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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
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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. 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
  2. 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
  3. 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
  4. 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
  5. 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!).
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. Hi Concernedcg, As others have said - welcome. I too am the "cg" in our partnership. DH (dear husband) was diagnosed in July and this was confirmed by DatScan in early Oct. He too is 57. We're scheduled to see a Movement Disorders Specialist in February (their waiting lists are very long). We both felt overwhelmed and "unfairly treated" by nature at first and we still go there sometimes until we remember that it's not the "hand you're dealt, but the way you play it" that counts. Make sure you take care of yourself too. Remember the airline attendants' words - "Put the oxygen mask over your own nose and mouth before helping the person next to you". I don't mean this in a negative or selfish way, but if you don't take care of yourself you'll be no good to anyone else and remember, your DH isn't helpless. Sharing my worries and needs with mine gives him reassurance that I will always need him and that we will walk this journey hand-in-hand. This is a great group of caring, knowledgable, experienced people. Keep reading and sharing whenever you need/want to. Maybe one of the "silver linings" with PD is it forcing us to "slow down" and appreciate the little things in life we used to "rush by". All the best. Lonnise
  12. Welcome Chava. As others have eloquently replied already, we're the class of 2016 who never intended to be in this "club" but are grateful we're in good company. DH (my dear husband - the PWP) and I "joined" in July and were "confirmed" by DatScan in October. This is a great group of folks who can offer personal insights and, maybe even more importantly, compassion and emotional support. Read and write as much as you want and remember you are not alone. Best wishes for a long journey with many positive experiences. I look forward to sharing with you. Lonnise
  13. NN - Always tough to make "big life decisions" but it is great to have choices and options. As with all PD journeys (as you and others told me when I joined this forum) yours is unique as will have to be your decision about future planning, but good for you for planning. That IS critical. Don't know if it is at all helpful, but from a "daughter's perspective" I am eternally grateful to my parents who chose to move to a retirement community closer to where DH and I lived when they did (it was when they were in their mid-seventies). As Feisty so eloquently advises others in other posts, get your legal and health paperwork in order now - your children will be forever thankful even if they never come right out and say so. Also, make plans and deliberately choose to try to be living a lifestyle in a location that allows you to enjoy the little miracles of everyday, and to live joyfully and interdependently. I am blessed to have a Mother who chooses to be accepting of what she doesn't control, who focuses on what she can enjoy and who remains constantly appreciative of what she can do even though it's nowhere close to what she used to do. I can't keep her from struggling any more than I could take my father's or in-law's suffering and struggle away as each of their lives ended nor could they do that for their parents and so on. I am grateful beyond words that my parents chose to live their lives as best they knew how and, to paraphrase Maya Angelou, when they knew better they did better. They also "owned" their choices and communicated them clearly which makes it easier to spontaneously offer help when and where I can without judging or being judged. Best of luck with your decisions and don't feel you have to rush them. Peace LHG
  14. Hello Neuro Adventures and welcome to the forum - great name by the way, As far as seeing an MDS without planning on medicating, I wouldn't worry about that at all. DH and I will see the MDS we want to next Feb. and we've not chosen (yet) to use Azilect which is what the dx'ing Neuro. recommended (he was "surprised" we haven't started it, but he's not pushing). I think we will work at trying to manage symptoms through exercise and diet for as long as we can and then when that's no longer "enough" we'll consider medications. I think you are on the right track and I'm glad you are on the forum. It is a great place with great resources - echo WW1's reminder of the Dr./Pharm. forum. Best of luck with everything, let us know how you're doing. LHG
  15. The words in black font are from FF's post, the blue font are my thoughts - I'm still trying to figure out the most effective way of posting especially to select sections of others' posts. This "experiment" didn't quite work the way I thought it would. I'll keep experimenting. FF - Whenever I make such requests, such as finding medical proxies for myself, I always say I don't want an answer today, I want them to think about it and I won't be hurt if they say no, in this situation honesty is incredibly important. After that you will hopefully have a list of people who can be called on to help. We updated all our necessary legal documents a couple of years back (and had my 92 year old Mom do the same) so these are all in place with each other as the other's proxy and then one alternative, but I worry that one is enough. We probably don't need to "re-update" the documents right away, but it needs to be on the list especially since we live "far away" from family and our closest, life-long friends. We refer to these folks as "Framily" since our biological relatives are very few, (no children, one sibling, a few cousins, but only 2 with whom we keep in contact beyond holiday cards). Our friends in the neighborhood are our age or older and two live in other states most of the year. I keep thinking we need to make sure there's at least one person on each of our medical proxy lists that we most likely won't out live and/or who won't decline or develop disabling conditions before we do. Just wish I had a way of "finding" people like this and then getting to know them well enough to consider asking them. I'm sure it will come to me in time - its just been on my mind lately especially when I continue to see excellent posts about getting "things in order" and getting on with living. It's helped just to write out my thoughts - so thanks for "listening". FF - Several of my closest friends are aware of the mental symptoms of PD, and know if I start showing them they should raise their concerns to me and/or my 3 closest friends. My 3 closest friends know that should I ignore their concerns they should call my doctor and tell him themselves, they know I have signed the paperwork so my doctor can speak with them. What did you use to "educate" your friends, or did they do that on their own? I think the "booklets" that NPF makes available (for free) in their bookstore are very useful and readable, I just didn't know if you had another recommendation. FF -and becuase it can't be said enough, take care of yourself. SAME to you FF, you're a treasure. FF - I hope that something I said helps. Hang in there Almost everything you write seems to help... Thanks. -Fiesty - LHG