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Lonnise

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Lonnise last won the day on February 17

Lonnise had the most liked content!

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About Lonnise

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    Maryland
  • Interests
    Most of all - spending time with my husband, my rock, my life partner who now has PD as a companion too (besides me!)
    Gardening, birding and appreciating nature in all forms
    Reading - inspirational non-fiction, and most forms of fiction that "take me away"
    Yoga and other forms of exercising with others
    Watching Movies
    Traveling
    Wine tasting and making and eating all kinds of cuisine with friends
    Playing cards, pool, darts
    Water Skiing
    Listening to all kinds of music
    Dancing

Recent Profile Visitors

281 profile views
  1. My pleasure David, hope you find the book as worthwhile as I did. No worries about the MDS, we'll find "another" one, it just takes tenacity and time. All the best. Lonnise
  2. Fantastic Linda, thank you. I was hopping maybe there was another at JHU that would be taking over Dr. Mari's cases "quickly" but the practice has been very "unresponsive" and we're both getting frustrated with not having been able to even schedule a follow-up appointment since first seeing Dr. Mari at the beginning of February. I really appreciate your response and information (I wondered who you were seeing since you used to work at JHU and had such great things to say about Mari). Is a group still possibly gathering in September? The first "annual" meeting of the "Parkville Parkies" ? Hope you are doing well and enjoying summer. All the best. LHG
  3. Hello Forum Friends: As summer unfolds I find myself again logging in often and doing "research" about our unifying condition - the Parkinson's journey. Thank you all for your courage to continue your journeys and share your experiences. I wish you all the very best in pursuit of purposeful, worthwhile living! As you may have seen in other posts, the MDS my DH and I finally got in to see at Johns Hopkins has moved to Las Vegas, and while I'm not opposed to occasional recreational gambling, my health insurance doesn't reimburse for cross-country travel for doctor's appointments so I can't justify trying to combine trips . I am researching alternative advisors this month. The name of a respected and highly recommended MDS at MedStar Georgetown University Hosp. has been suggested and is on my list of potential "candidates" (thanks Daven) as is another friend-recommended MDS associated with Annapolis Neurologists. I am hoping to do some "background research" on at least 3 options for my DH and I to consider and then set up initial interview appointments. As you may have noticed, my approach to medicine in life is quiet analytical and practical. While I believe effective and ethical medical practitioners are deserving of great respect and consideration, I don't believe they are "anything more than" highly trained, intellectually intelligent advisors. I will not invest my time or money with a practitioner who approaches his or her profession in a "Father Knows Best" style, nor do I want one who is the "Information Guru" willing to share an abundance of information and then "leave it up to us to decide what to do". Both of these types of providers are worthy and available (in abundance), they're just not what fits for us. I recently finished reading "Being Mortal" by Atul Gawande (and I loved it so much I'm thinking of buying a copy to keep as reference). Below is a quote from this book that resonates soundly with me. # 1 & 4 are questions I am specifically wanting medical advice and guidance in answering. From Atul Gawande’s Being Mortal, Metropolitan Books, Henry Holt and Company, LLC 2014 Epilogue, pg 259 If any of you have an MDS you care to recommend in the vicinity of Maryland (yes Philly is an option but we don't have any friends or relatives living nearby with whom we could visit), and you think, based on the above, he or she might be a good "fit" for our needs, please message me. Baltimore is about 2 hrs. from our home and near my Mother's apartment; DC. is also about 2 hrs. away and near many dear friends as DH and I used to live in Silver Spring, MD & work in DC; Annapolis is an hour away. The JHU and GWU options appeal to us because they are NPF centers of excellence. The Annapolis group appeals because of its proximity. In the meantime, I hope something in this post provides value to any who read it and as always, thanks for being you and sharing part of your journey with us. Cheers LHG
  4. Benyamin, FANTASTIC. Thank you so very much for sharing. LHG
  5. DH has a card he can carry in his wallet that says "I'm not drunk, I have Parkinson's". Intended to be useful when driving in the event he does get pulled over which does indeed increase the tremors along with other activities. Probably wise to keep a copy of the medical diagnosis in the car too though since I don't know how convincing the card would be to an officer. When we are entertaining at home and the tremors, "slows" and/or clognition appear we like to joke that "he doesn't have PD he's drunk". We all laugh and then remember the great lyrics from Jimmy Buffett's song "Breathe In, Breathe Out, Move On" I bought a cheap watch from a crazy man Floating down canal It doesn't use numbers or moving hands It always just says now Now you may be thinking that I was had But this watch is never wrong And If I have trouble the warranty said Breathe In, Breathe Out, Move On Peace and smiles. LHG
  6. Oh how difficult it is to watch those we love suffer. I hope sharing the pain and knowing you're not alone helps provide relief, thank you for sharing. I'll admit that I'm a "thinker" in my approach to the continuum of life into death and I have experienced plenty of both during my journey so far. Two of the closely experienced deaths were eased by morphine and I am grateful for that. My father suffered a stroke, then c-diff, then a burst aortic aneurysm on his spleen, and had a feeding tube provided during the spleen surgery, all in the course of 3 months. I've never seen anyone fight as persistently and gracefully as he did, but after all the insults his body endured, he asked me to ask his doctor (Dad didn't speak much after the stroke, but we communicated just fine nonetheless, we were similarly "wired" that way) what quality of life he had to look forward to if he beat the latest insult. That answer was already known, what Dad was really asking was for us to let him go peacefully. My Mother-in-law's last four months were differently endured, but similarly ended. If you have a chance read "Being Mortal" by Atul Gawande. It's not depressing, quite the opposite, it's empowering and thoughtfully written. Use your experiences and the insight gained therefrom to help guide your own journey and just as importantly help your friends and family enjoy and respect this journey with you. One of the greatest gifts our loved ones can provide is sharing with us their hopes, fears, the compromises they're willing to make and their wishes; preferably before debility occurs to the point of not being able to think and communicate these thoughts. DH and I have begun these discussions in the effort to "put that planning in place" (long ago we prepared our wills and advanced directives etc. but with PD there is more to think about as you all know). Our goal is to focus our energy on the pursuit and enjoyment of worthwhile living while being realistic and practical about the fact that death is a natural end to that process. I also have a soon-to-be 93 year old Mother and my goal is to make sure she too pursues purpose and enjoys every one of her remaining days with the hope that there are thousands more of them to come. Be gentle with yourselves. Don't second guess your decisions and don't deny or fight your feelings. These are an important part of your reality and your journey. Try to find an uplifting thought/feeling/experience a few times each day, however fleeting. I send you peace and reflective joy throughout each day. Hugs. LHG
  7. Hi David, Thanks for the clarification. I'm NOT looking for answers to "why us", that seems like wasted energy. I am interested however in helping to customize a management plan and anticipate the expected and necessary revisions thereto as part of my supportive awareness and partnership in this journey. I just finished reading "Being Mortal" by Atul Gawande and the questions he identifies as critical throughout one's journey of worthwhile living resonate with me. Accordingly, I'm looking for an MDS that embraces this type of relationship with his or her patients and while we as a society may not yet have the kind of "sub-category" tailored treatments for PD, I believe it will happen and I'm hoping to help it happen during our lives. Best of luck with your continued journey and enjoyment in living and thank you again for your courage, participation and sharing. Peace. Lonnise
  8. Thanks so much for such great information. I have checked the PWR! Website and looked up "nearby" options. Two hours away isn't nearby enough for us. The MDS we finally got in to see and like (at Johns Hopkins) moved to Las Vegas, didn't mean to scare him off Ha !😝 ! We are now researching another MDS now, pain in the "arm", but we won't stop looking until we're satisfied Next up is to contact my PT I've talked a little to my Yoga Instructor I would LOVE to do dancing, but it's not a passion my husband shares. I keep trying though. Again thanks for all the great info and insight. Best wishes for continued worthwhile living, loving, and laughter. I'll you know how our progress goes when there's progress. LHG
  9. Thanks for the post. PWR4life looks very interesting and promising. Our challenge (my husband was 56 when diagnosed) is that we live in a small county on the eastern shore of Md. and are not near any center that offers this kind of program. We're a 2 hour car ride from Washington, DC, Philly, Baltimore, etc. My question for you LAD is how you started a PWR program in your area? We have a trusted physical therapist and yoga instructor nearby (two different women) that we maybe we could work with? Thanks in advance for any suggestions. LHG
  10. Awesome, thanks Ben. Just read the post linked above and clicked on "blog about the blog" and found you met this blogger in June and he is a great admirer of yours with good reason. I hope we can find an MDS and/or group that is interested in helping us "figure out" Rob's particular "strain" of PD in an effort to design and maintain the most effective management regime. All the best to you and thanks so much for sharing your discoveries and insights. Love your writing. Cheers. Lonnise
  11. David, Thanks so much. Very informative and hopefully resulting in bodily responses that are exactly what you want. Has your PD been "subcategorized"? I'm thinking maybe so, since you have family members dx'd w/ PD and other genetic markers (?) identified in your signature information. I'm reading a number of postings and articles that support that PD clearly has different "roots/origins" one-such being an autoimmune disease. I intend to do more "research" but I suspect my husband's "type" of PD is exactly that, autoimmune "mutiny" if you will. Not sure if immunotherapy works for autoimmune diseases, but I'll look into it. Again, best of luck with everything and thanks for sharing. LHG
  12. Benyamin, Loved reading your latest blog. What are your thoughts about PD being an autoimmune disease (for some people)? Seems to me that the 40 some genetic markers that have been linked to PD may also play a part, as they may make a person "susceptible" to a trigger that then sets off the autoimmune system's mutiny against dopamine. Have you found anyone throughout your travels and research that is studying this "form" of PD? I'm fascinated by this possibility and more importantly any insights it can provide my husband (Rob) and I in our quest for designing, implementing, revising, and re-implementing our plan for managing his PD for many more years as part of our journey through worthwhile living. Rob also has the rare autoimmune disease Birdshot Chorioretinitis - which we suspect was triggered by a tic-borne disease for which he was treated about 11 years ago. (We've been successfully abating the progression of this incurable retinal disease for over 10 years with the guidance and input of a renown specialist at Johns Hopkins). Rob was diagnosed a year ago with PD and while he is not part of the YOPD subset, he is "only" 57. We are very intrigued by this new development (when we're not being "ticked off" about having to navigate its complications) and it's hard not to suspect there's some connection between PD and autoimmune diseases that attack organs in the head! Currently I teach mathematics in a public high school in a small county in the state of Maryland so summertime is when I delve more deeply into learning about PD and trying to synthesize the information I find that seems relevant so that Rob and I can design a plan for worthwhile living that best meets our needs and desires. We want this to involve working with an MDS who "thinks" like we do. So far this person hasn't been "found" but we're sure he or she is out there, we just have to keep learning and looking. Thanks in advance for any info. you have or could point me toward. Best of everything as you continue your life's journey. I think you're amazing and I'm so grateful I "found" you in this forum. Cheers, LHG
  13. Dr. Okun and any other readers: Has anyone read Atul Gawande's Being Mortal? FANTASTIC book and one that every PWP and caregiver should read, in fact all adults and certainly any medical professional should read this non-fiction work analyzing the role of medicine and human-kind's quest for worthwhile living. Great, thought-provoking questions about life choices and the partnership between "patients" and their medical advisors!
  14. Thanks for the article otolorin. The concept makes logical sense to me but I'm not a trained scientist. Hopefully this helps lead to practical treatments that can slow progression if not stop it similar to the way we have other autoimmune attacks. DH has successfully postponed progression of his Chorioretinitis for over 10 years, to hope we could do the same for PD is uplifting. I realize this is "brand new" thinking and our medical system can't respond as quickly, but still...
  15. I think there are at least 5 or 6. Call the front desk and ask - hopefully they still exist. Good luck.