure will be appreciated by all. Mireille

    Good morning!!

    Dear JB, I am glad to read you are doing ok, although I sense some impatience on your part to finally get started with programming. It is indeed a different procedure from what is generally reported. But it is definitely a better idea to wait until all side-effects from surgery have subsided before starting sampling the various options available for stimulation. You reap the benefits of years of experience with previous patients. If they try certain settings while the effects of surgery are still there, they may draw false conclusions from these initial attempts. That’s how I analyze this difference in procedure. In my case, stimulation was started within two weeks after surgery. I think the support of someone who has been operated by the same team and went through the same procedure is indeed the best assistance you may get. Do not hesitate to ask questions to the doctors who will in charge of programming your stimulator. Have faith, everything will be allright. Take good care of yourself and keep us posted ! Mireille

    Drug Interaction

    Hello Mark, I suppose the same applies to osmotic laxatives ? Regards, Mireille

    Good morning!!

    Funny, EM, I am currently visiting your country ! I am in Cork. Love Ireland, such friendly people. mimi

    Good morning!!

    Maybe you are going top fast. You should rest, rest, rest . Hang in there ! You ´ll make it big hugs Mireillle

    Good morning!!

    I had a first DBS in March 2000, but one electrode was suboptimal. So I had resurgery on that side in 2002, which improved the result quite dramatically. Resurgery was done in Grenoble by the Benabid team.

    Good morning!!

    hello Jb CONGRATULATIONS ! You have now joined the "International DBS Club". I am delighted to hear that you are doing well. I remember how strange it is to feel good at last and not be able to rejoice totally for fear it is only temporary and due to lesion effect. Good for you if you can sleep even if it is during the day. Could your shoulder problem be a consequence of feeling tense during surgery. It would make sense that keeping the same position for so many hours (my first DBS was 13 hours !) would create tensions in your body, in your case the shoulders. Sleep as much as you can and keep us posted. I am so happy for you. Regards, Mireille

    Good morning!!

    JB, I wish you all the best for May 8 and May 10. I will be thinking of you all day (won't forget the 6 hour time difference !). I am sure you will be doing fine. Remember you are under the best hands you could think of. i'll send all good vibrations possible to benefit you and the operating team. Keep us posted on how you are doing. Big hugs. Mireille

    Good morning!!

    Hi JB, It would be nice if you did not have to wait for DBS as long as initially scheduled. Once we have made the decision to have surgery, we don’t want to wait for ages ! We would prefer to have it done as quickly as possible. At least that how I felt. One thing you have to be ready for is the « micro lesion effect » created by the insertion of the electrode into the brain. Right after surgery, you feel great. Coming out of the surgery theater, I remember feeling ready to go out and eat at a restaurant (surgery lasted 11 hours so I was kind of hungry). BUT this overwhelming good feeling is only temporary. This can prove very disturbing and disappointing as you’re made to see how well you can feel, only to fall back to a less favorable state. This great feeling can last a day to a full week. [ I'm not too sure about the average duration, you would need to ask the DBS team ] So don’t be overexcited right after surgery you may feel a lot better than you will in a day or two. BUT the good news is : there is a positive correlation between micro lesion effects and results /improvement degree. JB, I enjoy reading your posts detailing your "activities". THe maple syrup season brings back fond memories of a year spent in Ottawa, some 40 years ago, the "sugar shacks". That was so much fun! Take good care, Mireille

    Good morning!!

    Hi JB, I am following you on your path to DBS STN. I know these last few months will seem like years, as you are so anxious to have it over with. I would recommend you start a diet as most people put on weight after DBS surgery. I did not heed my doctor's recommendation as I had never had any weight problem ever in my life and did not feel this caution was directed to me. That was a mistake. Weight control is a constant battle ever since surgery. It is important you take this into consideration. Let us know when will D day be so we can send good vibrations in due time and in the right direction ! Take good care, Mireille

    Lithotripsy and DBS

    Hi Dr Okun ! I thought whenever you are required to turn your DBS off, you were also supposed to turn the voltage down to zero. Is this requirement still valid ? Regards, Mireille

    Good morning!!

    Just wanted to give you yet another reason to believe you are in the right hands at the Toronto Western Hospital for DBS. Here is one of their latest publications0 Take care, Mireille Mov Disord. 2018 Mar 23. doi: 10.1002/mds.27359. [Epub ahead of print] A 21-year retrospective study of the Toronto Western Hospital deep brain stimulation cohort. Cubo E1, Rajalingam R2, Fasano A2, Munhoz RP2, Lang AE2, Calvo S3, Marras C2. Author information PMID: 29570864 DOI: 10.1002/mds.27359

    Good morning!!

    Hi JB !

    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

    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

    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

    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.

    Music and Parkinson's Disease

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

    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

    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

    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

    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