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Golden01

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Golden01 last won the day on June 14 2016

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About Golden01

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  1. 30 yo Husband diagnosed with YOPD

    Here are some ideas: Check the PWR! site for therapists anywhere in your state. You may have already done this. If you do find some, call them and ask if they could talk to the therapists close to you and tell them about the benefits of going through the PWR! training. professional-directory Contact physical or occupational therapists in hospitals or outpatient facilities and see if you can interest them in going through PWR! training for therapists. A real opportunity to expand their practice. Consider going to Tucson (I'd wait until the weather cools off and I live in Arizona) and do a 1:1 session with Becky and her staff. (3-5 day 1:1 physical therapy) Pricey but worth every penny and Tucson is a great place to visit late fall or in the winter. They have just started taking some insurance plans. pwrmembership (look at the lower right hand corner of the web page). Follow up with LAD about how they started classes in their area and call the PWR! folks, during the 2017 Retreat in Scottsdale, there were several people who had started PWR! Moves, Rock Steady Boxing, and more. They collected names and were going to do an e-mail list of how people got things going. You could probably be added to the list. Some had NPF grants ($5,0000 or so) and others worked with a PT, boxing gym, trainer, etc., to get the training and then start the classes in their hospital or gym. Best story was one couple whose son-in-law happened to be a personal trainer and worked in a gym with a supportive owner! That precious fellow attended the retreat with his in-laws! I asked if he had a brother!! You can also start with the videos and book on the PWR! website but not as helpful as having a trained therapist. With a trusted physical therapist and a yoga instructor, you have a good head start! Maybe next year, you could come to the PWR! Retreat and they could come as a volunteer therapist! Last, but not least, if your husband isn't seeing a Movement Disorder Specialist, you might think about making the drive to one of the cities you. mentioned to see the best one you can find. I believe care from a MDS really does make a difference and they may be able to support you getting community exercise classes in your community. One more idea, my son lives in Hawaii and when we go to visit, my husband goes to special Parkinson's classes through the YMCA there (we went to more than one location). A community center or hospital in your area might be interested in starting something similar. I don't think they were PWR! trained but the classes were good (a little less intense as PWR!). Good luck! In my humble opinion, Parkinson's is not for sissies! I get tears in my eyes when I watch how hard my husband and my sister work to exercise during the PWR! Retreat.
  2. 30 yo Husband diagnosed with YOPD

    Just saw this link on FB - seems timely!! family-values Soania Mathur "Family Values" Parkinson’s wasn’t part of Soania Mathur’s parenting plan, but talking to her kids about her diagnosis helped make her a stronger mom.
  3. 30 yo Husband diagnosed with YOPD

    My husband was 52 when he was diagnosed so I know our fears and concerns were not the same as yours might be. My thoughts on what you might find helpful is to find other YOPD families, knowing others in your situation can be helpful; run, not walk, to the best Movement Disorder Specialist you can find; and look for those Parkinson-specific exercise programs. PWR! Moves has been life-changing for us. http://www.pwr4life.org/ Good wishes to you and your family. NPF offers lots of resources.
  4. Building a new home & looking for suggestions

    http://www.bendbulletin.com/health/5326810-151/want-to-age-in-place-plan-ahead Good article.
  5. Specialist Appt Tomorrow - what would you ask?

    Ask for: Referral to a PD-specific exercise program (like this one - https://www.pwr4life.org) Referral to a Registered Dietitian Nutiritionist with experience in PD
  6. Be afraid, very afraid . . . la-fi-hiltzik-trump-disabled-20170522-story.html Hope NPF and others come out with strong positions on this one. SS Disability is a benefit we pay for through our payroll taxes and a lifesaver for many with Parkinson's disease and other debilitating conditions. "Disability insurance is an inextricable part of Social Security. It’s a core part of the program, just like retirement benefits. It was created as an add-on to Social Security in 1956, under President Eisenhower. It’s financed by the payroll tax, and the reserve funds that cover both aspects of the program are more entwined than ever, thanks to a reform measure passed by Congress in 2015."
  7. Anesthesia question

    Advice on coming off Azilect varies between doctors and probably with the the type of procedure and anesthesia needed. Always check.
  8. FMLA

    Yes - one of the members on my team at work has two FMLA plans approved at this time. One "intermittent" to care for her mother and the other for her medical needs due to recent surgery and follow up PT. Here is a good link that explains more: https://www.dol.gov/whd/fmla/
  9. Constipation

    Fiber, lots of fiber. Fluids, lots of fluid. Metamucil and Miralax. Colace. Probiotics (VSL3 is a an expensive but good one). Yogurt every day. On the old nutrition forum there was a recipe with applesauce, prune juice, and bran. We used it until my husband was diagnosed with celiac disease ad couldn't eat the wheat bran any more. Constipation can be life threatening. After nearly needing an ER trip sand several night-time calls to the doctor, we keep an "emergency kit" of bottles of Mag Citric and Fleets Enema Kits. Never need to use the "emergency kits" once we kept it on hand.
  10. Inosine - A Drug with REAL Promise for the Future

    My husband's MDS is enrolling folks in an inosine trial (my husband doesn't qualify). She is recommending against him doing inosine on his own until the results of the trial are known but is checking his uric acid levels. The first one was on the low side so are working with diet to up (high purine, the opposite of the diet for folks with gout). He just had his blood drawn to check after 3-4 months and we'll see if it has gone up some or not. We might go ahead with the inosine if the level is still low although we don't usually not follow the MDS's recommendations!
  11. New website by Kathrynne Holden

    Thanks for sharing.
  12. So, the dystonia thing is legit

    Has anyone had botox shots in their back? My husband has worsening back pain and the experts (MDS and back surgeon) feel it is probably tight muscles (not calling it dystonia) rather than a worsening of his degenerative disc disease. Botox and stretching therapy are recommended.
  13. Morning Sinemet Dosing

    Does morning C/L make you really-really sleepy?
  14. Need help - Dad having a serious delusion

    You are a great daughter! Welcome to the forum.
  15. Martine Shkrelli's claims about Hillary Clinton and PD

    I forgot about his soft voice. LOL - I'm not a doctor and I'm watching the Olympics not news this week.
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