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  1. A big part of making life better for people with Parkinson’s is taking care of the people who care for them. Each person with Parkinson’s is unique, and so is each caregiver. Caregivers have an enormous, often underappreciated job. Here at the Parkinson’s Foundation, we recognize the work you are doing to support your loved one and have dedicated a day just for you. Focusing on Collaborative Care, the 2018 Parkinson’s Foundation Caregiver Summit | Cumbre Para Cuidadores is a free event specifically for caregivers of people living with Parkinson’s disease (PD). Bilingual sessions, in English and Spanish, will include: Intimacy and PD, Communication & Coping Strategies, and Collaborative Caregiving in Action. Summit will be broadcast live from Phoenix, Arizona to satellite locations across the country and online. The content will be recorded and archived for later viewing. In addition to the program in phoenix, we are hosting 15 satellite sessions in the following locations: Columbus, OH Fargo, ND Jacksonville, FL Kansas City Area Manhattan, KS Milwaukee, WI Minneapolis Area, MN Orange County, CA Rochester, NY San Diego, CA San Francisco Bay Area, CA South Florida Area St. Petersburg Area, FL Syracuse, NY Tampa, FL Learn more about the summit and how to participate at Parkinson.org/Summit
  2. Hello, After a month of many tests, my husband was officially diagnosed with YOPD this week. We knew this was a possibility as we were going though testing, but the official diagnosis knocked me off of my feet. We are in the early stages of the disease and just started the Neupro patch yesterday. He is still able to function fairly normally, but has difficulty with writing and typing. We are hoping we can put off Levodopa as long as we can. My husband is only 30, we have a little boy who is a year and a half and were contemplating having another child - and then this huge life changing diagnosis has sent my view of our future in free fall. Our friends and family have been very supportive, but no one knows what to say or how to help. I wouldn't either if I were on their side of the situation. The future is so unknown and some of the posts I have seen on these message boards have really worried me on what we could face down the line. I feel so selfish that I am concerned about how it wil affect me, and not how it will affect my husband. I am all over the place with this post, so I do apologize. I am just hoping someone out there can relate to this post somehow and will be able to give some advice or words of wisdom as we embark on the terrifyingly unknown path that YOPD has in store for us. Thank you.
  3. Hello Caregivers! We are conducting a new 2015 research study about the experiences of caregivers of persons with Parkinson’s disease. Please consider taking the 20 minute survey. Click on the following link for more information. http://mabend.tumblr.com/ Thank you Maryann Abendroth, PhD, RN Northern Illinois University
  4. I’m sending this message today because I am a nurse researcher dedicated to helping family caregivers and would like to share information about a research study. The purpose of the study is to explore factors that influence the well-being of caregivers of persons with Parkinson’s disease. The results will help us develop initiatives to assist caregivers. Your input is important because it offers you an opportunity to be heard. You will help people in the health care field understand your caregiving experiences and find better ways to improve services for you and other caregivers. Persons eligible to participate need to be 18 years of age or older and need to be currently or previously a caregiver of a living person with Parkinson’s disease. Anyone interested in being in the study will complete an online survey which will take about 10 minutes. The survey items will include sharing your caregiving experiences (i.e. how you view caregiving) and asking some demographic questions. Your participation is voluntary. All responses will be kept confidential. If you are an informal caregiver of a person with Parkinson’s disease and wish to take part in this study or would like more information, please send an email to me, Dr. Maryann Abendroth, nursing faculty at Northern Illinois University, at mabendroth@niu.edu or call at (815) 753-0812. Participants will receive a $10.00 gift for being in the study.
  5. sarakay

    Dealing with family

    hi, Does anyone have the problem of dealing with adult children who have really back off from having anything to do with their dad who has PD? One child calls but we have not seen him in 6 weeks. The other does not call, email or correspond in any way in the last six weeks. one is an hour away the other is two hours away in the same state. We know they are busy, have full time jobs and marriages. But surely they could visit or at least call. I have asked them to do this. I don't know what else to do. Any suggestion?
  6. hi, i read in so many posts about how many medications so many people are on who have PD. It amazes me! Isn't there side effects and problems with one med causing issues with another prescribed med? my DH is on carbadopa/levadopa and effexor and that's it! he doesn't even want to take these. he gets choked so easily on food or liquids these day especially in the evening when he is more tired. has anyone else had problems with meds, taking too many or one re-acting with another? What did you do about this?
  7. Frances

    Dealing with dementia

    Hi, I'm new here and need some advice. My mom is 87 and was diagnosed with PD only 5 years ago, although she has probably had it for 7-10 years. Over the last year or two, she has begun to lose some of her memory and reasoning abilities. I've stepped into a more active decision making role in her life. Scheduling things, choosing a new doctor, handling finances, etc. This has been a fairly gradual progression till recently. As her cognitive abilities took another notch down, I had to take over more. I still talk to her about what I'm doing and ask her input. But she doesn't remember the conversations. Then later when something comes up, she will say "Why wasn't I in the loop?" Sometimes I try to remind her of our earlier conversation. But often this just makes her sad or frustrated as it reminds her that she's slipping. She's a very smart and independent woman so I can only imagine how hard it must be for her. Should I try to remind her that she was in the loop? Or should I just say I'm sorry she feels that way? Once I tried to explain to her that her mind is not in a state where it will let her feel in the loop because her mind can't hold on to what we talk about. But I'm not sure that was good either. I love my mom dearly and respect her greatly. How do I help her be ok with feeling 'out of the loop?' or do I just need to be ok with her NOT being ok with it? Thanks for listening and for any perspectives you can share.