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Dancing Bear

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Everything posted by Dancing Bear

  1. Apathy - any suggestions

    +1 on Linda's comments. Just have to go get 'er done. I may add that if it is going to get done it will in the first two thirds of the day before fatigue sets in for me! I get up relatively early and by the third cup of coffee around 8am when the news on TV starts to repeat itself I know it is time to get in gear. I try and concentrate on that one or two main "to dos" and I keep a running list for the week and cross them off as they get done. Exercise, as a natural habit< is the biggest challenge for me and my sedentary type B personality. Executive function is taking some hits here and there in the planning stage. That all being said, there are still a few things I used to care about that just don't matter to me anymore! Thats no all bad when productive time is less. DB
  2. Bible Verses....

    Without any attempt to start a thread I post a periodic Bible verse that may be the source of some strength, comfort, or inspiration to my fellow "Parkies" in the best or worst of times as we deal with our challenges. Feel free to add a verse if you wish for those so inclined on this topic. It would be helpful if you mention what bible translation your verse is from if you do post. Have a great week. Romans 8:35-39 (KJV) Paul to the church at Rome Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are counted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.
  3. 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.
  4. 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.
  5. 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!
  6. 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?
  7. 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.
  8. 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.
  9. 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
  10. 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!
  11. 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?
  12. 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
  13. 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
  14. 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.
  15. 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?
  16. traveling with pd

  17. 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
  18. Thinking of and Praying for our Fellow Americans in Houston

    Saw on the news tonight that only 15-20% of homeowners have flood insurance! The financial impact will live on long after the news reporters pack up their vans and go home. The 1000 year storm/flood just happened it seems. Prayers continue for all including the first responders. We are seeing some of the best things about America and Americans come through in this crisis.
  19. Bible Verses....

    Romans 1:16-17 (KJV) "For I am not ashamed of the gospel of Christ: for it is the power of God unto salvation to everyone who believeth; to the Jew first, and also to the Greek. For therein is the righteousness of God revealed from faith to faith: as it is written, The just shall live by faith". (Paul's writing to the church at Rome) John 17:17 (KJV) " Sanctify them through thy truth; thy word is truth." (Jesus praying to his father to keep the church pure) John 8:31-32 (KJV) Then said Jesus to those Jews which believed on him, " If ye continue in my word, then are ye my disciples indeed; And ye shall know the truth, and the truth shall make you free". There are multiple references in the New Testament to the power and truth of the gospel of Jesus Christ. Belief on him and his commandments is a saving faith. We are justified by faith and obedience to the gospel. A thorough study of Romans 3:21 and following reveals any man is justified through faith in the redemption suffered by Jesus Christ without regard to the deeds of the old law. Hope all Parkkies have a "winning" week ahead. To those involved in the education of our children at any level--administrators, support staff, teachers, and parents (education begins at home)......... my prayers go out for you for a safe and effective school year! Everyone one of you is a role model that the kids look up to. A very large responsibility! DB
  20. Sorry you are in such a predicament. Without knowing your age, what type of work you are doing, how close you are to retiring etc I can only contribute initial thoughts. I am in the boat of having PD and close to retirement. - If you have difficulty doing current job is there a less demanding position in same company to move internally? -Avoid being fired for so many reasons. Would rather leave with a letter of recommendation. -Do you have inclination and resources to start your own small business? -cognitive decline has steered me away from school as well but could probably handle short term education like real estate agent certification / licensing etc. Not sure this helps but may spur ideas. DB
  21. Bible Verses....

    Grace........God's favor in the absence of merit. Where would mankind be without it? Ephesians 2:8-9 "For by grace are ye saved through faith; and that not of yourselves: it is the gift of God. Not of works, lest any man should boast." (KJV) Grace......How do we access it? Romans 5:1-2 "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ. By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God." (KJV) Justified..........just as if I had never sinned. I read a commentary on grace the other day that amplifies the concept to me. In Gore Vidal's historical novel based on the life of Lincoln, Vidal pictures a cabinet meeting when it was evident that the South would be defeated and post-war plans were being made. When asked how he planned to deal with the rebels, Lincoln said, "I will treat them as if they never left". That's grace! DB
  22. Bible Verses....

    Luke 19:10 Jesus says....."For the Son of man is come to seek and to save that which is lost" (KJV) Col 4:5-6 "Walk in wisdom toward them that are without, redeeming the time. Let your speech be always with grace, seasoned with salt, that ye may know how ye ought to answer every man" (KJV) If Christians today are Christ's disciples on earth then it is up to us to be more Christ- like in every respect. Our efforts at evangelism should reflect the same mission that Christ himself says he was on earth for if we are to be like him. Easy to forget at times. DB
  23. 23 and me Participants - general PD genetics question

    I have done the 123 and follow-on promethease analysis. Before you do the promethease analysis of the 123andme raw data, ensure you are mentally prepared for all the risk factor mutations that may be in your DNA. Some may not want to know since there is not much you can do about your genes anyway. I have some history of Alzheimers in my family and I did have a mutation risk factor for that disease. Not a worry issue for me--just good to know. There is an entire website devoted to the APOE mutation group. I do have PD but did not have the mutations for that. I had an elevated risk for prostate cancer and sure enough I did have to deal with that successfully this year. Just because you have the risk factor mutations for many maladies does not mean you will get the disease. As has been mentioned in other threads things like lifestyle, and environmental factors have an impact. I personally believe it is important to capture the data from my genetic "footprint" for my children to have and use as they see fit just like family genealogies. For what it is worth. The FDA limits the amount of analysis 123andme can divulge from what I understand. DB
  24. Sinemet, Requip ER,,Azilect

    Is anyone on this combo now? How is it working for you? I will be starting Azilect soon on top of the other two. DB
  25. Sinemet, Requip ER,,Azilect

    The sequence these meds are prescribed in seems different for each of us. I was on Sinemet to start with and after about 2 years Requip ER was added. Now after 1.3 years of that combo Rasagiline was added to help reduce tremor. Dopamine, reduction of dopamine demand, and finally preservation of available dopamine is my poor man's explanation for these meds in that sequence. I guess the objective will be to manage the strengths and frequency over time as the disease progresses. The addition of Rasagiline did help reduce tremor. I agree with Natasha. Hard to tell what is a drug side effect at times vs disease symptom. Mentally I am a bit slower but seem to have less apathy/anxiety than before. There is always the "placebo effect" in play as well.