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Nailtatt

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Nailtatt last won the day on September 23 2016

Nailtatt had the most liked content!

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About Nailtatt

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    Advanced Member
  • Birthday 07/06/1970

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  • Gender
    Male
  • Location
    New Braunfels, Texas
  1. Newly diagnosed- any advice?

    Mark, I was diagnosed 2 years ago at the age of 44. I started right away on meds as my tremors were pretty bad and causing me issues at work etc. While I somewhat understand the "fear" of meds I also decided I wanted the best quality of life I can have immediately and will deal with whatever comes. I have had to increase meds somewhat over the last 2 years but not dramatically although I am finding a hard time getting a good routine down that will have the meds lasting all day. Anyway, do your research and learn all you can and then make the best decision you can make for yourself. Hope that was somewhat helpful!
  2. How do you tell people that you have PD?

    Once my DX was confirmed. I told family right away, then close friends and then I put it on Facebook. I didn't want anyone having to carry a secret for me. I then told my employer. I work for a "smaller" company that is VERY family oriented and they have been great. Even helped me and my boss put together a car show this past year to raise money for the local PD Support group I am a part of. Anyway, each of us and our situation is different. You just have to measure where the people are at in your life on if they can handle this news and if it will cause problems with your employer or not. As for self pity or whatever, I shared my story to help raise awareness and it has helped and I will continue to do so, NOT for self pity however.
  3. Medical Marijuana

    Good to know. I wasn't sure. I will ask those questions when I do try the ones I have access to. Not quite ready to do that but will do my research.
  4. Medical Marijuana

    I have access to some edibles and am considering trying them when my meds aren't working very well. Going to have to experiment with them to see the right amount etc. Should be interesting.
  5. MDS vs a regular neurologist

    I am going to see an MDS for the first time since my diagnosis by a Neurologist. I went to a second Neurologist that came highly recommended and he was a complete asshole. The only good that came of it is that he referred me to the MDS. The MDS is in Houston, about 3 hours from me, but will be worth it.
  6. What's The Forecast For A Cure?

    Just to jump in on the telling your employer part, I told mine fairly quickly after diagnosis. I am fortunate in that I work for a family owned business with a total of about 150 employees with 4 branches, on in Arizona and 3 here in Texas. My symptoms were VERY obvious and I couldn't hide them and some days still can't when the medication is not working completely. The company I work for has gotten behind me 100% and we even recently held a car show at our branch on October 15 to raise money for the local Parkinson's support group. It raised a significant amount of money. I am proud to work for people like this. With that said, everyone's situation is different and you really have to assess it all. As for a cure, I don't even focus on that anymore, it seems like everyday there is news of some new Parkinson's wonder drug and then it mysteriously disappears from any news feed or whatever. I am living one day at a time and trying to make the most of all that I have and help as much as I can on a local level etc.
  7. Typical Tremor??

    All such great information from everyone! Thank you for only backing what I already knew. This particular Neuro that I went and saw does not typically deal with YOPD from what I can see. I really think he just wants to fit PD into a box and call it a day and not deal with anything that he may or may not have seen. That is fine but he didn't have to be a complete dick to me at my appointment and make me feel like shit. At least I get to go see a fairly well known MDS in Houston and am looking forward to that. I am just hopeful this MDS can get my meds straightened out so I am not so on and off etc. through the day. As for DBS, I am all for it when the day comes. I will do whatever I can to prolong the quality of my life and hopefully keep me working longer. A guy in my support group put DBS to me this way (and he has had it done) is that DBS basically will help with most symptoms that Carbidopa/Levadopa controls and you should typically be able to take less. He did reiterate that he is not a doctor but that is how it was described to him and has been his experience.
  8. Any experience with Cannabis & PD

    I know very little about this topic but am trying to learn. I live in Texas as well and this lame ass conservative state will probably never legalize it sadly. Anyway, I have access to MJ and need to learn more about the kind I have access too. I have never done it in my life but now with PD in my life I am VERY curious. I have a good job and they don't drug test in my position so that is not an issue. I would mainly want to use it in the evenings when my meds wear off or just aren't working. This is all great info and I am enjoying reading about it! I hope the info keeps coming and I really hope more testing is done. I do know what THC is but have no idea what y'all are referring to when using the term "CBD". I will look that up. GREAT DISCUSSION!
  9. I was diagnosed a year and a half ago at age 44. I started C/L right away as I didn't want my symptoms causing issues with my job. (Which they were at the time) I am glad I did. I felt so much better after starting Sinemet! I decided to live for today and not worry about what may or may NOT be down the road. Just my thoughts and opinion. Like others have said, it's up to you!
  10. Typical Tremor??

    Yes, it does it worse as the meds are wearing off for sure. It gets to the point of painful. I can still open my hand and move my wrist but when I stop moving it closes right back up and so on.
  11. Typical Tremor??

    He mentioned dystonia but It doesn't lock up that way. I can move it and un curl it. Maybe it's just not severe dystonia?
  12. Typical Tremor??

    Agreed. This second Neuro was very flippant about the whole thing as if he was diagnosing me with just a cold. It was unreal. My wife was with me and she was so pissed it was unreal. I am looking forward to going to see the MDS in December. Like the leader of my Parkinson's support group says, "We know more about this damn disease than our own doctors do!" So True!
  13. Progression

    I try not to think about it either. I try to go back to a Michael J Fox quote: "Don't spend a lot of time imagining the worst case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice." - Michael J Fox
  14. Typical Tremor??

    I went to a new Neurologist about 4 weeks ago and he was a dick. Long story short, he wouldn't listen to me or do a full evaluation etc or anything. All he kept telling me was my tremor was not typical of a Parkinson's tremor and then blew me off. The good part is, he referred me to an MDS in Houston (3 hours away from me) and I am thrilled about that. I was diagnosed with Parkinson's back in April 2015. Meds have worked great for me for the most part but I was having issues so I decided to see a different Neurologist. I firmly believe I was taking to much Stalevo and since reducing my dose, things have been better. My main question is, what the hell is a "typical" tremor? My right hand tremors and closes up into a fist (not a tight fist, my fingers just curl). I get a tremor in my leg and foot sometimes when sitting. My leg bounces when I have my foot on the floor and when my feet are up my foot goes side to side. I would upload a video of my hand but have no idea how to do that! It has always been my understanding that nothing is "typical" with this damn disease. I am interested to hear your thoughts and experiences etc. Thank you!
  15. philosophical acceptance of PD

    I like what Michael J. Fox said. “Don’t imagine the worst… If you imagine the worst and it happens, you’ve lived it twice”
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