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Showing most liked content since 03/17/2018 in all areas

  1. 3 points
    Oh, we have four levels of classes. Bob, who was doing the Bosu Ball, is in the "Blue Class" I got bumped into "Orange Class" and like the chart implies, some days I feel like I'm maxed out on 10. The cardiologist has approved my intense workouts, with a bpm hitting 161! Normally I hit 145 bpm. The irony is my resting heart rate is now down to 52 with the working out. Hitting the 6 0 this year, so 161 is considered 100% cardio effort. A definite "9" on the chart. My MDS, PCP, Cardio, Pulmanory, Oncology all have one comment "You look great!" The exercise is a huge part of my medical treatment! I have some other odd stuff going on [ Eosinophils off the chart] but love the new doc. Stuck his head into the office, excused himself, came back a few minutes later and apologized but after reading my chart and meeting me thought he had gone into the wrong room!
  2. 2 points
    Hi Superdecooper, it is funny you call it sleep jealousy.It's like we are now in a kind of sleep competition with our dw.I see it differently,because of our situation.I doubt if any pwp ever gets 8hrs of sleep without sleep aids.If you get 6hrs of sleep with Azilect,that is a big deal.I know that if you stop any PD meds the symptoms will reappear,and unfortunately we are in this for a long run,unless there is a breakthrough for a cure one day.I understand the "why me"question still lingers in the minds of most parkies,because acceptance is a difficult struggle,especially as a young pwp.I guess the earlier one accepts this new journey,the better.It is tough on everyone including the families.Hope is on the horizon,they say.May the major breakthrough happen in our lifetime.Stay positive!
  3. 2 points
    Hi NCFred, Key is to keep exercising. HIIT (High-Intensity Interval Training) is good! Cross-fit is good! Key, as pointed out, is not to hurt yourself but work up to those levels. I had blown out my lower lumbar disc. Think squished jelly donut. Found a great neuro/spine surgeon who explained if I felt OK to walk, keep walking! That helps the spine pump fluid and gives room for those "squished donuts" to come back together. In my case, no sit-ups. I do a modified crunches for ab workouts while the rest of the class is doing sit-ups! Thankfully our coach is great and has different instructors rotate our workouts, all geared for Parkinson's. I found starting the day with 10 Sun Salutations (yoga - google is your friend) gets me moving first thing after I've had my morning espresso. Working out, core exercises (yes planks and pushups with head-shoulders-butt inline have helped the back issues! Bob is rocking the Bosu ball. His rear should be lower, but what a way to celebrate your 80th birthday! Yes that is our class.
  4. 2 points
    Another good one ..."if you can't be kind, be quiet."
  5. 2 points
    Be kind to yourself
  6. 1 point
    Best of luck for Debbie.I''ll remember her in my prayer.
  7. 1 point
    Hi, jb. WE HAD SNOW TODAY IN BALTIMORE COUNTY, MD!!!!!!!!! It has been beautiful, coating each branch on the trees and staying cold enough for it to not just all drip off right away. We kept reading about the southeastern states and the northeastern states getting good heapings of snow, and it was so frustrating that we didn't get the same. So FINALLY we got some before the season is over. Caught up certainly IS elusive. Lack of strength, cognitive issues, and apathy are very challenging to overcome. I find I get so excited when I get even one thing among many done these days. I am so glad to hear you have the support you do for all of the things needing to be taken care of in a farm life. It is hard to have to face not being able to do some of them now. We're with you in mind and spirit. And we understand that it is harder to keep up with correspondence. It's just always nice when you can, and we appreciate that. Take care. Linda
  8. 1 point
    “Without dopamine, one’s ability to anticipate a positive outcome – or positive value – from a choice becomes a powerfully bad influence in one’s overall decision-making process. The default becomes “negative” or “no,” and that is not good.” - tells Peter https://parkinsonsdisease.net/?p=3251
  9. 1 point
    The way I live my life is not in spite of my disease...it's because of it. (I can't remember where I read that but it stuck with me) Choose to stay hopeful, strong & happy! LAD
  10. 1 point
    Every opioid I've had to try eventually gave me a rash. I also never found them to be remotely recreational. Between those I'm highly unlikely to ever have any addiction problems. But I'm also a bit of a wuss when it comes to pain. Since I can't take NSAIDS for a week post surgery due to requiring blood thinners for that time frame I really just need to avoid the need for surgery. For those that need them, and don't abuse them, the restrictions on opioids are a real shame.
  11. 1 point
    I started on an agonist but felt awfully sick and exhausted, and then swapped to Azilect which didn't work as well, but good enough for 6 months or so. I desperately needed something to get me moving properly and make me comfortable again. I think taking meds gets us more active, and being more active means more stiffness when you try to stop meds and give your body that sudden change. Madopar is helpful and tedious like you guessed, but I want to keep working, stay active, and run a muck with the kids, and a few Madopar during the day let's me do that. I don't take them shortly spaced enough (ie no strict schedule) so I still have on/off time. I mentally don't like the idea of that much medication but in reality I'm probably only 1 or 2 pills per day short of not having significant symptoms. If I stopped Azilect then I would have to be much more strict with timing. Sleeping is so variable for me and I don't have the answer. It can be periods of 3hrs a night, to back up to 6. I'm happy with 6, but not with 3. My best sleep is if I've been really active during days prior and a Madopar about an hour before bed. Good luck to you both. I'm sure this is as hard or harder on our families than it is for us so we owe it to them to keep ourselves moving well and positive while we can. In my view, if you can't move well then it is harder to be positive and have those short moments where you can put this out of your mind. I'm hoping as time goes by I can stop letting it occupy my mind. I don't like bothering family and friends talking about PD as deep down I know everyone has their own version of a bothersome struggle.
  12. 1 point
    TURNING POINT with Dr. David Jeremiah--March 18 Peace, Be Still! Then [Jesus] arose and rebuked the wind, and said to the sea, “Peace, be still!” And the wind ceased and there was a great calm. Mark 4:39 In ancient literature, water often represents chaos. In Genesis 1:1, water covered the formless, empty, dark earth. God used a flood of waters to judge the earth in Noah’s day. In Exodus, the Red Sea threatened to destroy the escaping Hebrew slaves. And during the ministry of Jesus, storms on the Sea of Galilee threatened the well-being of His disciples. In each case, God brought order out of chaos; God was bigger and more powerful than the disorder. Recommended Reading: Psalm 89:8-9 There is a lesson there: Whenever chaos or danger appears imminent, our concern is not how big the problem seems but whether God is with us or not. The disciples learned this lesson when a storm threatened to take their lives on the Sea of Galilee. Jesus commanded the storm (the chaos) to be still and peace was restored (Mark 4:35-41). They learned that having Jesus with them was more important than the storm that was against them. If chaos is threatening your peace, let Jesus be your ark of safety in the storm. He can bring peace in any storm. Jesus Christ is no security against life’s storms, but He is perfect security in life’s storms. Wendell Loveless
  13. 1 point
    So, I'm dealing with a mild case of swimmer's ear right now. That just an outer ear infection. Last week the pool filter broke and the gym replaced it on the fly without really closing the pool down or changing out the water quickly enough. This too shall pass. Doc says take ear drops, get some ear plugs, should be gone in about 10 days. I can still swim though. Which is good cause I signed up for swimming lessons at the local community center. I'm trying to learn the breaststroke, the backstroke and the flip turn. On the PD front, I've been waking up with a tremor some mornings - not every day, but often enough. And the occupational therapy for the dystonia in my hand seems to be helping with the pain some and grip strength. I'm supposed to get a physical therapy evaluation next week - I've got some mild freezing going on so I'm trying to pick up a few tricks on how to get up quickly and how to walk a bit more smoothly. I'm also getting some work on knowing where my hands and are placed - hopefully that will cut down on the knocking things over. -S
  14. 1 point
    I appreciate the responses more than you know. In talking to the MDS, he is using the Levodopa challenge as a test of exclusion. He did say that some of the symptoms should have improved after 5 weeks, but they have not. Unlike most diseases, this beast has no simple conclusive testing to identify its presences. Patience is a virtue that hasn’t graced me yet at 45 yo. Continuing the chase for answers. Thank you all for the feedback.
  15. 1 point
    Tjon In my personal experience, I am better off taking an evening dose even if I feel like I don't need it. I find that when I skip doses in the evening, the next day will not be as good. There is some buildup effect over time as well as you adjust. From your initial post, you seem to be on a high dose for someone that is just starting. If I am reading correctly you are titrating up to 1000 mg/day? That's a big dose. When I first started I ramped up over several months to 600 mg/day and found out the hard way that this was actually too high and causing some fluctuations (took almost a year to realize that). I added entacapone and reduced to 300 mg/day and am much better now. Everyone is different but I would recommend asking your neuro about dose schedule and if what you are currently on is too high. It is possible that the rapid titration to a high dose was for diagnostic purposes and not intended as long term therapy. (Some people are resistant to the lower doses, so some docs like to push the dose to make sure they aren't missing a benefit, for those patients that don't initially respond. It sounds like your response is not so much in question at this point though). The usual starting dose is 300 mg / day. The transition to your potential new reality may be hard but just remember that PD and happiness are not mutually exclusive. Many people are scared by the idea of a progressive disease, myself included, but progressive symptoms don't need to result in progressive unhappiness. Stay positive and enjoy the benefit that getting your meds dialed in can offer. Ed
  16. 1 point
    Here's the link: http://besthealthherbalcentre.com/testimonials.html They apparently not only cure Parkinson's, but ALS, COPD, Herpes, and just about everything else. Let's see...first time poster.... claims of a cure for just about everything. C'mon! Where's that eye roll Emoji???
  17. 1 point
    I got very depressed 10 years ago. After five years of up and down I got a bipolar diagnosis (5 1/2 years ago)because antidepressants made me manic. I got a drug induced Parkinsonism diagnosis this November because my first movement symptoms started (4 years ago) after taking an atypical antipsychotic for the bipolar. Yet two years after quitting the drug, I still have motor symptoms, so I was given carvidopa/levodopa(c/l) to see if it would help. If it did that would be a good indicator of actual idiopathic Parkinson’s. Almost as soon as I started the c/l the PD motor symptoms got better but I started rocking back and forth when standing. And random kicking of my leg when sitting. We do not know what this means! The things that have helped me most: A good therapist to talk with every week. Often twice. We are doing Cognitive behavioral therapy and assertive communication training. Doing things I like every day such as listening to comedy or reading. Walking fast. Self care rituals. Naps. LSVT-Big rehabilitation therapy. Doing something nice for someone else every day. Things I cannot handle: Coffee. People talking aggressively, low blood sugar. Rushing, and multiple appointments in a day. The self care and firm refusal to tolerate stressful people have cut my tremors in half! I can deal with being slow and stiff because I’m not going to rush. I can deal with the cognitive slowing because I know I’m a good person. I can deal with the uncertainty because each day has something good in it. Medicine has not been very helpful to me. I’ve had to build a life worth living a little at a time. I keep it very simple and don’t require much of myself except to be kind. I cry good and hard when I feel like it. And I read, watch and listen to a lot of comedy so I laugh a lot.
  18. 1 point
    Thanks for posting, NC.
  19. 1 point
    It's a bit convoluted but here goes: Not sure what type of insomnia you have. Difficulty falling asleep or sleep maintenance problems (you fall asleep but wake up at 3:00 a.m.). I started with the inability to sleep. Was getting about 30-minutes of sleep every three or four days. Felt wonderful in the morning regardless that I did not sleep. My MDS did not think that was a good situation. He's big into sleep as a Parkinson's aid. Parkinson's medications (Carbidopa-Levodopa; Entacapone) really helped me get over the first hump--calming the body enough so that it could sleep. Supplements like L-Theanine that calm the mind (and help my body and brain counteract the side-effects of the C/L); Melatonin; sleep supplements with herbs such as Valerian, Hops and Passion Flower seem to help me more with the initial falling asleep issues but once I began falling asleep, I noticed the sleep maintenance problems. Waking every morning at 3:00 a.m. Tried Benadryl (anti-histamine with diphenhydramine) and while it probably worked the best to that point (on both types of insomnia), the bad side-effects like an inability to really wake up in the morning (felt groggy all day) made me put it away. Mybetriq: Because Parkinson's had invaded my urological system, my MDS referred me out to a urologist whose second or third subspecialty is Parkinson's. The drug seemed to work for about 10-hours before slowing leaving my system, even though the manufacture and FDA claim it works for 24-hours. Used it at night-time to try and eliminate the need to wake up at 3:00 and use the head. Another slight improvement, but not perfect and then it left me exposed most of the waking part of the day. We upped the dose to two-tablets per day (taken at the same time) and it really well. Our next step was to be Botox injections every six months but I'm still hesitating. Later I started probiotics (more about that later) and I'm back down to one tablet per day that helps not only during the waking hours but while asleep. The most help I received for sleep maintenance problems was from people with diabetes and pre-diabetes. Got on this side-note from something my MDS said in mid-2017 about a study finding that while PwP may not have diabetes or pre-diabetes, their bodies were responding to diabetic medications. So I wondered what problems people with pre-diabetes and diabetes were having, and what medications were they using that could possibly help a PwP. About this time I read that some people with pre-diabetes and diabetes would wake up at night and eat a midnight snack, after which they would fall asleep. Apparently high blood sugar or low blood sugar, I can't recall, would spike in them and wake them up at night. Not knowing why they were awake, they apparently felt the urge to eat and the food would then reduce the spike and they would fall asleep again. So I tried a midnight snack at 3:00 a.m. and it worked. My MDS is not thrilled that eating a midnight snack worked, but is happy that I will now only get sleep maintenance problems once or twice per month. (I am not pre-diabetic nor do I have diabetes.) As a midnight snack I first ate a granola bar, then one-half a granola bar, and now generally get by with two whole wheat crackers if needed. Doesn't work all of the time, but for me it has probably around 95 percent of the time. And I'm not sure if my body is re-learning how to stay asleep, but I now only have to use the snack method at most once per week. Many times if I wake at 3:00 I can get back to sleep with yoga style breathing. More recently I also noticed that sometimes it isn't even necessarily the eating of food, but the swallowing of saliva that was needed. So, I will forcibly swallow saliva about 20 times and that seems enough to put me back to sleep. I have no idea why. It's hard to make those swallows at night, especially since Parkinson's seems to want to make my mouth drool saliva through the lips, rather than send it down the back of my throat where it used to flow. Probiotics: major improvements noted with all medications and supplements (for example: marked decrease in the time it takes to get C/L into the system, operating, and it's intensity and duration), constipation and a host of other issues. This boost in medication strength seems to have helped with my sleep--or is it that the probiotics help with sleep? I don't know how they work or much about probiotics, other than they have been an immense help to me. Ultimately, not one item has totally helped me, but rather each has been a baby step forward. Now I'm addicted to sleep and really feel the impact from a good vs. bad night sleep. Okay, probably went way overboard with this explanation, and probably missed the question completely. If so, I'm sorry. I blame it on Parkinson's (and the probiotics, and the sleep that free my mind and fingers enough to write). Cheers.
  20. 1 point
    Hi NCFred - My routine is varied but I try to move for one hour a day minimum - including mat pilates, a bicycle HIIT routine, and 30 min on cross country ski machine 3 x per week, walking (outdoors if possible) for at least 30 minutes daily, free weights lifting 2 x per week. I don't participate regularly (yet) in any PWP classes as I don't find they push me enough but I do like the support aspect. I have found that the nutrition and sleep aspects of my life also hugely impact my symptoms so I follow the biohackers and alt medicine doctors for other ideas. Good luck. LindaG
  21. 1 point
    Hi, DB. Thank you for your post, which clearly explains what we learn through the Bible of why it is necessary and how someone becomes a Christian. I had a hard time understanding the concept of Christ dying for us (even early on in Bible college). I think what made it clearest to me is in reference to #1, above. I heard that God is so holy that anything sinful cannot be in His presence. For some reason, that made it clear to me. It's interesting how some of the simplest things can be made clear by just a certain turn of phrase. I turned to Christ as a young girl through a Christian Bible Camp ministry here in Maryland. I've always been amazed when looking back and seeing all of the influences the Lord brought into my life to draw me to him. My little 7-year-old neighborhood friend and my dad were very early-on influences. A Christian friend of my aunt offered to send me to the camp. I remember in my older years at the camp asking why prayer is said to God and to Jesus, but I was perplexed when someone prayed to the Lord. I asked who the Lord is. A friend explained that that covers all three--God, Jesus, and the Holy Spirit. We laughed together at the way she explained it. Such simple things that I didn't know and more things I am still learning as I go along. It never gets boring. I remember how grateful I was to learn of the Lord's love for each and every one of us and how He longs for us to love Him. His desire is that everyone would come to Him. "No greater love hath a man than to lay down his life for a friend." Jesus said that, and He did just that, out of love for us. He took our sins upon Himself and suffered the punishment for them. For us. And all He asks is that we come to Him--into His loving arms--asking His forgiveness for our sins and committing to following Him. I'd love to hear from others about their coming to Christ. I find it so interesting as to what pulled/lead them to believing in and determining to follow Him.
  22. 1 point
    Today's Turning Point with Dr. David Jeremiah Four Burning Questions—For What Will It Profit a Man… March 10, 2018 For what will it profit a man if he gains the whole world, and loses his own soul? Mark 8:36 Two brothers in Wichita, Kansas, won the lottery, netting $75,000. They celebrated by purchasing narcotics. While using a butane lighter with their drugs, the vapors reached the pilot light of their furnace, causing an explosion that destroyed their house. One of the brothers was rushed to the hospital, and the other to jail. In the literal flash of a moment, the luckiest moment of their lives became a nightmare. Recommended Reading: Mark 8:34-38 Millions of people feel they have won life’s lottery. They’ve accumulated homes and clothes and vehicles and sufficient financial reserves to pay their bills and ensure their futures. Some have become rich. But sooner or later, it will all disappear in the flash of a moment, for without Christ there’s no hope of eternal wealth or everlasting life. The Lord provides for the needs of His children, and He gives us the wisdom to be wise stewards over what He entrusts to us. Our long-term well-being is found exclusively in God’s mercy toward us in Christ Jesus, which is why in all things He must be preeminent. When I put God first, God takes care of me and energizes me to do what really needs to be done. David Jeremiah http://www.davidjeremiah.org/site/magazine/daily_devotional.aspx?display=devoprod&tid=email_edevo-wknd-0310&_zs=tPmw91&_zl=JuhL4
  23. 1 point
    Today's Turning Point with Dr. David Jeremiah Thursday, March 8 No Secrets But immediately, when Jesus perceived in His spirit that they reasoned thus within themselves, He said to them, “Why do you reason about these things in your hearts?” Mark 2:8 When children are very small, they develop a predictable short list of answers to some of their parents’ routine questions: “Did you eat the cookies?” “No.” “Will you go and pick up your toys?” “I’m too tired.” “Please come and help me set the table for supper.” “Okay—in just a minute.” Parents understand these responses because they are childish versions of their own (occasional) responses to their own responsibilities. Recommended Reading: Psalm 44:21 Sanctification involves learning to think and act honestly and righteously before God. And one of the primary motivations for righteous acts and thoughts is that God knows what we think, and what we think about doing, all the time. We have no secrets before God. When a group of men brought their friend to be healed by Jesus, a group of Pharisees took exception—silently—to Jesus’ compassion on the man. Jesus called them out on their self-centered and non-compassionate thoughts (Mark 2:1-12). Jesus knows the human heart like parents know their child’s heart. Rather than be “called out,” far better to have thoughts we are willing for God and man to know. When anger was in Cain’s heart, murder was not far off. Matthew Henry
  24. 1 point
    Awesome! Let me know if you need help. I'm going to be in MD Quite a bit over the next few months. message me.... LAD
  25. 1 point
    Thanks for saring this web site, Ginger LAD. Just what I've been looking for, and I plan to start it soon. Linda
  26. 1 point
    Some days I fight, Some days I cry, Some days I get out bed and wonder why, But every day I walk with my head held high. Because I know, I will get by. Blessing Everyone.