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First of all THANK YOU to all for the warm welcome. I'm sitting here with tears of appreciation streaming down my face, then as I read other posts and reread your responses I crack into a smile because of all the new acronyms and terms we will be learning. I am a high school math teacher but that's only been for the last 14 years, before that I was in high tech telecommunications and before that commercial real estate in Washington DC; we lived in Silver Spring. Rob (my DH - God I love that acronym and that man) was a cameraman for CNN. Acronyms and terminology are something we are both very used to, and we always laugh at how they can come to mean so many different things depending on context. PD means "professional development" in the Education world, now it will NEVER mean "only" that to me again; but I will use the play on words to keep me smiling. I don't mean to share too much about us but I feel so grateful to anyone who's willing to share and to anyone we might be able to "help" that I want to provide some context. Thanks so very much NN for giving me some "forum posting tips" AND for explaining the acronyms so I can communicate more effectively. I'm now starting to wonder if I should have used a pseudonym instead of my (rather unique) first name as my login, oh well the "cat's out of the bag" now, so onward we go! BTW, I usually "sign" my familiar electronic correspondence with "L" or "LHG" so that will probably be "my" acronym. I notice that most who post have a summary of their symptoms/status and medications below their "signature". Where is this maintained/generated? I'm happy to share our details in a similar fashion. Also, I love so many of the names and quotes you share, I find them most encouraging AND they resonate with my beliefs and with my (sometimes irreverent) sense of humor! I had cervical vertebrae #4, 5, & 6 fused at the end of February this year, so I can honestly say my head is screwed on straight and permanently attached, but I'm not always sure it's working right. (My surgery involved replacing degenerated discs with plastic spacers and screwing a titanium plate into my vertebrae). I've been playing with "Shake, Rattle and Roll" as a new "name" for us. DH can be the "Shake", I'm the "Rattle", and we will continue to just "Roll" with it! What do you think? Okay, on the "serious side" - the Neurologist who provided the dx suggested Azilect as the first medication treatment. He's not part of the Movement Disorders Center at JHU (Johns Hopkins University) but he is associated with JHU. It appears that an appointment with an MDS (Movement Disorders Specialist - right?) isn't possible until November of 2016, or worse July of 2017 depending on where we want to be seen, but we're still pursuing options to "speed this up". Our first choice is to work with an MDS at JHU because that's where our trusted specialist for DH's autoimmune disease is (for those unfamiliar with my original post - DH has lived with birdshot chorioretinis for the last 10 years, it's a rare autoimmune disease that attacks the retina and can ultimately cause blindness). Although JHU is a 2 hour car ride from where we live, we're already in the habit of going there 3-4 times a year for DH's eye appointments so we thought maybe we can ultimately parlay our f/u (follow-up) trips into "two-fers" - an ophthalmology and a neurology appointment in the same day. Anyone care to share an opinion on the following options: 1.) Start with Dash (the diagnosing neuro. who is not specifically a sub-specialist but says he's very familiar with PD and the Drs at JHU who are sub-specialists) and the Azilect treatment he recommends. 2.) Wait to be seen (and ultimately start a life-long relationship with) an MDS before starting medication? 3.) Have the DaTscan Dash provided an order for or again wait until we're with an MDS and see if s/he suggests this also? (This may be a moot point since it looks like it might take as long for the DaTscan as it will for an appt. with an MDS.) Again, thank you to all who read this and to everyone who offers thoughts. I truly hope my posts might provide comic relief to others for now while we begin our journey and then maybe I will have more meaningful thoughts to contribute. Appreciation is something I have been specifically taught and it's one of the pillars in my personal mission statement for living. I have a new-found appreciation for the journeys of those with PD. While I may never walk in your shoes, I am committed and honored to walk beside you and, when asked and able, to carry you. LHG Partner and Caregiver for Newly diagnosed DH (dear husband!) DH symptoms: Left hand tremor, facial masking, left heel dragging, left hip pain, anxiety/depression, less than catlike balance (which was something he was used to having before - catlike balance that is) and possible swallowing challenges. Meds: Sertraline 50MG 1X daily by mouth (Considering Azilect
Registration is now open for two Parkinson’s wellness retreats at the Kripalu Center for Yoga and Health in the beautiful Berkshire Mountains, near Stockbridge, Massachusetts! Spring Program: June 15-19, 2014 “Navigating a New World: Wellness Retreat for People Living with Parkinson’s and Their Care Partners” This program (PD-201) is designed for patients who have been diagnosed for more than 3 years. Fall Program: October 19 – 23, 2014 “Navigating a New World: Wellness Retreat for Recently Diagnosed Parkinson’s Patients and Their Family and Friends” The autumn program is designed for patients who have been diagnosed within the last three years. For more information, please visit www.parkinson.org/retreat or please contact our helpline at 1-800-4PD-INFO (800-473-4636) or by email at email@example.com
My mom lives with me, my husband and son who is on the autism spectrum. For the past year and a half she has been exhibiting signs of parkinson's. She recently got health insurance (long story). Three neurologists have said she most likely has parkinson's but they have not formally diagnosed her. I am more inclined to believe she does because all the signs are there. She has an appointment at a movement disorder clinic next month. In the mean time, she was put on requip which is being used as a diagnositic tool. She was previously put on Sinemet but she had to discontinue it because she had an allergic reactions. I am scared about what the future holds for us and worried about being her primary caregiver. I have three siblings but they all live in other states. At least four hours away. I do not mind doing it but I know the toll it can take. I was one of the main caregivers for my grandma who had alzheimers. As much as I loved her it was tough. How do you all deal? Are any of you in a similar situation? Thanks for listening.