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Lonnise

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Lonnise last won the day on February 17

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About Lonnise

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    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
  1. I think there are at least 5 or 6. Call the front desk and ask - hopefully they still exist. Good luck.
  2. Interesting thought - PD being an autoimmune response. My DH has managed Birdshot Chorioretinitis (birdshot inflammation of the retina) for the last 10 years and this is a known autoimmune disease that happens to attack the retina. Our eye specialist is renown for her work with this disease and practices at Johns Hopkins where we are now also now "members" of the movement disorders specialty group. (we should qualify for "group discounts" - ha!). Neither specialist (Thorne the ophthalmologist, nor Mari, the MDS) suggested that either disease was related to the other, but it still makes us curious. Luckily the meds for each condition (so far) don't conflict with one another. Good luck with your journey. LHG
  3. Hi Linda: Beginning of September I'll be back in school and Rob at work, but we'll be with you in spirit. I think gathering at Oak Crest would be terrific. All the amenities you have - including pools, puzzle tables, libraries, and all those you mentioned. Also, the center has "one-room" rentals you could book if you know the date and need in advance. I've done that when we've gathered at Mom's but overflowed her apartment's accommodations. Have a great gathering and maybe next year Rob and I can join you. Best. Lonnise
  4. Best of luck David and thanks for having the courage and curiosity to do this. Spinal taps aren't "fun" but I'm sure they've progress in the last 35 years (that's the last time I had one). All the best. Lonnise
  5. Linda: Rob, Mom and I just had lunch at Papas restaurant not far from you at all. This isn't a resort, just a restaurant, but it has great food and a fireplace (but I'm sure the fireplace isn't running during summer). Don't know if that helps or not. Hope you are well. Best, Lonnise
  6. Hey there, Just breathe, lean into the "discomfort" and you'll realize it won't absorb you. I promise it won't. You'll be surprised at what triggers your different awareness that you never thought of before. It's fine to cry, that's one of Nature's ways of helping us clear toxins from our bodies. You'll learn to "make peace" (in part) with not being able to plan out as much as you thought you could. Reminds all of us to enjoy each day for the things in it that we don't control. Take care and keep moving forward. Understanding "why" you feel a certain way isn't as important as maybe you thought it was. Just feel it and then decide (if that makes any sense at all). You're doing great. Keep it up. LHG
  7. Hi Wearwear: I'm a little late to the game here so I'm not even sure my response will be read or helpful, but here it is just in case. Whenever I think about sharing "weighty" information with others I first ask myself what I want them to do with the information. Next I ask how I expect those I choose to share it with will react. That usually helps me sort through with whom, when and how I will share the information. I think trusting your gut is excellent advice and I also hope you can accept and truly believe that openly asking for help and support is NOT self-pity. In fact, it's one of the most confident, self-advocating things you can do. When newly diagnosed with a life-long and/or life-altering condition that may be unknown and a little scary, it's FINE to need and want emotional support as you sort through and choose how you want move forward. Moreover, asking for "emotional support and a non-judgmental ear" let's those you choose to tell know that you trust them and aren't afraid of being vulnerable around them which strengthens any interdependent connection you already have. It shows you trust them to respond in kind; and that them saying "no, I can't help you right now" but thanks for sharing is a sign of a very healthy relationship. You can and obviously do what you need to to take care of yourself and you are confident enough to ask others for help when it really would be helpful. In turn, they should feel confident to do the same. Remember the great song by Bill Withers - Lean On Me? Makes sense doesn't it? Best of luck. LHG
  8. Does the forum Pharmacist have any suggestions? I'd also contact the manufacturer to see what they can do. This is something that concerns all of us (managing the costs associated with managing this condition). Best of luck. Let us know how you make out. LHG
  9. Meeshelly - Anyplace you find help and/or comfort is the right place in this forum. The first thing I railed against about my DH's PD is the fact that it "stole his smile" - damn PD! I knew it (the smile that I so loved to see) was still there when I stared deeply into his bottomless blue eyes, but even he said he hated pictures of himself because that wasn't him looking back. While I'm sure we're both adjusting to the "new expressions" I do think the Azilect has helped some and I know physical exercise is critical. We are all caregivers in relationships so don't spend any more time on that detail, and don't underestimate your DH"s interest and ability to take care of you too. You might just be pleasantly surprised at what he can and wants to do. Marriage isn't easy but it IS worthwhile if you like AND love your spouse and I sense you do, just like me. (BTW - I also empathize with not having "lots" of support - DH and I were never blessed with children, I am an only child, my Mom is 92 and all other parents are dead, DH has a twin brother who lives 4+ hours away, no spouse or children. Doesn't ultimately matter, we just have to reach out to others and while that's not easy for either of us, we're learning to do it.) Hang in there, get some MDS help if you can and keep reading and posting. Best, LHG
  10. LOVE this thread! How do you get a tissue to dance? Blow a little boogie into it. Also, along the more birthdays = living longer and mother in hospital when born at a very young age - I love to share with my students (when they are trying to pull the wool over my eyes) the phrase "I may have been born at night, but it wasn't last night". Keep them coming - LOVE TO LAUGH (watch that clip from Sound of Music!).
  11. Blunt realism does not have to be antonymous to positive attitude does it? Living well, regardless of one's circumstances - physical, financial, social, or otherwise - is indeed a choice of attitude. While I do not espouse Polly Anna platitudes or fantasies, I also do not think Chicken Little had a healthy perspective either. Life has never been about "fairness" - but nature will ultimately create balance - even if she has to get there through unrest and destruction. I say we choose to do what makes us the most productive, supportive leading men and women in our own lives. PD "sucks" but it is what it is and we either let it define us or we manage it and move on. Sounds to me that's exactly what you've done - congratulations. Keep doing it. LHG
  12. Daisygirl: I hear you. My DH and I have also been planning for and looking forward to retirement and travel etc. and we hadn't expected to have to plan for managing PD as part of it, but also as you say, everything happens "for a reason" (or at least it's easier for us to accept if we can link "reasons" to it) so I am trying to accept that this is nature's way of telling us to SLOW DOWN and enjoy the little miracles of each day including the many days we plan to spend enjoying retirement. Good fortune throughout your journey. LHG
  13. Welcome Irish620 Although no one "wants" to join the club, we're all glad it's here. My DH (dear husband) was diagnosed (at age 56) in July and it threw us for a loop, but as all the great members here reinforce, PD is just another part off our lives, it doesn't define us; nor does it have to be the dominant or driving force once we get more educated and settled about it. As far as "worrying" about your Husband and Mother trust me that's very normal and then hear this loud and clear - "stop it". All of us worrying about each other does nothing but feed the anxiety and depression wolves that exist in all of us and as the wise American Indian folklore advises - the "wolf that wins" is the one we feed. As the spouse my "anxiety" is not knowing what to do to truly be helpful and feeling that "just being supportive" isn't enough. My 92-year-old mother's anxiety is not being able to "help her kids". My DH's "anxiety" is being too burdensome. Well we've learned that the key is very blunt and open communication between us and with our trusted advisors (medical, financial, etc.) None of us is helpless ever. We all have critical abilities and energies to offer each situation and we must appreciate and focus on being happily interdependent which keeps us feeling valuable and purposeful. We are committed to living as a happily interdependent family and DH and I are focusing on the next 30 years of meaningful partnership as we travel the many paths this life's journey presents. I learned a new word this holiday season. "Smultronstalle" (umlaut over the a). It's Swedish and means a "a special place discovered, treasured, returned to for solace and relaxation; personal idyll free from stress and sadness". May you know and enjoy your Smultronstalle throughout the rest of a very long and satisfying journey through life. Welcome aboard. I look forward to sharing with you. Peace LHG
  14. Chava, Doctors are advisors (and hopefully experts in their "subject matter") as are lawyers, architects, accountants, clergy, counselors, and even sales representatives. Our society doesn't accept this fact as much as it should. No one knows your body like you do and you are the only one who must live with it for the rest of your life. Having intelligent and blunt discussions with the advisors we consult is our responsibility. Don't for a minute doubt your actions. We too were a bit unnerved by our PCP not agreeing with our neurologist's diagnosis at first, and like you he did not diagnose PD a year earlier when we first discussed the symptoms. (This fall DH did have a DatScan and it confirmed PD not ET.) Sounds like you are on the right path with your processing of the advice and treatment(s) you have received and that is what counts. It is unnerving when our "trusted advisors" give us conflicting information or recommendations but trust yourself and your husband to come to the decision that is best for you. All the best to you as you process this new development in your life's journey. Keep checking in to this site, I've found those who read and respond to be insightful and comforting. LHG
  15. Murray, You know best about what risks are "worth it" for you and the life you plan to lead. Remember, spinal fusion was also a "bit risky" and yet that was exactly what you needed, no? I had my C4-C6 vertebrae fused (with a titanium plate screwed in - just for fun) in Feb. and everyone was cautioning me about how scary and risky it could be. Well, I had it done "out patient" - I came home that evening and enjoyed a beloved college basketball game on my own TV that night. I went back to work in two weeks and yoga practice in four weeks. Point being, you know your body better than anyone else. You've consulted great resources and I'm sure you will make a great decision with excellent results. Here's wishing you all the best this Thanksgiving season and always. Keep "us" posted - best. LHG