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Dancing Bear

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Dancing Bear last won the day on September 11

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About Dancing Bear

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    Advanced Member

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  • Gender
    Male
  • Location
    The Great Southwest USA
  • Interests
    Flying, Reading, Travel, Family, Golf, Mentoring

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682 profile views
  1. Getting to thankfulness

    I am thankful to have been blessed with the years I have lived, the experiences I have had, and the family and people around me. PD has fined tuned my priorities and sense of time like LAD discussed. We are all going to die some day, few get to choose, and I do not take the next hour or day for granted. I am just as vulnerable to be killed in a car wreck, or due to the mistake of someone else, by some other disease yet to come-- who knows? I look ahead and not behind. PD is another personal challenge in my life and Lord willing I will continue to deal with it.
  2. PD is another one of life's challenges to be reckoned with. I was almost relieved to be diagnosed with PD since there is a streak of Alzheimers cases in my family history. Throw all your troubles in a pile with everyone else's then see what is in that pile and you might be grabbing yours back again. Reading about the PD complexities of others on this forum is enough for me to be thankful for the cards I have been dealt. Trying to show some compassion and support of others is important to me. My biggest challenges lay ahead so here in my mid 60s, with most of my marbles and physical capabilities, is still "prime time" to enjoy travel, family etc. Preparing for the future is also a priority. No time to waste. In the list above I would start out with finding another neurologist........hopefully an MDS! Using the internet and my care team to learn as much as I can about PD is a great defense for many bullets on the list. PD is not my identifier or legacy.
  3. Bible Verses....

    James Ch 1 v 19-21 Wherefore, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath. For the wrath of man worketh not the righteousness of God. Wherefore lay apart all filthiness and superfluity of naughtiness, and receive with meekness the engrafted word, which is able to save your souls. (KJV) Isaiah Ch 59 v 18-21 According to their deeds accordingly he will repay, fury to his adversaries, recompense to his enemies; to the islands he will repay recompense. So shall they fear the name of the Lord from the west, and his glory from the rising of the sun. When the enemy shall come in like a flood, the Spirit of the Lord shall lift up a standard against him. And the Redeemer shall come to Zion and unto them that turn from transgression in Jacob, saith the Lord. As for me, this is my covenant with them, saith the Lord; My spirit that is upon thee, and my words which I have put in thy mouth, shall not depart out of thy mouth, nor out of the mouth of thy seed, nor out of the mouth of thy seed's seed, saith the Lord, from henceforth and for ever. (KJV) Romans Ch 12 v 17-19 Recompense to no man evil for evil. Provide things honest in the sight of all men. If it be possible, as much as lieth in you, live peaceably with all men. Dearly beloved, avenge not yourselves, but rather give place unto wrath for it is written, Vengeance is mine; I will repay, saith the Lord. (KJV) John 16 v 33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world. (KJV) Charleston, Nashville, Las Vegas, Sutherland Springs, and New York City to name a few. The tragic shootings and violence in these places evoke heartbreak, anxiety, fear, and anger. These are natural human reactions to murder and evil. However, the bible says the anger of man does not accomplish God's righteousness. He says to cast our care, worries, and fears on him. Time and again we see and know that not everything is fair and just in this life as long as there is imperfect human agency and evil. The word of God and his promises are calming and of comfort in these times. He knows all and will be the final judge!
  4. planning for the future

    Don’t forget the financial planning aspects if your husband handled all that. Do you have a family member knowledgeable in your estate etc? A financial planner or advisor?
  5. Some advice please

    Sorry to hear about your dad's apparent PD progression to another level. Hopefully your dad's neurologist is also an MDS. The best thing to do is document all the symptoms and pass them along to the doc. I have been reading about Lewy body dementia and it sounds like your dad possibly has some of the common symptoms for this-- visual hallucinations, sleep issues. You may want to read up on this before your appointment. I am not a professional, just a PWP. Question the doc about this if he or she doesn't talk about it.
  6. Photography and Parkinsons

    Scott, Enjoyed your website and especially the landscape photos! Well done. I am not a professional photographer but enjoy spur of the moment shots. Most of my better landscape pics were situational during my flying career and taken at 35000 ft with an iPhone.
  7. Insurance? I'm only 57.

    Agree that you need to get insurance nailed down before proceeding further. There is a gap of info in that I don't know if you are covered through work already and can easily move between plans or if your husband is the primary covered and bread winner. Don't know if you gang has special health issues or other circumstances to stay with certain providers. I have been on my large company's plan through diagnosis and a couple years after that. I also have Tricare through military retirement as a secondary. Thankful to have both although after initial diagnosis for PD I have been cruising along with symptom control only so far as a slow progression case. My opinion is that a traditional PPO plan is better for max freedom of choice of providers ( for all my and my wife's maladies/providers) and there are some higher deductible PPOs in my company's family of plans. It really kinda depends on your current location, quality and number of providers, and what is available at least for the next insurance cycle. Next year I turn 65 and officially retire. If I want to sign up on the same company plan I have now it will be alot more costly so I will probably go with Medicare and Tricare only. I have been counseled that it is better to sign up for the company plan then suspend it. If you ever need it you can get into it again. If you refuse it it is gone for good--no opportunity to get it back again. At least for my company's plan. I think the Phoenix area had good Parkinsons support. Don't know about Tuscon, AZ
  8. Boy am I new to this

    You are in the right place on these forums. Agree with just about everything stump put out there. Attitude critical. Being in good shape a plus. Switch to an MDS if possible if you don't have one. Learn all you can about PD and be an "informed consumer" with your caregivers. There are some very educational fact sheets at www.pdf.org as well as this website. For me I have found that the disease progression on the physical movement side is on a different track than the mental cognitive side and it differs per individual of course. The drug equation requires periodic attention in terms of what your take as well as strength and frequency/interval. I did not need any drugs for first year at age 60 with a right hand tremor like yourself and have progressed from there over 4 years. There are some good discussions about meds on both the doctor and pharmacy sections of this websites forums. Every new drug introduced to me was carefully titrated up to the desired dosage. You are a cancer survivor and will deal with PD head-on and well I think once you get your bearings on this! Hang in there!
  9. Big News?

    My MDS estimated at least 15-20 years for a new drug/cure for trials and FDA approval and then if it is too expensive the drug companies may not produce it since it will not get much insurance company reimbursement interest (profits). Can anyone provide a sanity check on this estimate?
  10. Shifting subjects....who has cut the cable cord?

    Thanks for the info posted so far. I am researching the different boxes right now (Roku etc) and have found several useful comparisons online through the magic of Google. Roku seems to be the best for content selection ala carte. Still pursuing a DVR option to record programs.There is definitely some opportunity to save money. I will always have Cox for the internet service alone and may transfer my local phone service to Cox to save about 45.00/month from what I pay now. I could go cel phone only if I can convince my partner....... DB
  11. Need some help from those more enlightened than myself on this topic. Trying to reduce my costs of living in the cable department. I am on Cox Cable but would like to trim back cable expenses. Does anyone use Roku, Slingbox?, Apple TV etc. There is a wide array of equipment no doubt. We watch movies and content on some of the premium channels as well as Netflix and Amazon. My wife like her programming on the regular channels but also likes to save programs to DVR while we are traveling so that has become a hardcore "requirement". Anyone care to share their battle with the cable cord? If you use one of the streaming devices please share the positives and negatives as well. Thanks in advance! DB
  12. Finally sleeping about 8 hours - just amazing

    I am in the transition from Sinemet to Rytary so we will see how it impacts sleep patterns in the next few weeks. For the most part to date I wake up stiff on the side I sleep on-- CPAP allows me to sleep well with little movement. I have gotten some leg jitters from time to time before sleep if I watch TV in bed (Myclonic?). Linda, my avatar is temporarily a tribute to the venerable F-4 Phantom II I had the pleasure of flying early in career #1.
  13. Finally sleeping about 8 hours - just amazing

    I hear a healthy dose of Franklin's BBQ helps...... I have been doing well on CPAP for a couple years but lately have started waking after about 5-6 hours. Wonder if a dose of sinemet before bed might help?
  14. traveling with pd

  15. UNLV Gait Study

    Any PD folks in Vegas available? Short term 2 week participation. They need approx 8 more people. Contact Kathy directly if interested or questions Subjects Needed for Gait Training Study in Parkinson’s Disease The Neurophysiology of Movement Lab (directed by Dr. Brach Poston) and the Gait and Balance Lab (directed by Dr. Merrill Landers) at the University of Nevada Las Vegas are looking for persons with Parkinson’s disease to participate in a research study involving gait training in Parkinson’s disease. Study participants will be asked to perform a gait training protocol that involves walking on a specialized treadmill while receiving non-invasive, painless transcranial direct current stimulation of the motor cortex area of the brain. Participation in this study will require completion of 9 gait training sessions over a 2 week period each lasting about 30-45 minutes. In addition, 4 testing sessions will be done (1 on the first training day, 1 after the last training day, 1 two weeks after the two week training period ends, and 1 four weeks after the training period ends). All experiments will be performed in the Gait and Balance Lab, which is located in the BHS Building at the University of Nevada Las Vegas.  We are recruiting male and female Parkinson’s disease patients between the ages of 30 and 85 for this research.  We cannot accept persons who have suffered a neurological or peripheral injury or disease with a possible long-lasting effect on gait function.  Finally, we cannot accept people who have shrapnel or metal fragments in their head or people who have implanted medical devices such as pacemakers or deep brain stimulators. Participants will be compensated $100 cash for completing the experiment. If you are potentially interested, or for more information, please contact: RESEARCH ASSISTANT: Kathy Nagle kathleen.nagle@unlv.edu Lab Phone: 702-895-5473 Cell Phone: 216-650-3204 PRINCIPAL INVESTIGATOR: Dr. Brach Poston brach.poston@unlv.edu Office Phone: 702-895-5329
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