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Mihai last won the day on November 16

Mihai had the most liked content!

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About Mihai

  • Rank
    Advanced Member
  • Birthday 08/28/1968

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    Cleveland, Ohio
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1,058 profile views
  1. Just diagnosed at age 40

    Hi amy2beth, I was diagnosed 16 years ago at the age of 33. I am now 49 and doing really well. I am fully independent and still working full-time. I have been on C/L the entire time (currently on Duopa, a pump infusion of C/L...it works great at managing both the symptoms of the disease and the side effects of the medication). My main issues are bradykinesia, rigidity, gait/balance issues, and dyskinesias (the result of long-term C/L use). Don't let the PD diagnosis get you down. It is true that we all progress differently; however, young onset PD is usually a slow progression overall. I have two children (9 and 13) and a wonderful wife. PD just becomes part of who you are, but it is never the sum total of who you are. You will learn how to adapt and live with it. We are here for you. It's not always easy...good days and bad days... Sometimes I am strong and can offer advice. Sometimes I am weak and need a shoulder to cry on. So much is happening in the PD world...new medications and treatments due to vast research. Hang in there. Lean on us as you need to! Peace and blessings, Mihai (Michael)
  2. Coffee intake triggers shaking

    Hello GeorgeNW, I noticed that coffee was horribly exacerbating my dyskinesias, so I decided to switch to decaf. That helped tremendously. To me, it appeared that the caffeine was the culprit. Mihai
  3. Duopa Pump Users-

    Hi Drummergirl, I have heard that some folks have had a hard time with the insurance covering one part, but not the other (gel and pump device). It seems crazy, since you kinda need both for the process to work! I think eventually they will come around. It's alot of money each month, so I'm sure the insurance companies are not too thrilled with this new treatment option! Just keep at it...hopefully, they will see the light! The kinking and knotting with my tube had to have been taking place at nighttime. Because the bumpers were not up tight against the skin (which is a bit uncomfortable), I think the tube was twisting on the outside, thus causing it to twist on the inside until it would get into a position that would not allow the gel to flow. The simple fix was medical tape to secure it on the outside. I have had my current tube for about a year, so something is working right! Peace, Mihai
  4. Bible Verses....

    Nice topic! One of my favorite verses is found in Isaiah 41:10: "Fear not for I am with you; be not dismayed for I am your God; I will strengthen you; yes, I will help you; yes, I will uphold you with My righteous right hand." I can't be worried and upset when I remind myself of that verse! Encouragement to each of you... Mihai
  5. Duopa Pump Users-

    Hi all... I went through the clinical trial for the pump (it was a year long trial). Three years later I still have it and I love it!!! It is so much more effective than the oral medications and, in many ways, has given me my life back. It does require some care with the peg-J and all, but in my opinion is well worth the extra effort. I had alot of trouble with the tube kinking and knotting internally, but I finally figured that out...after 5 endoscopies to replace the tube, I started taping the tube to my stomach during the night so it cannot twist. That solved the problem! I get my medication and supplies from Accredo--a specialty pharmacy (during the trial, it all came from Pharmacy Solutions, but changed when insurance took over). It is covered by my insurance and I have another provider that pays my insurance deductible and co-pays, so I basically pay nothing for the pump or the medication! I am not sure why more people are not looking into this option...it is more invasive than the oral meds, but it is so much better. I became involved as a step prior to considering DBS more seriously. It was a great option. Good luck to each of you...I hope it works well for you! Peace, Mihai (Michael)
  6. Newly Diagnosed and scared

    Eat more bananas!!! Potassium is supposed to help charlie horse cramps!
  7. Newly Diagnosed and scared

    Hello TheCount, Welcome! You've found the right place...a lot of knowledge and support on these forums. I am 48...was diagnosed 15 years ago at age 33. I have two young children also (12 and 9, maybe not so young!). I didn't have either of them when I was diagnosed, though. Take heart...young onset is generally a fairly slow progression. We all progress differently, but you have many, many good years ahead of you. There are many great medications and treatment options. This is a very manageable disease and there is significant research being done. Best advice...educate yourself, find good support (like this forum), exercise, get a good MDS, and relax. I still work full-time and am fully independent. There are frustrating days and times, for sure; however, there are many good days. Know that you are not alone...we are here...lean on us as you need! Peace and blessings, Mihai (Michael)
  8. A question to ponder...

    Thanks Dianne! That was excellent...a very good analogy/explanation for how many of us function day by day. Thanks for sharing that. Mihai
  9. Hello friends... Being a social worker by profession, I often enjoy picking people's brains... So, here is a question. Maybe it will spark some thoughts or ideas as to how we can better interact with and support each other. Here's the question: What is the thing that you most wish someone would say to you or ask you regarding your day to day struggle with PD? We all spend alot of time talking about doctor visits, symptoms, side effects, etc. and we all spend alot of time educating others about the disease process; but, what is that one thing that you want someone to say to you or ask you about PD? I look forward to your responses. Get thinking... Mihai
  10. Official

    Hey Sean, How's it going? Any updates? Just wondering... Mihai
  11. Parkinson's World Tour

    Hi Ben, Definitely let me know if you come to Cleveland. You should contact Jay Alberts and his research team, if you haven't already! Michael
  12. Official

    Hey Sean, I did start on medication immediately. I know there are various opinions about that nowadays. Some recommend starting immediately while others say to hold off due to the potential future side effects of the medications (such as dyskinesias, which I do have). Talk to your doctor about the pros and cons of each approach. My advice is if the symptoms are problematic enough, use the medications...they will improve quality of life. I don't remember ever discussing that issue when I was diagnosed. I just went ahead and began the meds. There are many meds available that support Sinemet (Carbidopa/Levodopa) in various ways, so the bigger issue beyond WHEN to begin meds is usually WHICH meds! Hope that helps! Keep in touch, Mihai
  13. Can you describe your pain?

    Hi all, Thanks so much for the information and suggestions! I appreciate your insight and willingness to share it. Blessings, Mihai
  14. Official

    Hi SeanK, What Gardener says is absolutely true...good days and bad days. I was diagnosed at 33 years of age (15 years ago). I am 48 now, am married, and have two active kids (12 and 9 years of age). While this is a progressive disease, don't lose heart or perspective. Everyone's journey with PD is different; however, the likelihood is that you will have many, many more years of good functioning. When I was diagnosed back in 2001, my symptoms were so minor, the whole diagnosis didn't really have a negative impact on me at that point or, honestly, for quite a few years into the diagnosis. Finding the "right" medication combination was key, as was educating myself on what to expect. It is amazing how much progress has been made with treatment options over the past 15 years. I was on 6 medications until 2015, when I switched to the Duopa infusion pump. It has been amazing. While it's no fun getting the PD diagnosis, at least now you have a name for your symptoms...there is no "unknown". Sometimes that is a relief in and of itself. Keep doing what you are doing and don't let it overwhelm you. I know...easier said than done! Know that we are all here for support and encouragement as you need it. Lean on us... Peace and blessings, Mihai (Michael)
  15. Hello PD friends, One of the symptoms that many of us deal with is pain. I'm just curious as to how each of you would describe the pain that you experience as part of your PD journey. I have had PD for 15 years now and am dealing with much more generalized pain. Some of it is due to rigidity (especially in the morning after I have been still most of the night). Some of it is due to dystonia. It seems to be mostly muscular pain, although it often feels like it is also in my joints. It's not easy pain to describe... Sometimes all I can say is that my whole body hurts...a mix of sharp pain and dull aches. I was just wondering if others here dealing with pain as a symptom could give me some insight into how you experience (and how you would describe) that pain. Thanks for any thoughts or help! It's always good to know others understand! Blessings, Mihai (Michael)