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Melissab

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About Melissab

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  1. I live in a pretty large city just a few hours south of Chicago. We have several large hospitals and a neurological institute. From the very beginning of this journey I have found that young onset PD is just not the same in terms of access to services. First, I had to go to Chicago to actually get a MDS to diagnose me correctly. I want to do all I can to slow this process down and would love to do Rock Steady Boxing, but it’s only offered during the days and I work. I need to do LSVT Loud, but again...no way with a working schedule. As if this disease isn’t isolating enough, I feel like because I’m not in the older group of people there is not any support for treatments I need. I really am just venting. Anyone else finding this to be the case?
  2. Photography and Parkinsons

    I am! It started as a hobby and has sort of become more (weddings, newborns, seniors, families). I am a little self conscious about the tremor but I doubt people notice too much. You can see my latest work on Facebook @bloomphotosforstjude
  3. Similarities between Essential Tremor and PD

    I think switching to a MDS is the best plan! Good luck to you; it can certainly be a frustrating road!
  4. Similarities between Essential Tremor and PD

    I’ve read some articles about the possibility of a connection,but at this point they are different diseases and require different criteria for diagnosis. To make things even more complicated, they can occur together. I have a resting tremor, but I also have a postural tremor, for example. This is a really good article explaining those overlaps and differences: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475963/
  5. Official diagnosis today

    Just a quick update...I did end up doing genetic testing and discovered my early onset is due to a Parkin mutation (PRKN gene). It doesn’t really change anything though I did inform my siblings so they are aware and it does give me some info to pass along to my own kids when they are older. Did anyone else have this done?
  6. Rick, best of luck with DBS this week!!!
  7. Stump, you are right; sorry for the mix up but thanks for the correction! Yes, I am right handed but tremors are on left. My concern was the shaking foot on right side!
  8. I was diagnosed with early onset PD a few months ago. Always, my tremor has been left side only and that's also where the MDS notes rigidity and bradykenisia. I am only on amantadine. I've noted my right foot tremoring a few time but usually it was after exercise so haven't thought much of it. Today on my way to work,while driving, my right foot was quaking on the gas pedal and I couldn't get it to stop without moving my whole leg away. I really hope this is coincidence and not progression. In my left side, my hand is most affected, so is it even normal to "skip" to another limb when it does start to progress?
  9. I am newly diagnosed with early onset PD (38 years old). For some time before my diagnosis I had vivid dreams of trying to run but being unable to move my legs quickly enough. Since diagnosis I have had several dreams of similar nature and even some of falling and being unable to right myself. I'm not concerned about these dreams, as my dreams are almost always vivid and somewhat scary, but I find them interesting, both in that they preceded a diagnosis and that they continue. Anyone else?
  10. How did you talk to others?

    Thanks to all for your comments. Even a week later, I feel better overall. A therapist is a good suggestion that I should probably look into more. I appreciate all the suggestions and support!
  11. Official diagnosis today

    I'm an avid runner, have been for years. It's actually one way I realized something was going on...I was so tired and just felt stiff and like my legs wouldn't "go". I plan to keep this up especially now! I do a low impact weight class a few times a week as well.
  12. How did you talk to others?

    I was just diagnosed less than a week ago at age 38. After a year of every test under the sun I was just relieved to have a name to call what was going on and "proof" that I wasn't crazy. My husband was with me at my appointment and I told my three closest friends (also coworkers) who knew of everything I'd had going on. I did not tell my mother as she is dealing with terminal brain cancer and struggling with guilt over leaving her family, but I did tell my sister. I presented to all of these people my immediate reaction, which as I said was relief. But now, a few days later, reality is setting in. The what ifs, the life I'd had planned both professionally and personally, worries that I have no way of knowing if they'll come true. And I feel like I can't say how scared I am because everyone thinks it's no big deal-I made it all seem ok. My husband tells me not to worry because things could be fine for a very long time, and no one else has mentioned it at all. On top of that, I don't want to be the needy friend-the one whose mom is dying and who now has this disease. I guess I am wondering how you talked to people early on about what you were afraid of and how you let them know how to support you. I fear this will be a lonely road. While my symptoms are mild now, it doesn't releive the worries.
  13. Official diagnosis today

    Thanks everyone for the welcome! I'm still trying to wrap my head around this and what it could mean. It's good to know there is someplace to go that people get it!
  14. Official diagnosis today

    One month exactly into my 38th year, I got "the" diagnosis and to be honest, I feel so relieved. I started this journey a year ago (officially) thinking I had MS and after all the tests, scans, pokes and prods, a handful of neuros and other specialists, and after finally seeing a wonderful MDS at Northwestern Medical Center, this is the card dealt to me. I told her I would hug her if she could just give these things a name. She said my stage is mild but I do have tremor, bradykinesia, and rigidity. I was truly beginning to think I was going crazy. For now, we will stay away from any meds other than Amantadine to help me fight sleepiness in the daytime. It will be nice to have somewhere to "go" and I look forward to getting to know all of you better.
  15. Diagnosed today

    Today I finally got confirmation from a movement disorder doctor at Northwestern Medical (clinic that Dr. Razak heads) and I loved her. She spent nearly 90 minutes with me and after she easily diagnosed me with bradykinesia, rigidity, and tremor she said I fell in the "minor" category for now. She did offer Datscan and genetic testing but for now I'm holding off and she was fine with that. I'll start amantadine tomorrow but for now I'll stay off all other synthetic dopamine meds. Thank you Dr. Okun for encouraging me not to give up. I was so sure I'd be told I was crazy. It is so worth it to see specialists in the area; the neuro I've seen is so well respected in the field of MS but this just wasn't his area and I am thankful he also referred me on! I feel like I know what I'm fighting now and that actually feels great!
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