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Mihai

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Mihai last won the day on October 14 2016

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About Mihai

  • Rank
    Advanced Member
  • Birthday 08/28/1968

Profile Information

  • Gender
    Male
  • Location
    Cleveland, Ohio
  • Interests
    Reading

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  1. Thanks Dianne! That was excellent...a very good analogy/explanation for how many of us function day by day. Thanks for sharing that. Mihai
  2. 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
  3. Hey Sean, How's it going? Any updates? Just wondering... Mihai
  4. 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
  5. 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
  6. Hi all, Thanks so much for the information and suggestions! I appreciate your insight and willingness to share it. Blessings, Mihai
  7. 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)
  8. 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)
  9. Hi Ben, I admire your efforts... I have had PD for 15 years (was diagnosed at 33). I am currently using the Duopa infusion pump as my only treatment intervention. It is amazing! I have been in about 6 clinical trials at the Cleveland Clinic. If you ever visit Cleveland, let me know... There is a ton of research going on here. Keep up the good work! Mihai (Michael)
  10. Hi CynthiaM, I took Stalevo for years...it worked really well for me. I was taking it 6 times a day. I no longer take it since I am now on the Duopa pump, which blows Stalevo out of the water! Blessings, Mihai (Michael)
  11. Hey Abbie... Thanks for sharing...glad it has been a great option for your husband. Everything you shared is "right on" as compared to my personal experience! Blessings, Mihai
  12. Hi Dianne, Glad to hear it is working well for you...I am having the same experience! I'm not sure why more people are not looking into it. I know that having a peg-j tube can be a bit intimidating, but it's really not that bad, especially given the benefits! Blessings, Mihai
  13. It's a method of delivering C/L directly to the intestine through a peg-j tube inserted into the stomach. The pump facilitates a consistent flow of medication throughout the day, so the "peaks and valleys" with regular PD meds are essentially minimized (or eliminated). It was approved as a treatment option by the FDA in February of this year and is available on the market in the US. Mihai
  14. Hello friends, Just wondering if anyone has or is exploring the Duopa pump. I went through the clinical trial with it (in 2014-2015) and have had it now for over 2 years. It is amazing. I would strongly encourage those who are on multiple medications and struggling with a high incidence of off times to consider it. I was on 6 oral meds prior to the pump, but am now only on Duopa. It takes a little bit of adjustment, but in my opinion is well worth the adjustment phase. I'd be interested in hearing from others regarding their experience. Peace and blessings on your PD journey, Mihai (Michael)
  15. Hi kronron, Dyskinesias result from long-term use of C/L. They are "bad movements" and occur when there is too much medication in the system (and they get worse over time). I was prescribed Amantadine on a couple different occasions in the past to help with the dyskinesias (I have had PD for 15 years); however, I never noticed any real benefit from that drug. I have found that eating some protein will tend to calm my dyskinesias; however, the protein will also impact the effectiveness of the C/L, so I have had to figure out how much to consume (which is a fine balance). I have also found that caffeine and stress will exacerbate my dyskinesias, so I try to minimize those when I really don't want to be bothered with dyskinesias. The good news is that I am now on the Duopa pump, which has really helped with both PD symptoms and medication side effects. My oral meds are gone and I am only on the gel. It's been a huge help. I highly recommend that others consider the pump...it's a very effective treatment! Blessings, Mihai