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Mihai last won the day on November 16 2017

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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1,236 profile views
  1. Doctor says symptoms 'consistent with' PD

    Hi Paul, Glad to see another Ohioan here! I am near Cleveland. I was diagnosed 16 years ago at the age of 33. I have never had a problem with tremors, but I do have issues with the other hallmarks of PD...bradykinesia (poverty of movement) and rigidity. Slowness on the left side and lack of arm swing were my initial symptoms. Currently, in addition to a host of "normal" PD symptoms, I am also dealing with alot of dyskinesia from being on PD meds for so long. PD is experienced very differently from person to person, but thankfully, it is a manageable disease overall. Sorry you have had to join the group, but you've found a very supportive and knowledgeable resource in these forums. Hang in there and feel free to ask as many questions as you need. Chances are, someone here will have an answer, a thought, or (at a minimum) will know someone else who does! Peace and blessings, Mihai (Michael)
  2. Duopa Pump Users-

    Sorry to hear about the roadblocks! I am still on the pump and doing well overall. It's not perfect, but much better than oral meds! Get ahold of the inhaler if you can when it comes to the market. I think you'll find great benefit in it! I am glad to hear that they are looking at making changes to the pump. The original one is heavy and somewhat cumbersome. I hear they are working on an alternative that eliminates the peg-J tube. That would be a blessing. Hang in there...good things are happening! Mihai
  3. Duopa Pump...

    Hi Dianne, Please send me the information. I would love to hear more about that! Mihai
  4. Duopa Pump...

    Hi all, Anyone else get (or considering) the Duopa pump? I've had mine for about 4 years now. Am interested in hearing from others who have it. Mihai
  5. Duopa Pump Users-

    Hey Drummergirl, Did you get the pump? How's it going? I hope it's working well for you. Mihai
  6. inhaled levadopa

    Hi all, I was in the clinical trial for this medication. It is very effective. It did take effect after about 10 minutes and lasted for about 45-50 minutes. It's not meant to replace other PD medications, but simply as a "pot-hole filler." That's how they described it to me. It's a good option when a quick "on" episode is needed. I'm glad to hear it is making its way to the market! It was a few years ago that I was in the trial. It feels good to see a positive outcome from clinical trial involvement! Peace, Mihai
  7. 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)
  8. 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
  9. 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
  10. 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
  11. 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)
  12. Newly Diagnosed and scared

    Eat more bananas!!! Potassium is supposed to help charlie horse cramps!
  13. 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)
  14. 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
  15. 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