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  3. Tamara

    Starting Isradipine

    Hi Adam! How are you now? Do you take isradipine now and what progress do you have? Thank you
  4. noah

    Medication/Food/Symptom tracker

    i just make an excell spread sheet
  5. Linda Garren

    Good morning!!

    ROFL!!!! 😄 You've got the correct pronunciation now, jb!. So the next step is how to spell it. I'm just laughing every time I see it in that sentence above!! I can't help it....!! I couldn't think earlier how it's spelled in a sentence, but I'm pretty sure it is "y'all." But I love the way you've done it. I say go for it and do it your way! Go, jb!!! VioLinda
  6. MComes RPH

    Rytary experience

    DMy experience was pretty straight forward. I was initially taking Sinemet Regular Release about every 4 hours and Controlled Release three times a day. When Rytary came out it showed a great deal of promise for everyone with PD. I tried it with the hope the hope of improving my quality of life. My 3 month period started off with a dose that caused dyskensia, even though the conversion was calculated correctly. The next next dosage was low across the day. The first month ended on a mix note with daily dosages being too many or too few capsules which resulted in fluctuations in on and off periods. The second month consisted of trying to specifically controlling long term symptoms. An attempt was made to add small doses throughout the day. Instead of two doses at once we tried one dose every few hours which was defeating the purpose of the change. The third month consisted of a combination of Rytary and Sinemet CR. The Sinemet CR had to be added for long term control. It was more reasonable to add 2 Sinemet CR's than 4 or more capsules per day. Eventually the decision was made to return to go back of the Regular Sinemet and Sinemet CR therapy. In many people the Rytary has been a change for the positive. I had long term control issues which were better taken care of with controlled release Carbidopa/Levodopa therapy. I hope this helps and please keep me posted.
  7. cereus

    Good morning!!

    Best of luck with that last programming trip, JB. Stay as cool as (we all know) you are ! Diana
  8. lahdedah

    MDS - yes or no

    Thanks for the input. I think I knew the answer but just needed some validation and confirmation. Thanks!
  9. Linda Garren

    Just Interesting Things about This and That

    I hope you enjoy listening to these soldiers. Be sure to listen to the additional songs after the first one, as well. After reading the news on line the last few days, I find this so refreshing. United in song about God and America, such a positive thing after being so pulled down by the news of what is going on in our country that is sharply and painfully dividing it.
  10. Beau's Mom

    Good morning!!

    Hi, jb! I'm happy to hear that the programming is going well. It's cool and cloudy this morning in Seattle but beginning Sunday we'll be having a heat wave. Most homes here do not have air conditioning, so we'll be very warm indeed. Wishing each and every one of you a stress-free day! Dianne
  11. jb49

    Good morning!!

    thanks for well wishes from yawl, It has been real hot here of late, one more trip to Toronto for programming. Hope everyone is doing fine. jb
  12. LAD

    MDS - yes or no

    see the MDS....worth the effort!
  13. Beau's Mom

    MDS - yes or no

    Absolutely, go to the Parkinson's Center of Excellence. You deserve the very best care. Dianne
  14. swva

    MDS - yes or no

    15 miles difference? See the MDS. My neurologist is about 40 minutes away and is not an MDS, but the closest University center with an MDS is about 4 hours away.
  15. lahdedah

    MDS - yes or no

    I was diagnosed in 2013. At that time my family physician recommended I see a neurologist who came to my home town on a weekly basis. He is not a MDS but nevertheless was highly recommended. It was a 25 mile one way trip. I am currently experiencing some problems with medication. When I called the doctor's office they told be he no longer travels and I would have to see him at his office about 60 miles from my home. I like the doctor OK but am not particularly enthralled. About 85 miles from home is a PD Center of Excellence that has about 4 MDS on staff. What has been the experience of folks on this forum? Is it really worth it to see a MDS or should I just save myself the time and effort and make an appointment with the neurologist who is nearest even though he is not a MDS? Would appreciated some input. Thanks!
  16. Last week
  17. swamper

    Good morning!!

    LAD: You will love the Rock Steady training! My DH and I and a coach friend attended the training last October. We have started a RSB group in our small town in Georgia, and it has been wonderful. We have eleven boxers enrolled now, and are needing to find a bigger place to hold our classes. You will find that the need is amazing, as are the boxers. Best of luck! Adrienne
  18. Kara3

    Peeved PreClinical Parkinson's Person

    Thank you so much for sharing your story, McCall. Having a family history has made me more aware of subtle symptoms; although, to me they are very obvious. I would bet many people dismissed years of symptoms before they were diagnosed. Hindsight is 20/20. My mother with PD is 87 and has been in a healthcare facility for 5 years. I was hoping since her diagnosis doctors had gained more knowledge of early diagnosis and treatments. She never shared her symptoms with me, so it was only what I observed as the disease progressed....frequent falls, hallucinations, tremors.... I have already learned so much from reading this forum! Thank you again for sharing your experience. It sounds like you found some good doctors. I will keep you both in my thoughts and prayers!
  19. Linda Garren

    Bible Verses....

    Thank you, Dianne. You are just so sweet. I so appreciate you! And I like what you will be praying for me. Thank you. The most important thing to me is to be close to the Lord, and I know that's an important thing in your life, too. You've certainly had your share and more of difficult situations, and I'm so glad you look to Him for strength and comfort.
  20. Beau's Mom

    Bible Verses....

    Good morning, Linda. I will pray for you and with you that the Light and Love of God will continue to comfort you today and every day. Amen. Dianne
  21. Linda Garren

    Bible Verses....

    Hi, db. Nice to hear from you. Would love to hear how you are doing. I'm doing just ok. Terrible apathy that can't seem to climb out of. After reading through some of the posts lately, it helps to keep in balance in my mind that the Lord has provided so much to me and has gotten me through some much more difficult things than this. I'm ever so thankful for His blessings, and that there is a reason for this "season" in my life. Will do some emptying of my in-box right now.
  22. Dancing Bear

    Bible Verses....

    Thanks Linda, I have heard it preached that for the faithful Christian, the last day on earth is truly the best day of their life because the passage from this imperfect sin sick world to an eternal life in heaven. Hard to get one's mind wrapped around the concept of eternity and perfection with the human mind. How is your summer going? Is your msg inbox full?
  23. SoCalGal

    Dizzy

    Thanks for the info. Hope to get to the bottom of this soon. It has been very hot here in LA and that doesn’t help . Hydration definitely a must
  24. stump

    Dizzy

    Been dealing with that too. Thus far upping hydration has been enough. While that might help for you sounds like it may not be enough. Even if it doesn't do much for the OH it will help in other ways.
  25. Beau's Mom

    Dizzy

    Welcome to the world of nOH, Lorraine (neurological Orthostatic Hypotension). Do you get dizzy when you stand up from sitting or laying down? I get a whoosh! feeling like all the blood rushes out the bottom of my feet sometimes when I stand. My first experience with nOH three years before I got my PD diagnosis. My PCP at the time was telling me that the tremor in my right hand was intention tremor. I knew nothing about PD back then and he didn't mention it. He did order the neck ultrasound you mentioned. I take one medication in the morning for mine, plus a different medication if BP drops during the day. The biggest danger is passing out, so I've been taught to get up slowly and not walk until I feel solid. I check my BP twice a day sitting and standing and keep a record of it as well as when I take the extra medication. Dianne
  26. SoCalGal

    Dizzy

    Hi all, for the last few weeks I have been dizzy. I know sinemet can cause dizziness but I have been on it for 4 years now since diagnosis. I didn’t have this until now. Had a neuro appt and I told him and he said the disease can cause it. Then he took my blood pressure and it was 98 over 70!! I was floored because at the doctors office it usually is in the 140 range. Now he wants an mri of my brain and an ultrasound of neck to see if blood is getting to my brain and also an echo of my heart. Yikes! Anyone else have dizziness? Thanks, Lorraine
  27. McCall

    Peeved PreClinical Parkinson's Person

    I was the first to notice symptoms in my husband's case, he tended to shake a lot when under stress, or hard physical labor, I commented to my son that I wondered if he had PD. So when my husband went to see our Dr. she did a couple tests, mainly the cogwheel test and found he had that and told him he had PD. He also had been losing his balance a lot. I made an apt. for him with the head or neurology at Brigham and women's in Boston. He confirmed the PD again with just a few in office tests so in his case there was no long time till diagnosis. He was 62 than, he is 68 now. Things have progressed quite a bit but he can still eat by himself, and toilet and shower. His balance is quite bad now but he seldom uses his cane or wheelchair, except when out. He has swallowing problems as well and a lot of stiffness, constipation, and urinary incontinence, some memory problems etc. I know that some people have a great deal of trouble getting a diagnosis, but many others get it first thing.
  28. Linda Garren

    Bible Verses....

    The Day I Fervently Asked Jesus To Come Back How a friend's tragic death gave me a new perspective on hope. Caleb Kaltenbach /June 21, 2018 Image: Jake Blucker / Unsplash When I was young and single, I moved to Southern California to work at a church. I didn’t know many people in the area, but eventually I became friends with a couple of guys from the church, and the three of us rented a house together. Having a bachelor pad was fun—late nights, tons of jokes, and inappropriate pranks galore. After a couple of years, one of my roommates got married and moved about 15 minutes away from our bachelor pad. I wasn’t surprised—he was the opposite of me in almost every way you could think: tall, good looking, lots of hair, in shape, tan, and he even worked for the Drug Enforcement Administration as an agent. Once he got married, eventually the other roommate and I went our separate ways. About a year later, one evening near the end of October, I got one of those late-night phone calls that no one wants to receive. My roommate who had gotten married had been killed in a motorcycle accident. He had been riding his motorcycle down a residential street that evening when another driver made an illegal U-turn. My roommate’s motorcycle T-boned the car, throwing him from his bike and hurling him into eternity. It was horrific. I arrived at the accident scene about 30 minutes after the call. Much of the site had been cleaned up already, but my friend’s bike was still in the middle of the street. It was absolutely destroyed. Friends who had gotten the same call started arriving. After a while, many of us went down the street to his house. His young widow was at home, understandably crying her eyes out. The setting of the house gave the false impression that he’d be right back. His drink was still on the counter, clothes were laid on the bed for tomorrow, the TV was on, and his book was in his chair. I half expected him to walk in the door, but I knew that wasn’t going to happen. I sat in his house with 15 other people for about three hours. No one really said anything. There were lots of hugs and sobbing, but no conversations. Every person in that room was a follower of Jesus, so we prayed. We weren’t even sure what to pray, but we prayed. A couple of weeks later, we had the memorial service and graveside observance. I still remember the graveside as if it were yesterday. I’ve attended many gravesides, but I’ve never seen as many people stay for the entire covering of the casket as did for my roommate’s. It was as if none of us wanted to leave, because if we left, we were submitting to the reality that he was gone from the earth. Imagining the Last Day Before I left the graveside, my eyes looked beyond the freeways of Hollywood and fixated on the hills behind Burbank. Clouds began forming behind the hills and started moving almost on top of them. I don’t know how clearly you can picture it, but it was a dramatic scene that touched my already emotional heart. I fervently asked Jesus to come back. But I knew there was a good chance that my timing wasn’t his. I did, however, gain a perspective of hope that day. As I gazed at the hills, I was reminded that the power of God will be seen in supreme majesty when Jesus returns to bring justice, order, and redemption to this world. Closing my eyes, I remembered Paul’s description of Jesus’ return: The trumpet will sound, the dead will be raised imperishable, and we will be changed. For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.” (1 Cor. 15:52–54) Imagining what it would be like on the last day when my roommate would be brought into his new God-given body provided hope. I still have that hope because I believe my God is powerful enough to bring Jesus back from the dead and will do the same for those who follow him. As much as I loathe death, I know that it won’t have the last laugh. God’s greatness deserves our trust and willingness to align our lives with his power. The hope he gives extends beyond the circumstances of society and the inconsistency of our lives. Only he has the power to give us such hope. The Bible gives us a powerful promise that one day a greater tomorrow will arrive and we will all live in it. The power of God points us to a hope that is found in what he will do in the greatest tomorrow we can imagine! So whatever tomorrow delivers, whether it’s good news or tragedy, we will make it through because God holds tomorrow and will walk with us into tomorrow. He created and prepared tomorrow. So often, though, it’s a challenge to believe this. We struggle to remain truly convinced that God is all powerful, has a plan for redemption, and is guiding us into a better tomorrow. When horrible things happen in our world, we’re far from certain that God can work them out for the good. Sometimes I have to stop and ask myself: If I believe God is sovereign and owns tomorrow, why doesn’t my life always reflect it? To be sure, I understand that there are some who have clinical depression and other diagnosed disorders. But overall I believe that my worry can be a barometer of my faith and trust in God. I always wonder how my life would be different if I truly lived as if God already has my path planned. I’m sure there’s a good chance you’ve wondered the same thing about yourself. In those moments when worry starts to rise and faith starts to fall, I must remind myself to go back and read about the power of God. Whether those are verses that describe God or stories in the Bible that build my trust in his power despite overwhelming odds, I’m comforted when I get done reading about his faithfulness. Along with reading about God’s power, I have to be consistent in my daily prayer time. If I’m not spending time talking with God and listening for him, how in the world will I trust him? Similarly, I set aside some time to think about and remember all the times in the past when God has been faithful to me. He’s seen me through some pretty dark hours. When I can decrease the worry and increase my faith, it allows me to remember that God is in control and already has a plan for tomorrow. But the problem with worry is that it doesn’t only decrease my faith; it compromises the influence I can have in the lives of others. Having high faith and low worry takes my eyes off myself so I can do what God wants me to do: graciously offer hope to people today. The Depth of Hope With a God who has our back, we’ve got little to worry about. Paul assured us of the uselessness of worry when he wrote Philippians 4:6–7: “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” God has tomorrow under control because he’s the wisest and most capable being in existence. He is fully loving, gracious, and merciful, and he is personally involved in the lives of his followers. His unequaled power has important ramifications not only for our lives but also for our interactions with society. We can boldly and graciously offer hope to people today because God has created and prepared tomorrow, and he will walk with us into it. Since God is supreme and has all power, we should refuse to grant fear the luxury of controlling our next steps. We desperately need hope. When we talk about the word hope, we usually equate it to wishful thinking. We’ll say things such as, “We hope they accept our bid on the house we want” or “I hope I get the job I interviewed for.” In our culture, hope has become synonymous with wishing or aspiring. But that wasn't always the case. The word hope has more depth in the Bible. The authors of the Bible understood the word hope to be the expectancy of a promised outcome or the waiting period before a promise was carried out. Writers such as Paul also believed that hope originated from God and was assured by his supremacy and the strength of his integrity. That’s why Paul said in Romans 5:5 that hope doesn’t shame us. The hope that society longs for is found in God, who walks with us in life. The hope he offers will counter our fear and worry about the future. Our expectant hope is that God has the path laid out before us, will journey with us, and already knows what tomorrow holds. Many people today are mired in worry and struggling to find sources of hope. We see disturbing trends in society that look irreversible, and we feel powerless to recover the values we’ve lost. But even here we can have hope, not because a future elected official or a boycott or a social crusade might reverse the situation, but because God is working out what is best in his time. He has promised the restoration of all things according to what is right, and he will do it. With boldness and grace as our allies, let’s confidently point people in the direction of what hope has to offer: God himself. He himself is the focal point that we look to when we’re fatigued, upset, saddened, or troubled about the coming days. Hope reminds us that our best days are ahead, not behind us. Surrender tomorrow to God—he’s already been there. Caleb Kaltenbach is a pastor in California and author of Messy Grace: How a Pastor with Gay Parents Learned to Love Others Without Sacrificing Conviction (WaterBrook). This article is adapted from his latest book, God of Tomorrow: How to Overcome the Fears of Today and Renew Your Hope for the Future
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