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Golden01 last won the day on May 18

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About Golden01

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  1. Golden01

    medicare coverage

    Check all the details in the supplement plans. Many follow Medicare rules and may be subject to that dollar limit. The rules supposedly changed last year or so about those limits but check very-very carefully. In our community, $2,010 would not begin to cover 44 visits.
  2. Golden01

    See an MDS or continue to monitor as per my neurologist?

    I vote for an MDS . . . depending on their evaluation, you can return to your regular neurologist or stick with the MDS. The higher level of training and expertise can really make a difference in management of disease. Just my food for thought.
  3. Golden01

    Social Security Disability...who has been denied w/PD?

    As Hunter Dan says, "paperwork in order and the proper teminology while being asked about it help". Consistency on the various forms (and over the years) really is important. When my husband's MDS changed practices, she waited to get the copies of the her past forms to before completing the annual form required for employer's disability company so she could be "consistent".
  4. Golden01

    Impulsive Disorder/Pathologica Gambling

    Run, don't walk to your MDS. Take someone along who can also describe what you have been doing. Sometimes, the doctor can just decrease the dose, sometimes you need to get off the medicine. My husband's MDS differintiates between harmful compulsive behaviors (gambling, shopping, sex) and those that are less worrisome (excessive hobbying, for example). Either way, don't delay.
  5. Golden01

    Social Security Disability...who has been denied w/PD?

    From our experience (my husband qualified for SS Disability in 2012 at age 59), a lot of it depends on what your doctor has written In the medical records, not how you look on a given day. His MDS listed out her concerns for him continuing to work (falling, etc.) which were not the same as ours (fatigue, multitasking, etc.). Perhaps we were in denial about some of the symptoms. We stuck with her list (which was well documented in her notes) and he was approved. We learned that at his very first visit in 2005, she had noted concerns about him continuing to work. All my husband's doctors discussed that it is hard to predict who will be approved for SS Disability and who will not. One physician described it as a "crap shoot". All were clear that for people with PD it should be approved with proper documentation. Two things that helped us through the process: First, describing clearly to the Disability folks (not just SS but the private companies as well) what PD is - a progressive neurological disease and there is no cure. Second, we used the words from my husband's internist (more than once). He told us when they asked about continuing to work we should say "My doctor says I cannot work". Hardest for us is that while going through the Disability approval process (oh, the uncertainty was probably harder), we had to focus on what he couldn't do while we had always focused on what he could do. We would write out talking points (ours were all phone interviews) and then after the call go back to our more positive look on life. There was no misleading or misstating of the situation, just a different perspective. Good luck. This is hard. Oh, one more piece of advice my husband's internist gave us - "Remember, HR is not your friend". Proved true for us.
  6. Golden01

    CBD Oil

    My husband uses THC:CDB, 1:1, tincture at night before going to bed. He tried it for back pain and it didn't do much for that but it helps his sleep a lot which decreases his Parkinson's symptoms. Not a marked change in tremors but overall higher energy and better balance. He tried the CBD alone but didn't get the same impact on sleep or Parkinson's symptoms.
  7. Golden01

    The period at the end of the sentence.

    Surrounding you with thoughts of comfort. Your journey with Parkinson's has been long, and you serve as an inspiration to those of us on the path together.
  8. Golden01

    Nutrition interventions

    https://www.sciencedaily.com/releases/2016/01/160105134102.htm For us, I think the strongest research for brain health is the "MIND" diet.
  9. Golden01


    Coach, Any progress on the disability front?
  10. Golden01

    Space is your best friend

    Here is the link to the MJF webinar: https://www.michaeljfox.org/gated-content/researcher_templated_form.php?id=79&et_cid=1052287&et_rid=239696098&et_lid=watch+a+video+recording+of+the+presentation+and+download+the+slidesem_cid It was a good one and they referred to info from an earlier webinar (they didn't repeat the info shared in this one from last year). https://www.michaeljfox.org/gated-content/researcher_templated_form.php?id=72&et_cid=1052287&et_rid=239696098&et_lid=our+previous+presentation+outlining+key+legal+documents+and+estate+planning+considerationsem_cid
  11. Golden01

    Loss of Smell?

    Loss of smell often makes it harder to taste food and sometimes people with PD simply eat less or don't enjoy food as much as they did in the past. This can lead to unintended weight loss which can be a very serious problem. Upping the spices can help some and watching for weight loss is really important.
  12. Golden01

    Space is your best friend

    Still plenty of time to figure out the "age-in-place" or move somewhere else decision. Yesterday, I participated in a Fox Foundation webinar about estate planning and the new tax law. The speaker outlined how fewer people will be able to take deductions for medical expenses do to the higher amount for the IRS standard deduction ($22,000/married couple). He did mention that remodeling your home to accommodate a disability could be a medical deduction that might (along with other deductions, like ones to charity) exceed the standard deduction. It hadn't occurred to me that remodeling costs might be a tax deduction. We live in an old home so will be looking at flooring, widening doorways, replacing stone sidewalk, etc. Perhaps a walker/wheelchair-accessible shower, etc. Wondering if anyone has done this type of work and had it qualify as a medical expense? I have not checked any IRS resources yet. The Fox webinar will be posted but is not up yet. It was an excellent session.
  13. Golden01

    Which Medicare Insurance to Choose?

    One thing to check is how well the Medicare Supplement will cover PT , OT, and Speech Therapy which is so important for people with Parkinson's. Medicare rules recently changed and removed the "cap" on therapy services but I am anxious to see what this means. I am still working and my husband has insurance through my employer with excellent PT and OT/Speech coverage (up to 60 visits a year for each, until January 1 only $15/session, now is $40/session but still only the cap of the 60 visits per year for those services). When I retire I have the option of a Medicare Supplement Plan with a much lower cost per month or the Retiree Supplement Plan (for people with Medicare) at a MUCH HIGHER monthly premium. I had some difficulty finding out the difference between the two but with much "back and forth" and detailed explanations, I learned that the Medicare Supplement Plan available to me follows Medicare rules for approving services (which with the therapy caps was a little under $2,000/year for PT/OT/Speech). The "Retiree" Plan follows the same rules as are in effect for employees so will be identical to what we have now (up to 60 visits a year for each service-PT and OT/Speech). Recently, my husband completed aqua therapy for back pain (yes, it helped!) but the bills were for more than $1,000 per session (we had just the $15 co-pays). We plan to go with the more expensive premiums to keep our access to PT/OT/Speech services. With Medicare removing the caps, this may not be needed but I am worried about how easily we will get approvals for the PT, OT, and Speech therapies or what we might end up paying out-of-pocket (I don't want to have to go back to work after I retire!). He has never hit the 60 visit cap but there have been times he's probably had 40+ sessions (the year he did BIG and LVST, for example). Friends are advising me to go with the lower monthly cost and pay out-of-pocket for what might be needed, I tell them, you don't have anyone with Parkinson's in your family, it just seems to be too big of risk for me. Looking at the current drug formulary is really important too. Make sure the drugs she needs will be on one of the lower "tiers". My mother who is 93 and my mother-in-law who is 87 both have Plan F Supplements and the coverage has been excellent. They both have health problems and have needed some PT but all has been covered. Neither have Parkinson's. A good resource is your state's "SHIP" program. Every state has one and they have helped us with learning about selecting coverage for family members in different states. https://www.medicare.gov/contacts/#resources/ships
  14. I reported the spam posts too. Hope the administrators do something quickly. This could steer people in the wrong direction. Thank you so much for all the links with info on Dr. Hinz.
  15. Golden01

    Recently diagnosed with PD advice welcome

    From where I sit (husband, sister, and best friend from childhood all have PD), here are my thoughts: Run, don't walk, to the best Movement Disorder Specialist you can find (listen to your sister!) Start a Parkinson's-specific exercise program (like BIG, PWR! Moves, Dance for Parkinson's, etc.) Find a Registered Dietitian Nutrition who specializes in Parkinson's and get an individualized assessment and recommendations Learn all you can about PD I'd suggest skipping posts from Dr. Hinz as the posts appear to be spam on this forum. Take a look at other threads for more info.