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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

371 profile views
  1. Parkinson and treatment drugs

    Hi Rainbow, My DH (dear husband) was diagnosed in July 2016 (on the 8th to be exact- I'll never forget that date - ha!). Specifically for PD, he currently takes Pramipexol (1.5 mg) and Rasagiline. He had been taking Sertraline (5 mg) for a number of years before the PD diagnosis and still does. He also takes a number of other OTC supplements and Rx 's for non-PD-related conditions we've been managing, some for over 10 years. We try to look at PD as just another part of life and we'll manage that too in ways that keep us enjoying and appreciating life. You're doing a GREAT job asking questions and continuing to evaluate the information you receive to help your Mom design and implement the best plan for her. If you can, find an MDS to add to your management team and ask them lots of questions too. The other responses from the excellent folks in this forum are spot on. Exercise is the key to a healthy and happy life for anyone - PD dx aside. Incorporating exercise into daily routines and staying moving throughout the day is perfect along with specific activities designed for (safe) cardio exercise along with balance and flexibility improvement. Your Mom will have to find what works for her that she will commit to and persist doing even when "she doesn't feel like it". Lack of motivation can be exacerbated by PD so helping her design something she will stick with is key and again, if you can, add some social interaction (do it with her, have her join a group, etc.) Social interaction is good for mental stimulation and improved brain plasticity. But as everyone here has said - your Mom's experience and her management plan will be unique to her. Keep up all the good work and remember to take care of yourself too. All the best. LHG
  2. A little something to think about

    LAD, This is so useful and true, it's worth posting more than once. I know I've seen it before, but I was surprised to see "skin cancer" as a PD-related condition. I don't remember that one (there others I knew). Does anyone reading this post know of a skin cancer connection? I like the idea of adding positives, so here's a start (?): An immediate motivation to "stop and smell the roses" and (as you said in another post) seize the day! A reason to take up dancing Reaching out and connecting with many other fabulous people (as on this forum) Feeling better after exercising - more than you did before the dx Maybe we should think of PD as representing "Powerful Determination" - what do you think? Best, LHG
  3. How did you talk to others?

    Welcome Melissab You have every right and reason to be "scared" as being diagnosed with an incurable condition that can cause debility especially after many many years is just plain scary. Having said that, don't dwell too much on "what will happen" as no one truly has the power to predict the future, with or without PD. You are young and there are many non-medical, and medical therapies that you can use to manage your "new companion". As you will hear from many others on this forum, remember you have PD it doesn't have you! Three things I recommend right away: 1.) Get into an exercise routine that you will "like" then do it with commitment and persistence. 2.) Find a licensed therapist to converse with about your "deepest fears" and your thoughts overall. 3.) Look for an MDS (movement disorders specialist) for your care team and be persistent and patient in searching for and selecting one. (You'll probably have to wait a while, but it will be worth it). When my husband and I shared our "news" with those we chose to tell we too tried to sound reassuring and positive about it and now it's "no big deal" which for the most part is good. Nonetheless, as the primary care giver, I worry that I'm doing all I can, and I'm worried that my DH is dealing with his feelings and thoughts too - he's not a "talker". Like you, I'm very concerned about being an emotional or psychological burden on my friends (my family consists of my husband, my 93-year-old mother, and my brother-in-law). Moreover, sometimes I can be very analytical in my thinking, which doesn't always resonate with my friends, so I like the ability to have candid and sometimes "debbie downer" conversations with a trusted, professionally trained peer - this is how I view my therapist. So the monthly visits are definitely worthwhile and help me not "stay in my head" too much. One of the first things to ask a therapist is to help you craft what you say and how you ask your support team for the kind of support you need which will obviously change depending on the other things in life, not just PD. That's something we caregivers really, really want to know how to do, but we're not mind-readers and we don't ever want to make our "partners with PD" feel helpless or burdensome so without meaningful conversations - that are sometimes more emotionally charged than we want - it's a balance-beam-walking act. Best of luck with your journey and with your Mom. Make sure you let your sister and husband, and any other close friends help you right now especially with your feelings about your Mom - that is a tough experience to live through and you mustn't let it be a silent and solo part of your journey. Peace and blessings, LHG
  4. newly diagnosed outdoor active female

    Welcome Hiker to the club no one "wanted" to join; but now that we've been involuntarily inducted we're glad it exists. Since exercise is the only "treatment" proven to slow the progression of PD, you are clearly on the right path to keeping it in "slow motion" (no pun intended). Keep up all the activities you currently enjoy and as LAD wisely points out add in neuroplasticity activities and maybe even some speech strengthening work - I've read that singing is excellent, however I clearly could only do this in the shower when no one else was home - I cannot generate music as much as I appreciate it . As you will find from the wonderful contributors on this forum, oxymoronically, we are all the same in that our journeys are all unique. The progression of your PD may indeed follow parts of "common paths" as listed in all the literature you can find (I think the pamphlets that NPF will be happy to mail you are a good start if you haven't already read them), but no one will be able to tell you on exactly what course your PD will progress. As far as starting medications, these only treat symptoms. There are some Neurologists that still feel Rasagiline (brand name - Azliect) may have some neuroprotection qualities - but that's not been scientifically proven and starting it is a personal decision only you can make. There are as many folks that are "for" it as "against" it - which is true with most approved medications. "One size fits one" is how I look at it. Moreover, with any plan of action (including inaction) you will best know what works for you by how your symptoms respond, pay attention to the non-motor symptoms as well; however you may not have realized these were PD related (if they in fact are) - that's what DH (my dear husband) and I found. Try to find an MDS that will help you craft a path of action that serves your purpose. Beware, finding and getting in to see an MDS will probably take months (took us 7 months and now we're having to find another which is also taking months, but we try to remind ourselves of the adage - patience [and persistence] is a virtue. Mind you, I always said "if I wanted to have [patients], I would have been a doctor" - works better orally than in writing - ). There is a serious scarcity of MDS specialists compared to the increasing number of humans diagnosed with movement disorders, nonetheless having this specialist as one of your trusted advisors is worth the work & wait. As I have quoted in other posts, I am a huge fan of Atul Gawande's book Being Mortal. I encourage you to ask and answer the following questions in your ever-evolving journey with how you manage PD as part of your new reality. Lastly, as far as when to go hiking in Spain, my "advice" is do it as soon AND as often as you want to and can. Why not go now AND in 5 years? I assure you the hike will be different each time but not because of PD, because it's something you want to do and will appreciate forever. Doing the things that fill our lives with joyful purpose and appreciating all the things in life we can seems to me to be a wise philosophy by which to live. Again, as LAD wisely stated, you have PD it doesn't have you. Best of luck with your continued journey, I look forward to sharing with you. LHG
  5. 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
  6. 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
  7. 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
  8. A Journey Round My Brain

    Benyamin, FANTASTIC. Thank you so very much for sharing. LHG
  9. Hand tremor when nervous, anyone else?

    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
  10. Morphine in hospice care

    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
  11. Phase 1 Trial of New PD Treatment: My Experience

    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
  12. 30 yo Husband diagnosed with YOPD

    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
  13. 30 yo Husband diagnosed with YOPD

    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
  14. A Journey Round My Brain

    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
  15. Phase 1 Trial of New PD Treatment: My Experience

    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
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