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Golden01

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Golden01 last won the day on May 18

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  1. Golden01

    Anyone stopped by police? how did they treat you?

    LOL - Several years ago, my husband picked me up in the evening after a long day of work for each of us. A few blocks from my office, he was pulled over by a city policeman and put through a very-very long sobriety field test. The officer said my husband had swerved out of his lane when when making a right turn. The truth was, the officer had several "trainees" or "observers" with him and wanted to give them the full picture of all the possible maneuvers. My husband explained right away about the Parkinsons Disease but it didn't make any difference. The officer did not ask for him to complete a Breathalyzer test since it was clear from the beginning he had not been drinking. The officer came over to the car and told me that I needed to drive home and that my husband should not drive when he was tired. I can still see that whole group of folks watching my poor husband try to do everything the officer asked. The next day, we ordered the card from NPF that indicated he has Parkinson's and wasn't drunk. A similar card is now in the Aware in Care Kit and can be printed off. My sweet husband has carried that card every since we were stopped that night but has never needed it! https://parkinson.org/sites/default/files/P135-PF-002-E-MedicalAlertCard-20171101.pdf
  2. Golden01

    Working with Parkinson's?

    Go for it . . . I'd say work as long as you feel you are able. My advice would be talk with your doctors about it often. Then, if down the road, you need to apply for disability their concerns will have been noted in your medical record. My husband's MDS noted concerns about him working at the very first visit (soft voice, etc.). He worked seven years following his diagnosis until symptoms interfered (had a time-pressured, multi-tasking job). Once he went on disability, his symptoms actually improved as he was able to exercise, sleep, etc. If your employer has a long-term disability policy, it is even more reason to keep working at the same job. Should you need to stop working down-the-road, the disability income will be important. My husband's employer provided a company to assist with the Social Security Disability application and it was approved on the first try. Good luck!
  3. http://parkinson.org/Summit Check this out. Attend free in-person in Phoenix, AZ or at a remote viewing site! Should be a great meeting. I am registered and hope to see you there!
  4. Golden01

    Who's on your healthcare team?

    Recommend an Occupational Therapist and a Speech Therapist. We've found a specialist in Internal Medicine is best for the "family doc". Finding a urologist that knows PD has been challenging. For the nutritionist be sure to locate a "Registered Dietitian Nutritionist (RDN)" who works with PD patients. Here is a place to start: https://www.eatright.org/find-an-expert
  5. Golden01

    Shower fall!

    Oh, my . . . . glad he is okay. Makes me think we may need to make the decision about moving or staying put and remodeling to "age-in-place" more safely sooner rather than later.
  6. Golden01

    Disability

    Not easy . . . good luck with the disability application. Because she is under 55, they may look at "unable to do any job". My husband was over 55 so they only considered whether he could continue in his past profession. They did offer "re-training". He politely listened to the young man who called to offer the Social Security services but declined. He had already completed a "Trial to Work" while working part time the year before he was approved for full-time disability. LOL - Do you need to take control of the DBS controller? Might be like watching TV in some families.
  7. 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!
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. Golden01

    MDS - yes or no

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

    Disability

    Those work credits are the key.
  15. 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.
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