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Golden01

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Golden01 last won the day on May 18

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About Golden01

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  1. Golden01

    PD is not the end

    Rough sledding is a good description right now. My husband had been pretty stable on "little gun" medicines for 13 years. They weren't cutting it and so he's giving up Artane and trying Rytary. Not working out so well, could not keep up in his exercise classes today. Need to give it longer but it is hard. I'm going to use the rough sledding description, we will get to the smooth glide at the bottom of the hill!
  2. Golden01

    medicare coverage

    I've just gone on Medicare Part A and am still working so don't need the Part B or a supplement yet. I have helped my mother (who at age 90 lost her insurance that had been provided by my Dad's employer), my brother-in-law who is on SS Disability and under 65, and my mother-in-law. For my Mom, where she lives there were 34 drug plan and 29 medical plans to choose from and although she does use a computer (email mostly) I don't believe she would have been able to navigate the system and make the choices. We choose the Medicare Plan "F" for her as it was closest to her previous coverage (someone called it the "Cadillac Plan") and was a bit more expensive (<$300 a month) than some plans but she never pays a bill (drugs are another story). My brother-in-law was harder as it turned out the state he lives in (Nebraska) does not require insurance companies to offer Medicare Supplement plans to people under 65 (so they don't) and his choice was limited to a single Medicare Advantage Plan. His coverage is not as good as the plan he had through the ACA plan that he'd been on before qualifying for Medicare. In both cases, we relied heavily on help from the State Health Insurance Assistance Plan (SHIP) available in every state to help people navigate the maze of obtaining insurance to supplement Medicare. I have two friends who recently used insurance brokers and both were satisfied. They were both steered to Medicare Advantage Plans which depending where you live and the plans available may or may not offer the MDS you want to see. Here is the link to find the SHIP in your state: https://www.medicare.gov/contacts/#resources/ships. A book that helped us navigate the maze was: https://www.amazon.com/Get-Whats-Yours-Medicare-Maximize/dp/1501124005/ref=sr_1_1?s=books&amp;ie=UTF8&amp;qid=1533680265&amp;sr=1-1&amp;keywords=get+what's+your+medicare. I also know someone from work who went with an inexpensive supplement and when she got breast cancer, it paid very little. She is now back on the retiree insurance offered by our employer (premiums are higher than supplement she had chosen but her cancer care is covered). Good luck. This is hard. The good thing is open enrollment each year does allow you to change plans. Seems like it starts in October or November each year.
  3. Golden01

    Medical marijuana?

    We live in a state where medical marijuana is allowed but PD is not an approved condition. My husband also has severe back pain (degenerative disc disease but pain probably comes more from the tight muscles caused by PD) which is an allowable condition. He got a card, hoping the MM would help his back pain. He uses tinctures about 1:1 CBD and THC or maybe a little more THC. It did not help his back pain but has made a real difference in his being able to sleep longer and being less "fidgety" at night which helps his PD symptoms overall. None of his doctors will complete the paperwork for the MM card so we go to a "Marijuna Doctor" place once a year to get what is needed.
  4. Golden01

    PD is not the end

    My husband's MDS says if you've seen one person with Parkinson's, you've seen one person with Parkinson's.
  5. Golden01

    CBD Oil

    My husband has marked "fidgety and twitchy" issues at night (especially his legs). The MMJ has helped a lot,. A good night's sleep makes all the difference. The tincture goes under his tongue for best absorption.
  6. Golden01

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

    https://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm#11_06 See the introductory info (esp section C. and the section further down on Parkinsons.
  7. Golden01

    MDS - yes or no

    Agree. See the MDS even if you have to travel.
  8. Golden01

    Disability

    Those work credits are the key.
  9. Golden01

    Disability

    One more thing . . . there are some work requirements (you have to have worked a certain amount over the past so many years). I don't recall what those numbers are as my husband had been working full time. It is another reason to go ahead with a disability application. I've heard of people who stopped working due to PD but didn't file for disability right away (didn't need, thought they'd go back to work, etc.) and then didn't meet the work requirements when they did apply. Something to check.
  10. Golden01

    Disability

    There is an earnings limit so if she is only working a little, she could go ahead with the disability application. The limit this year is $17,040 and for every $2 over the limit, $1 is withheld from benefits. https://www.ssa.gov/pubs/EN-05-10003.pdf The advantage is that if approved for disability, she will be eligible for Medicare after receiving disability benefits for two years. I'm assuming she is not of Medicare age yet so can make a real difference in costs for medical care. For those who quit working completely, the two year wait for Medicare can bankrupt a family. It seems it would be better to start the application process and see where it goes.
  11. 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.
  12. 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.
  13. 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".
  14. 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.
  15. 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.
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