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Golden01

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Golden01 last won the day on March 1

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About Golden01

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  1. 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.
  2. 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.
  3. 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.
  4. Golden01

    Disability

    Coach, Any progress on the disability front?
  5. 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
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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.
  11. Golden01

    Space is your best friend

    Thanks for the thoughtful answers! Genden69, Your words brought tears to my eyes as you put into words what I think my heart already knows. We are heading to Hawaii for a visit this spring so will have those important discussions. Miracleseeker, We live in Arizona and travel often Nebraska where our moms (age 93 and 87) still each live on their own. We know how much difference temperature makes on my husband's PD symptoms! It will either be Arizona or Hawaii for us. This conversation has also helped me think the difficulties of being further from Nebraska would bring for us too. Travel time from Honolulu to Nebraska is generally 10-15 hours (think how stiff my husband would be), with more than one plane change, and fairly expensive. We can get to central Nebraska on a direct flight from Phoenix in under three hours for less than $100. Lots of food for thought this morning, Glad we have the next couple of years to get it all figured out.
  12. Golden01

    Space is your best friend

    Important topic. My husband (he has PD) and I have lived in our house for more than 30 years. I am retiring from work in about two years. We know at that time we have to decide if we should renovate to "age in place" or sell "as is" without any renovation and take steps to move to a place that provides stages of care. Not an easy decision. We've been looking at finding the kind of renovation experts that can help us with what it would take to "age in place". Complicating the decision is that our only son lives in Hawaii (we live in Arizona). Would it be better for us to sell our home and find a place with varying levels of care in Hawaii? Lots of decisions. Also, I've always had renovations in mind for once I retire. To sell "as is" will be hard for me! We have neighbors that plan to "age in place" but just renovated a master bath with a step in shower and large glass wall. We'd be looking at a "zero access" shower with a bench! Deciding floor coverings is a big decision too (we currently have carpet). My neighbors and my sister (she has Parkinson's) have gone with hard wood floors throughout (easy for a walker or wheel chair). Any advice, observations, or suggestions will be appreciated!
  13. Golden01

    Early PD and vigorous exercise

    Another thing, from where I sit, is making sure you are adequately medicated so that you can exercise. It is a fine balance. My husband and sister both tried to delay medicine as long as they could (not really recommended now) but found that once they had the right balance of medications, they could exercise more. PD is complicated and there is no one size fits all.
  14. Golden01

    Early PD and vigorous exercise

    All exercise is good but my experience has been that the Parkinson-specific difference makes all the difference (like BIG, PWR! Moves, RockSteady Boxing, Dance for Parkinson's, etc.). Check out the info on the PWR! Retreat to be held during May in Scottsdale, Arizona - http://www.pwr4life.org/pwr-retreat/ Amazing opportunity. Life-changing for my husband and me and for my sister and her husband.
  15. Golden01

    How to increase Energy PD patients

    fire1fl - Great routine! From where I sit, Parkinson's-specific exercises make all the difference for my husband's symptoms and increasing his energy. We live just a few blocks from the Muhammad Ali Center in Phoenix so he goes to 5-7 classes there each week. I can't begin to say enough good things about PWR! Parkinson's Wellness Recovery in Tucson. http://www.pwr4life.org/. Consultation with Dr. Becky Farley and the participating in the PWR! Retreat has been life-changing for us. The difference between just exercise and the PD-specific exercise have been night and day for him. Even a few days with out the specific-PD exercises, his symptoms get worse.
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