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  1. Today
  2. Internal Tremors

    Hi guys! I've been struggling with the whole body internal shaking for almost a year and I've been going to doctors and they didn't know what it is. Everytime I was trying to concentrate and think or even watch a movie the internal shaking became worse. I was thinking that I might have some kind of neurological disease. I tried many things to cure it like aerobic exercise, yoga, meditation, resting, walking everyday, using standing desk, ketogenic diet, Vitamins, drinking alcohol and lot more. Finally I've found that it might be elevated cortisol level for me the symptoms were: Internal Tremor Weakened immune system Slow healing of cuts, insect bites and infections A little weight gain Loss of emotional control Decreased libido I found simple almost complete cure using lift training - simple push ups, pull ups, squats, 3 times a week. My theory is that testosterone balance cortisol. I created the page with the whole story and my training schedule, I hope that it may help someone: http://internaltremorcure.pw
  3. Good morning!!

    Hi, our dear jb. We've missed you. Hope you are holding up okay. Please don't forget that we're here for each other and that means in good times as well as nor-so-good times. If this is one of those not-so-good times, we're available with open ears and caring hearts.
  4. Yesterday
  5. Nilotinib trial recruiting

    https://foxtrialfinder.michaeljfox.org/trial/4999/ Phase IIa trial of Nilotinib is recruiting at a number of locations. This is the leukemia drug that caused quite a bit of excitement a year or two ago. My MDS is one of the study doctors. I don't qualify, as it appears this trial requires patients to be on levadopa at least 30 days prior, but others here might be interested.
  6. Just diagnosed at age 40

    Hi amy2beth and Kat2017, Dx'd at 46, 3 years ago. As others have said, PD progression is generally slow, with young onset typically even slower than later onset. We are fortunate, I believe, in that we have time to come to terms with our situation. Michael J. Fox has some things to say about acceptance I find helpful (and hopeful). PD's different for everyone, but in my case, there's not been much change in symptoms over the last three years. I work full time and, at this point, expect to continue until full retirement. I'm also doing some things now (travel, etc), rather than putting off what I may have less ability to do or enjoy later. Exercise is huge--with the best exercise being something you enjoy enough to keep doing. When the initial shock wears off, there are a lot of opportunities to get involved in PD research, from surveys, to genetics studies, to clinical trials. For me, being involved in research feels like taking an active role in my future, rather than passively waiting for (or fearing) what's to come. Best, David
  7. Update to meds

    Hi Stump, Thanks for the update. The word-finding issue sounds a bit troubling--interested to hear what the exercises are and how helpful you find them. I lose a few words from time to time--post-dx, it's hard not to wonder if it's a PD thing. Shortly after dx, I participated in a research study that included a battery of cognitive testing, two days worth IIRC. Was able to share results w/ my MDS; we figured it would be a good baseline for comparison down the road. Clinical trial I just completed included a short cognitive test about every visit--a couple of drawing tasks, some memory stuff, name-the-pictures like you mention, and the 'every noun starting with the letter _ in one minute' thing. Really hate that last one--I assume I did well enough at it, as my MDS never said otherwise, but feel pretty incompetent under that kind of pressure, regardless. Gets the tremor going, too. Re: DBS. It may be a few years off, but closed-loop machines seem very promising. Basically, the stimulation is continuously modified, in response to what is going on in the brain. Some details here (more specific to cortical stimulation than deep brain, but covers that, too): http://www.sciencedirect.com/science/article/pii/S1388245714000376#b0170
  8. Update to meds

    Saw my MDS yesterday, along with the Speech Therapist. I wasn't supposed to see her again until mid-January, but I've been having problems with being dizzy when standing, been having a hard time sleeping sometimes, and meds have been wearing off and less effective overall. Plus, following my neuropsych eval back in April she had said at my July meeting that she wanted me to see the speech therapy folks due to the issues with word finding. Overall, not terribly eventful, but I did get my Rytary increased from 3x3 to 3x4 per day. I had been taking them at 8/2/8 so a six hour interval. I'll now be taking them, I think, at 7/11/4/9 which will give me a 4 hour interval during the work day, but I'll stretch it to 5 hours in the evening. We will see how that works out. For breakfast it might actually work out better. I seldom eat at home before going to work, so taking it at 7AM will mean that by the time I'm getting peckish at work I'll be at a good time to eat. Plus, the 8AM timing was tough on Wednesdays since I a standing teleconference with the India team from 7:30-8:30, and I'm usually in my boss's office for that call (boss and an India team rep in the office too), which means I either take meds 30 minutes early or late those days. This should avoid that issue. I think 11AM won't interfere too much with lunch since I can just wait until noon to eat, which I do anyway probably at least 3 days a week. Meds at 4PM likewise should be no problem with food since I rarely eat dinner before 6PM, and by 5PM I'd be good to go. The 9PM one might occasionally be a problem, as sometimes we don't eat until 7-8PM or so. But that will still be better than the 8PM med time from before since if we ate anytime before 7:30 I'll be OK. For dizziness she wants me to work more on hydration, including adding more electrolytes. We'll see if that cures it. Hope so. For difficulty sleeping she was recommending Sleepytime Tea, or chamomile tea/herbal supplements, and/or melatonin. She also thought the additional Rytary would help. Thankfully she was in agreement that anything stronger was uncalled for. The speech therapist had me do some additional tests for word finding. One of the things she had was a book with pictures and I had to name the object. Started off great, then got to some that I really struggled with. The harmonica, beaver, paint, and couple others I'm not recalling I really stumbled over. The picture of the paint board I could never come up with the name until she flipped it over. Then she had me do the "every word (not proper nouns or different forms of the same base word) starting with the letter S" in one minute. Struggled with that about like in the neuropsych eval. Got some exercises from the speech therapist to try to help out with that. As I mentioned in a DBS thread, I stated that I assumed at this point we were still several years away from even beginning to discuss DBS. She agreed with that, and said that even if I was getting close to that point, which I'm not since the meds are working well and I don't have any dyskinesias yet, that she would recommend waiting if possible for another 2-5 years. There are a ton of advancements coming down the pike for DBS that will make it less invasive and better overall. Currently battery packs and controllers are implanted in the chest or abdomen in operations that, at least in the USA, are typically done under general anesthesia. Average life for the battery packs is 5 years, so if you have DBS done at, say, 45, you're looking at an expectation of 9 total battery packs if you live to 90, so the initial pack plus 8 replacements. Some will need more, some less depending on a lot of variables. But even you only need 5, that's still a lot of surgeries to replace it. One advancement she said is in development is a battery that can be placed under the scalp, and it sounded like it was intended to last substantially longer, possibly long enough to never need replacement in your lifetime. Plus, with now I think 3 companies with FDA approval for DBS systems (IIRC they're Medtronic, Boston Scientific, and St Jude) they are all working on improving leads, lead placements, control systems, programming, and so on. We are likely in an inflection point for advances in DBS such that waiting, if tolerable, is likely the best plan. Eventually things will taper off in terms the rate of advancements. I'm hoping that we'll be in that phase of the development curve by the time I am ready to seriously consider DBS.
  9. If you know a middle school or high school teacher, please share this with them. In mid-January I will start my one month personal mission to Uganda to provide complementary and alternative health care for persons suffering with Parkinson’s disease. Five times a week I will publish a brief video on YouTube. It will show a wide variety of people, locations and medical conditions and how to provide treatment when patients have no way to purchase medication. I think the videos will provide material for a wide variety of discussions among students and teachers. Please go to my website for more information. www.pdchallenge-uganda.org.
  10. What caused your Doc to suggest DBS?

    You're right, I missed that. However, she's in Europe where they'll do surgeries under local or regional that docs here won't do unless under general. I know in Europe they do a lot of open incision hernia operations under local, whereas here I asked about having mine done under local and the surgeon looked horrified at the idea. Said he'd only do it if I was under general. My understanding is that in the USA the standard is to do a battery replacement under general.
  11. What caused your Doc to suggest DBS?

    Stump, You need to pay closer attention to what Mireille said. Her battery (IPG) was replaced under local anesthesia. Dave
  12. Handwriting changes

    Hey Bill, thanks for your insights. You're not the first person with PD to suggest that my symptoms closely mirror their own and that I should try to get a dopamine med test. I just talked to my MDS two days ago and he wanted to know how upset I was by the thumb tremor and could I wait until after the Datscan to try Sinimet. I told him I could wait since the test is in less than two weeks. I'll get a CD of the results on the day of the test, and the report the following day (if I drive back to Georgetown University to pick it up/or by mail a few days later.). Depending on what the report says, the hard part will be waiting for the follow up MDS visit in mid December. He als wants to look at a 2015 brain MRI, a cervical spine MRI and another blood test. So this is a process. In the meantime my hand is hurting everyday. -S
  13. What caused your Doc to suggest DBS?

    That is great that you're getting 7 years or so as an average life for the battery pack. And that it may extend longer. Still, given the choice between having 5-8 battery replacements under general anesthesia vs 0-2 under local anesthesia I know which I would pick. In your case, of course, it was a choice between DBS or no DBS. We are lucky that folks like you went through that back then so the technology would exist and be at a stage of rapid advancement by the time we start to consider needing it.
  14. tip de la semana

    Estimados amigos, Esta semana le escribo en preparación para la celebración de Thanks giving. El estrés delas fiestas puede causar que los sintomas de la enfermedad sean más notables. Asegúrense de continuar con una rutina adecuada para dormir, alimentos y medicinas. En ciertos pacientes el tomar las medicinas con comidas que tiene un nivel alto de proteínas puede interferir con el efecto de los medicamentos en particular el efecto de la levodopa. Traten de tomar el medicamento una media hora antes de los alimentos. Si es necesario tener algo en el estómago, una bebida carbonada (soda), galletas o una ración pequeña de fruta es adecuado. Si van a viajar esta semana, no olviden de tener los medicamentos a la mano. Saludos a todos, por favor envíen sus preguntas o comentarios. Adolfo Ramírez Zamora MD
  15. Handwriting changes

    Superdecooper, I have Dementia with Lewy Bodies, which is a combo of parkinson and dementia, not nice stuff. So I not expert on parkinson, but I have learned much over the past year. For me, I had almost all the things you mention, and when my neuro put me on Sinemet, the symptoms improved across the board. Because Sinemet makes cognitive stuff worse, I had to cut back on dose, but Sinemet is still a savior for me. The help came within a day of starting, as in right away. I can't see why one of your doctors don't just give you a trial run to see if it helps. If it does, then you have parkinson or worse still DLB. Others hopefully will tell you if this is a good idea or not, because I don't know, but it seems so to me. By the way, I doubt an orthopod knows much about Parkinson's, other than to immediately refer you to a neuro. Good luck to you. Using a hand recorder is the only thing I can think of to help the taking of notes, and you are already in the know on that. I would hate to use one myself, but I am 67 and I came up using hand scribbled printing that only I could read. I not a reporter or jounralist like you, but a lawyer who had to take quick notes so I could cross examine witnesses in a trial. I can't think of how I would have been good at my job if I could not have taken notes. I used to have a good memory, but not that good, and certainly no good at all now. Good luck. Bill.
  16. What caused your Doc to suggest DBS?

    Oakman, Thank you for your reply. I hope all is well and it sounds like it has been a real help. Blessing Adam
  17. What caused your Doc to suggest DBS?

    Stump, Thanks for the Intell. I am hoping that if and when the day comes for me to do a surgery that new and more capable technology is around. I am guessing and hoping that it will be another 5 to 10 years before I will need it. Lately I have been getting some terrible dystonia in the evening before bed time. Most likely will need to adjust my pill scheduling and dosage. I will be seeing my MDS in December. It just got me thinking, what was it that others were experiencing when they and their doctors decided on DBS. Mireille, Thank you for your words as well. I hope and believe that I will have many good years. Your stories I read on here give me more hope that I will be just fine. I hope to get back to France sometime soon. J'aime la France. Bonne journée
  18. Good morning!!

    Today, I fill my lungs with the sweet life of morning and hope. -S
  19. Handwriting changes

    So I'm facing the reality that my right hand is shrinking into the shape of a painful clamshell and as that happens my right thumb starts up with a resting Tremor just like my index finger. I can short circuit that process by moving my hand. But, in general my right hand is very painful and cramped. The MDS said if the Datscan comes back with a dopamine shortage in December, he can give me PD meds that might address this dystonia or he might also consider Botox, but those shots are a process, he said. i read other posts on this forum with folks talking about their hand shaped like a claw. I can relate. in the meantime, I've figured out that if I think of writing as artwork and not cursive script, my handwriting is way more legible. It takes along time to write but at least I can read it. This wont work too well professionally, because taking notes as a journalist requires speed writing and that's totally out. But thinking art rather than signature is so strange. But it's working for now. -S ps... just had an idea... there's a name for drawing words as art...stenography.. I wonder if I could learn shorthand. I'm going to look into that
  20. 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
  21. What caused your Doc to suggest DBS?

    Adam - got some intel today that should be of interest to you. I had a meeting with my MDS. I said my DW would want to know, but that I assumed I was still several years away from discussing DBS. She said that, never mind the fact I'm not at a stage to seriously consider it anyway, even if I was she'd council to wait a few years if you could. They are working on developing a battery that doesn't get implanted in the chest or abdomen, but under the scalp. It would be recharged by wearing a special helmet. Sounded like it would be a lifetime battery (or WAY longer than 5 year replacement windows anyway). Biggest bonus to that is that you don't have go under general anesthesia every 5 years for battery replacement, plus dealing with recovery and scar tissue from perhaps as many as 10 replacement surgeries if you live for 50 years after initial DBS surgery. Something to think about. I liken the consideration for DBS to being kind of like Scott Adams (creator of Dilbert) explains the issues surrounding doing anything about global warming. It boils down to economics in his essay, but a big point he makes is about the cost of doing anything. If you act now it may cost a whole lot more than if you wait for better technology. By waiting you can see what technology develops that might work better/faster/cheaper than what is currently available. WRT DBS surgery I think we're in or very close to an inflection point in the development of the technology involved in DBS. If you can stand to wait another 3-10 years it might be massively beneficial to do so due to rapidly advancing technology solutions to battery issues, control systems development, electrode design and placement, and so on. After all, part of his essay was also that eventually you get to the point that continuing to wait causes costs to increase again, and if you wait long enough then it's impossible to accomplish anything as it's too far gone. In the case of DBS, being too far gone means you've risked out of eligibility entirely, perhaps due to dementia, age, or other factors.
  22. Disability

    My husband applied for disability when his doctors told him he needed to quit work. He took a short term disability (was supposed to be five weeks and turned into five months) where he tried new medications, completed "Big Therapy", completed "Loud" Therapy, and then went back to work three days a week but symptoms got so bad he wasn't doing well at work and could barely function when he wasn't working. His disability applications went smoothly (his company's insurance carrier, a private policy we'd had for a long time, and then Social Security). Some friends who had been through the process helped us a lot (keep good records, be consistent in your answers, and follow up). We did not use a lawyer. We had consulted an employment lawyer for another reason who gave us excellent advice on being sure we had the full plan description from the company's carrier. His company did provide a consultant (Advantage 2000) to help with the Social Security application as they could decrease his benefits as soon as he qualified for Social Security. One of his doctor's gave us the best advice, he said that when they asked why he couldn't work to say "My doctor says I cannot work". He said to simple repeat that again and again, if needed. Another doctor suggested we use these words when talking to the interviewers who don't now anything about PD, "Parkinson's is a progressive neurological disorder, there is no cure". Because he had the "trial to work" after the short term disability, I think it helped his applications go through easily. The fact the school does not feel she can continue to substitute teach probably will be an important factor. We would write out talking points before each phone interview and return to those pretty much in answering most any question. I think for us, the hardest part was focusing on what he couldn't do because we always focus on what he can do. We would sort of change directions when filling out the forms and going through the interviews and then switch back to our more positive view. We learned that his MDS had documented at the very first visit, seven years earlier, concerns about him being able to continue employment (soft voice, etc.) and in subsequent visit notes as well. That probably helped too. We did find the doctor's concerns aligned more with the employer's possible concerns (ability to walk and potential for falling) than the things that were more troubling to us (like fatigue) so those were the ones identified in the applications. Outlining job duties and how PD interfered was important too. Good luck.
  23. Last week
  24. Just Interesting Things about This and That

    This is such a fun, fun video to watch. Hey Ginger/LAD/Muffet--You and your DH, Fred, are in it. (Did you two time travel?)
  25. Good morning!!

    Hi Jb and everybody... All is good here..Seán's graduation went well thanks jb, and i have started a creative writing course so far so good my hand writing is not so good now so thank god for pc's... Getting set for Xmas here..already playing Christmas Carols in the shopping centre here..getting earlier every year..anyway take care folks.. Em
  26. Good morning!!

    Good morning Everyone. Hello Marcia. I hope that you have a Good Neuro appointment. I can't imagine not being on drugs. I would be rooted to the ground.. Good luck with that!! Hey Linda, wazzup? How is Buffalo Ellangel? Got snow on the ground yet?. Hi Peace. How is the cleanup going? Hi Dianne,Bard, and Em. Have a good weekend. Jb
  27. Anesthesia and C/L

    Waywrd, Thank for the info. I just answered another question on a post about, "if your pharmacy is out of your meds," that you may want to read. Once again, thank you
  28. Mylan C/L On Back Order?

    Most every pharmacy has it's own warehouse to get medications from, this is their main source of medication. Then, almost all pharmacies, except independent pharmacies, have a secondary wholesaler, which is usually McKesson or Cardnial. Oddly enough, while I was writing this I received a phone call from my pharmacy telling me my generic Sinemet CR 50/200 by Mylan, with a 3 month supply (quantity of #270) was ready to pick up. I asked him to order another 6 bottles of 100 tablets (6 extra months for me) of the Mylan brand, and he was able to. I talked with a friend of mine at Walgreens last night and he told me it was on backorder. Both of them use McKesson as their secondary wholesaler. This usually means that it is on a "first come, first serve basis. Since this appears to be the case, ask your pharmacist to check every morning, and night if they are willing to, to see if the generic you need is in stock Make friends with your pharmacist, it can go a long way. To me, all of my customers were my friends. I hope this helps and please keep me posted.
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