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Showing content with the highest reputation since 02/22/2019 in all areas

  1. 3 points
    Hubby has sprung back rather well, far better than what I thought he would. We went for coffee yesterday for a bit and visited with friends. In the afternoon he had a follow up blood test for gout and he did fine with the second outing of the day. Then he suggested we go to dinner, managed that well too. Today is fine as well. So much for my preconceived ideas about recovery. I’ll take these kind of surprises every day!
  2. 3 points
    Back up plan? Yesterday I was looking forward to going to RSB class. It was cancelled. The Instructor Lives it a nearby town Fremont, Nebr. that has been flooded. A week ago On Wed. she could not get home because water surrounded her town of 20,000. (yes 20,000) There are three rivers that flow around the town and all went over their banks. The little airport there was open so a pilot with a small plane was getting those with children back to their homes on high ground flying them in. I really feel bad for her almost a week and still surrounded by water. Wow, To say the least it is a mess! Anyway it has been a long winter. Yesterday was beautiful day out and I thought get out the trecking poles and go for a walk. No one was home and it was 3:00 o'clock. Sometimes you heart is bigger than reality. Off I went last fall I had a 1 hour walk that most can do in 1/2 hour. It is hilly and I liked it for that reason. Makes me have to push myself. Things started out great moving faster than a turtle. Eager and reaching the 1/2 way point. Then things suddenly changed my legs got heavy and stiff, and my arms and hands were cramping. And to boot my brain seemed foggier than usual. Crap it sets in I a off! Tried to get my cell phone out of my pocket (forget that) Just get home. You know if you stop you might freeze. Your pace is somewhere between dead and slow. AND IF YOU FALL! You are just going to be down. At 5:30 my gets home from work. She sees me trying to get up the steps to the front door of our house. And yes I peed myself earlier. I guess what I am trying to say is advise. Make sure there is someone that knows your route and if you aren't home by a certain time to go look for ya. Being hard headed can also be not wise. Make sure you have a back person or wait till you do. Tom
  3. 2 points
    https://www.kpbs.org/news/2018/nov/02/parkinsons-patients-preparing-brain-cell-replaceme/
  4. 2 points
    Dear Tom, That's quite a harrowing story! I'm so glad you made it home safely. It takes great courage to admit an error in thinking. Thanks for sharing the story with us, and the lesson learned as well. Dianne
  5. 2 points
    i had my first visit with the surgeon and I all so had a visit from the dupoa nurse. After hearing what the pump offers I am very excited to get it. I asked the surgeon about the kinking and he said he doesnt see alot of it. I also asked the duopa nurse and he said that yes kit can be a problem and he thinks that it is because people are twisting the tube when unhooking it and putting it back on . Also he said that people pull on it I am so excited about the possiblity of being on again
  6. 2 points
    That sounds like a good plan. Now that it is no longer in trial status, I believe your doctor has a right to use whatever tube he/she deems best. That same avenue was suggested for me at one point, but they never pursued it because 1) it was still in trial and had to follow protocol, and 2) it eventually worked out with the tubes they were using. I remember one time seeing the tube after it came out...it had a perfectly tied knot in it. I thought I had been given some special GI tube-tying ability. I was ready to go on the road and make some money!!! In hindsight, glad I kept my day job!!! Keep me informed, Mihai
  7. 2 points
    Good Morning Linda At 3am it was 0 outside with a wind added to that. You must be having a sleepless night. All here get those sometimes. The good old days. Those old times were family times. We didn't think much about material things. Our games were card games and board games. They really were fun because they were games we played with others. We talked, smiled, and usually somewhere in the conversation we talked about a upcoming family or friends event we would be attending. We saw so much of each others nobody ever really noticed we all were changing because of age. Younger people would laugh our first tv was a used black and white one when I was a kid.. A new TV cost allot! If you had a tv that was a excuse to have someone come over to watch the Honey Mooners, Wild Kingdom, Whats my line or a sporting event. Then the darn TV would have a tube go out right in the middle of the program. It worked sometimes to bang on the backend of it or move the rabbit ears to a different location. All said about the good old days. Parts of them I wish we could get back. If fact since trying to type this post I have thought very little how come I knew it was 0 at 3am or the reason for being awake. After reading the posts it has left me with a very pleasant feeling. The forum would not be here for us to express the good old days. Just a click away. Guess got to admit not all the new stuff is for the bad. Have a nice day. Tom
  8. 2 points
    Hello Friends! I've been trying to thaw out. We recently had enough rain and above freezing temperatures to get rid of the ice. It's nice to be able to do chores without the fear of falling on my rump. My husband put yaktracks on my boots which helped a lot. Does any one know how frustrating it is to need an extension cord that can be seen perfectly under 3" of ice but can't get to it? Very frustrating to say the least. It was connected to the deicer for the chicken water but I wanted to also plug the heat lamp in but darned if I could get it out from under the ice. Oh well, I just confiscated the one my husband uses to plug in his truck. Needless to say, when he got home he got mine out from under the ice! LOL I thought maybe I was done having horses but I'm getting horse fever. I still haven't decided but I sure like looking at the ones for sale and dreaming. You know, dreaming of riding off into the sunset on my trusty steed, not the dream (reality) of catching then convincing them to actually leave the barn without having to negotiate with a 1000# animal. I liked reading all the posts and seeing what everyone has been doing. Dianne, I got an extra copy of My Degeneration to pass on to others to give them an understanding of Parkinson's. And TexasTom, I've never been one for jogging but after watching your video on slow jogging I gave it a try and I can do that! I see we have a Tom in Omaha also. Omaha Tom and jb, I'm fighting the nasty weather also. It's raining today but will be back down to only 9 degrees tomorrow night with more snow in the forecast. Take care everyone and keep the apathy and depression at bay.
  9. 2 points
    Hi all, New effective treatment options. Last Friday Feb. 15.2019, I had aan appointment with a MDS, who I had been seeing for over a year. I was first diagnosed with parkinsons in October 2017. At the doc appt, she changed my sleep aid from prosac to mirtazapin and doubled my morning meds. Since then I have slept the best I have in about 15 years and have enormous energy during the day. I have written a letter to the doctor telling her that the insight in to the treatment changes were the result of prayer once a wek for 67 weeks for sluggishness, and 27 weeks once a week for insominia. Additional prayer support came for prayer requests to 25 christian organizations for the last 10 months. I want to give God all the priase and thanksgiving for the improvements. I am doing things physically I haven't done in 10 years. I plan to report these improvements to the 25 organizations that have prayed for me. I am determined to fight this. Fred
  10. 2 points
    The Christian life is not a constant high. I have my moments of deep discouragement. I have to go to God in prayer with tears in my eyes, and say, ‘O God, forgive me,' or ‘Help me.' --Billy Graham--
  11. 1 point
    Linda, Im sure we all know your position on your christian beliefs. Im not being critical regarding that. I want to make a point that your beliefs arent the only ones represented on this forum. If each of us chose to express our own beliefs with the same intent you have, this forum would not exist in its current state. You continue to evangelize your personal beliefs on this forum where in my mind it is an intrusion of my rights to have a sound and meaningful discussion on PD. You have your own thread here already.
  12. 1 point
    Sorry to reply so late...I don't come on here too much. I meant, don't expect much from Dr Okun...he seems to have his own agenda. Yes, I'm still doing well. I'm progressing a bit, but overall have very little to complain about. Still having fun and living life.
  13. 1 point
    March 19, 2019 Prescribing healthy food in Medicare/Medicaid is cost effective, could improve health by Tufts University A new study led by researchers from Tufts and Harvard suggests that offsetting the cost of healthy foods by 30 percent for Medicare and/or Medicaid participants could prevent about 3.28 million cases of heart disease and stroke, and would be cost effective after only five years. A team of researchers modeled the health and economic effects of healthy food prescriptions in Medicare and Medicaid. The study, published today in PLOS Medicine, finds that health insurance coverage to offset the cost of healthy food for Medicare and/or Medicaid participants would be highly cost effective after five years and improve health outcomes. "We found that encouraging people to eat healthy foods in Medicare and Medicaid—healthy food prescriptions—could be as or more cost effective as other common interventions, such as preventative drug treatments for hypertension or high cholesterol," said co-first author Yujin Lee, Ph.D., postdoctoral fellow at the Friedman School of Nutrition Science and Policy at Tufts. "Healthy food prescriptions are increasingly being considered in private health insurance programs, and the new 2018 Farm Bill includes a $25 million Produce Prescription Program to further evaluate this approach," she continued. The study estimated the economic and health benefits that would accrue if 30 percent of the cost of healthy food purchases in supermarkets and grocery stores were covered through Medicare and Medicaid, through an electronic debit card. Two scenarios were modeled: 30 percent coverage of fruit and vegetable purchases; and 30 percent coverage of purchases of fruits, vegetables, whole grains, nuts/seeds, seafood, and plant-based oils. The model estimated that both of these programs would improve health and lower healthcare utilization. Over a lifetime of current beneficiaries, the fruit and vegetable incentive would prevent 1.93 million cardiovascular disease (CVD) cases; while the broader healthy food incentive would prevent 3.28 million CVD cases and 120,000 diabetes cases. (Only the latter incentive was predicted to reduce diabetes cases because of the role that whole grains and nuts/seeds have in diabetes prevention.) Both the fruit and vegetable incentive and the broader healthy food incentive were estimated to reduce healthcare utilization, with savings of $39.7 billion and $100.2 billion, respectively. Total food subsidy and other policy costs were $122.6 billion for the fruit and vegetable incentive and $210.4 billion for the broader healthy food incentive. Considering net costs vs. savings and health benefits, both programs were highly cost-effective, with incremental costs of $18,184 per quality-adjusted life-year (QALY) gained for the fruit and vegetable incentive, and $13,194 per QALY gained for the healthy food incentive. (The conventional cutpoint for a medical intervention to be considered cost-effective is less than $150,000 per QALY gained; while costs less than $50,000 per QALY gained are considered highly cost-effective and medical 'best buys.') "Our findings support implementation and evaluation of healthy food prescriptions within healthcare systems to improve the diet and health of Americans," said co-senior author Renata Micha, R.D., Ph.D, research associate professor at the Friedman School. "Medicare and Medicaid are the two largest healthcare programs in the U.S., together covering one in three Americans and accounting for 1 in every 4 dollars in the entire federal budget," said co-first author Dariush Mozaffarian, M.D., Dr.P.H, dean of the Friedman School. "These new findings support the concept of Food is Medicine: That innovative programs to encourage and reimburse healthy eating can and should be integrated into the healthcare system," he continued. A validated micro-simulation model (CVD Predict) generated samples representative of the Medicare, Medicaid, and dual-eligible populations. The model utilized national data from the three most recent National Health and Nutrition Examination Surveys (NHANES 2009-2014), as well as data from published sources and meta-analyses, which included demographics, dietary intakes, policy effects, diet-disease effects, policy costs, and healthcare costs. The two intervention scenarios were applied to each of the three samples and assessed the impact at 5, 10, and 20 year horizons and at a simulated lifetime horizon. This study is a part of the Food Policy Review and Intervention Cost-Effectiveness (Food-PRICE) research initiative, a collaboration of researchers working to identify cost-effective nutrition strategies to improve health in the United States. The researchers caution that the study cannot prove the health and cost effects of the incentives modeled. The study is intended to provide the best available national estimates of potential impacts that can be considered at the federal level when designing and evaluating incentive programs. Explore further To make SNAP healthier and save costs: Offer food incentives and disincentives More information: Lee Y, Mozaffarian D, Sy S, Huang Y, Liu J, Wilde PE, et al. (2019) Cost-effectiveness of financial incentives for improving diet and health through Medicare and Medicaid: A microsimulation study. PLoS Med 16(3): e1002761. doi.org/10.1371/journal.pmed.1002761 Provided by Tufts University
  14. 1 point
    Linda There are still people with good values. I just went to the bank and delivered my wife some money on her lunch break. At my wife"s work a fellow worker came in and told about a retired couple that live in Glenwood ,Iowa. They have lost everything from the flooding. They have nothing left to even change into . The husband needs a lift chair it was also gone. They lived on SS as their only source of income. They have no flood ins. The employees at her work are of many different faiths and some that don't attend church. It is like the movie (Pass it on) Everyone is pitching in. The retired couple are complete strangers. They are not related to the person taking up the collection to help out. That same person that started the collection is letting them stay in their home. And now is helping them to see if they can get into low income housing. 😊 I didn't sleep much last night. But the above kindness has been the best pill today for my parkinson's symptoms. In fact the last sentence of this post is the first time I even realized I have parkinson's! Since my wife text me to go to the bank. Tom
  15. 1 point
    There are many things to cut. Politics is one thing that gets people to disagree. My little 20 dollar donation doses little to influence the outcome of where money is spent and where it is cut. That is the sad reality in almost all decisions. If 1,000,000 people donate 10 dollars each for a certain politicians election cost. They get that much air time to put their views out. If another person gets 20,000,000 from a certain Corp. for their air time. Who gets heard most. Then what we hear as their views. When they are elected. Seems odd how they end up many times voting on their original views. It is known as pay back time. Both parties do it. Been doing it for a long time since I started voting. That is why there has to be cuts. This is why we are where we are now. Parkinson's and other diseases don't get to vote. The people with diseases (Not all) through the years payed their taxes based on what your employer payed you. The corp. donate large amounts of money (not all) mostly not to have laws made to keep the population healthy and strong. But to keep the money flowing in their direction. In our case we do not know what exactly caused our disease or others with their certain kind diseases. (Air ,water, chemicals, or just part of aging) I gladly payed my taxes and figured it would be used for the betterment of the whole. I worked two jobs most of my life. So when the cuts are made and the money flows for the out of control budget. Past performance gives me a good idea who is going to see the biggest cuts. Even if They don,t cut areas designed the help the betterment of the whole. Our medicine, and our health ins.( if parkinson's disease is even covered by it) will probably go up. For I only have 20 dollars to donate for air time. When you don't sleep much. ( and I am not alone) Certain subjects when brought up conflict with the way I was raised. That, being people mean way more than money. Sorry for flipping out. It is getting harder to sleep as time goes on. But my values stay the same. People over money. Tom
  16. 1 point
  17. 1 point
    Would you rather have a wife who takes every thing for granted and when the time comes for you to need help but she won't be around or is in constant state of denial? Having PD puts you in a category of getting hit harder when you get sick or have an accident. That is why she fusses over you.
  18. 1 point
    Luck mostly. I am blessed by a slow progression. In those 11 years, I worked at a very challenging job, both physically and mentally. I was a Senior Aircraft Accident Investigator at the FAA. (You can imagine!). Now that I have retired, I exercise 6 times a week. Weight lifting, yoga and boxing (my favorite). I exercise as vigorously as I can and it definitely helps. I have had no choice but to give up alcohol. I just can’t handle the effects anymore. Finally, I pay close attention to my meds. They can (and do) get out of whack quickly. It is a constant struggle and sometimes I win and sometimes I lose. I just keep trying. Bob
  19. 1 point
    I plan on getting a card and money hope others might show their appreciation. It isn't much! But without the coaches there would be no program. It is the right thing people should do in the first place. To help out where it is needed. It is the way I was brought up. This time I happen to know the person. The next time my wife and I may not. We come from the old way. Where Me first gets put on the back burner allot. Tom
  20. 1 point
    Hi mark i havent had to bother you lately I m still struggling with being off alot nothing i do helps. my doctor thinks that i am not absorbing my medicine because i am on very high doses and in am still off alot I have been using apokyn which has been a life saver. I have decided to get the pump. I am hoping that it will provide some relief because my quality of life sucks. my daughter just had my first grandchild so I need to get better hope all is well with you
  21. 1 point
    I've had Botox in my feet with no untoward after effects. It takes a week for it to work, so if you hike the next day, your feet will still be tied in knots. Dianne
  22. 1 point
    RNwithPD, I've been getting Botox for couple years with no side effects. The doctor will offer you ice afterward if you want it. I have not had any swelling and can resume any activity after the injections. I get three total. One in my calf, side and bottom of my foot. Little discomfort in bottom of my foot but it doesn't last.
  23. 1 point
    Human nature has a history of struggle and in part that is what makes us human. We struggle and push forward with or without a certain religious belief. We do what we are born to do, survive. A belief in some supernatural power has no bearing on our capabilities or abilities to deal with the issue at hand. I have no one to blame for my condition.
  24. 1 point
    Hello Music Man Saw you live in Florida. You do have something positive winter weather. For many of us this winter has been hard on getting out to feel the warmth of the sun. At my age 64 my hope for the cure comes for the younger PWP. My body warranty even without Parkinson's has went over the 60,000 mile mark. I am glad that people on the forum can see. That there are dedicated Physicians and Scientists looking into ever avenue to unlock the door. I hope your progression is slow. Maybe one of these trials will find something you can benefit from. Parkinson's sucks thats for sure. Researching for a cure is like the sun. It warms us all when it is shining.
  25. 1 point
    Came across this today.... “For everything this disease has taken, something with greater value has been given–sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count; always looking up.” Michael J. Fox
  26. 1 point
    Since I started taking all thus medicine for PD I hardly have any hair on my legs so i rarely have to shave any more
  27. 1 point
    Estimados usuarios, Investigadores reportaron los resultados de una dosis única del tratamiento genético para la enfermedad de párkinson en el estudio AXO-lenti-PD. 30 participantes con la enfermedad recibieron una dosis de un virus no dañino que tiene tres genes importantes para el metabolismo de la dopamina y que es el neurotransmisor más importante para los síntomas de la enfermedad. Los genes fueron inyectados en el cerebro usando cirugía. El estudio demostró reducción de los síntomas en pacientes con un perfil de seguridad adecuado. El estudio es pequeño y con limitaciones, pero los resultados son alentadores y sugiere que la administración de tres genes con el use de virus es posible y con mayor potencial que el uso de un solo gen. La compañía esta planeados estudios adicionales para confirmar los resultados. Si están interesados vean la descripción de los resultados en el press reléase de axovant laboratorios. Saludos
  28. 1 point
    Hello Skiing I am somewhat like you and understand the frustration. Been up since 2 am. 3:30 am now. Pain, stiff, cramps can't get relief. Might as well just stay up and take my mind somewhere else. The medicine does nothing for my balance. Fell three times at Rock Steady Boxing yesterday. I use to even box when younger. Now walk with a cane. Without the cane shuffle and fall the tired my legs get. But the meds do improve my speed . My tremor came after other symptoms. The meds help with that but stress overrides often. This Parkinson's is different in what area it decides to hit the worst. (Imo) I am drawing my conclusion by observation of function of others at rock steady boxing. I kinda a think old injuries be it body or mind could have effects. If you have a weak area it takes more nerve communication to function. Compromised to begin with before Parkinson's. My dose of sinemet is a total of 900 mg a day. If I take more my function does not improve. But it is clear with less I get stiffer, slower, and now tremor worse. I have talked to the doctor and balance kinda excludes me from DBS. Head concussion 3 known times and what looks to be lesions from mini strokes. Eye exam show lose of some peripheral vision in one eye. We all play the cards dealt to us. At the same time some of are problems are not PD related. No solution for some. One day at a time. Tom today 64 feel 84. Tomorrow 64 feel like 70.
  29. 1 point
    Well, noah, all I can say to that is: we have the disease, so we may as well make the best of it because it ain't gonna' get any better... If thinking more consciously about how I walk, how I talk, and so forth will make things a little easier, I'll do it... Anything that makes me function more normally and live more successfully! What's the alternative? Bitterness, anger, resentment? Everyone has something to bear. Frankly, I'll take PD any day over alot of other things that are alot worse than PD... Keep your chin up and keep moving forward! Mihai
  30. 1 point
    Hi Noah... The pump did help somewhat with freezing. I always had to make sure I was well "on" though... Neither the pump (nor DBS for that matter) are really suppose to address gait and balance issues (and freezing)...although there is ongoing debate about that in the PD world. I have some freezing with the DBS, but I try to manage it well through the settings that I can control. I read a great (part) of a book re: walking and PD. The title is "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity"...author is Norman Doidge, MD. Pages 33-100 are a chapter entitled: "A Man Walks Off His Parkensonian Symptoms." The chapter is about an African man who really focuses mentally and physically on how he walks...he is very conscious of the movements he makes and concentrates very specifically on thinking about walking when he walks (it's much more complex than that, but that is the theory in a nutshell). I've tried his idea and it does work. Maybe not all of the time because there are so many variables to be considered. However, I find that if I focus (like a child learning to walk might have to focus) when I take steps, I have much better results that when I go about it without thinking. It's well worth the read. I think there is something valid to it! Mihai
  31. 1 point
    JB - Happy Birthday Omaha -- great voice and great memories. I pushed myself to my limits. Five VIPs arriving at 18 hours flying and transfer from China. Five wet noses and happy tails (tales) and wet sloppy kisses for our volunteer crew. I have a big van, so volunteered. Oh flight delays, customs delays, loaded safely at 2 AM in Houston. Three-hour drive home (we piled into a hotel to get some sleep and drive back in daylight hours). What was I thinking? They were a bit jet lagged. Buc-ee's is a Texas Icon (gas station, lots of bathrooms, and place to grab lunch). Michelle and Lynn, sitting against the beaver) being our two volunteers who flew over to China to meet the dogs and accompany five back to their new life in Texas. My wife is in the blue holding Phoenix (she loves junk food and eating out, I'm eating healthy!) http://www.grr-tx.com/2019-China-Goldens I've increased my exercise. Boxing three times a week. Jogging three times a week. Now I am adding cycling and swimming. Plan to compete in a sprint (short distance) triathlon. Santa Cruz in August. 750M swim; 5K run; 20K bike ride (so 1/2 mile swim; 3-mile run; 12-mile bike). My 7-year-old sister did this in 96 minutes last year (she is fast and avid open water ocean swimmer). I plan to finish!
  32. 1 point
    Ranjana, Since I was already on the pump (and not on any oral meds) at the time I had DBS, they had to figure out whether the stimulation would be enough, or if I needed any level of C/L with it. As it turned out, with the stimulation levels that worked for me, any little addition of C/L made me highly dyskinetic. So they decided to move forward with just the DBS (which I preferred anyhow). I stopped using the pump the day they turned the stimulation on and have not used it since. I kept the tube just in case I needed to use the pump for any reason. I actually have an appointment on 3/29 to have the peg-J tube removed. That will be a happy day! It is possible to use the pump and DBS at the same time (kind of uncharted territory), but for me it was not necessary. Hope that helps! Mihai
  33. 1 point
    I only wore the pump 16 hours a day. I turned if off at night and went without the med all night. In the morning, I would hook it up, and then wait about 45 minutes for the med to kick in and then I was good to go. The 16 hour thing was clinical trial protocol, so it just stayed the same when the trial ended and it was on the market. My extra dose was 1.5 every 2 hours. If you go off before you can get another extra dose, then the continuous dose should be slightly increased or the extra dose raised or taken more often. It's always a difficult balance to strike...oral meds, pump, DBS settings...it's always a challenge to get the sweet spot where everything is as it should be!!! Hang in, Mihai
  34. 1 point
    Hello... I was on Stalevo for many years (it is a dual pill that contains C/L and Comtan). I had a lot of issues with on/off periods and the peaks and valleys that so often accompany the oral medications. I found the pump to be superior to any of the oral meds I was ever on. That may be my own unique experience, but I mention that for what it's worth... Nothing compares, however, to being completely Levodopa free now that I have had DBS. I never knew how awful I was really doing on Levodopa (maybe because of the sheer number of years I have been on C/L)...I am just so glad to have it completely out of my system for now. I know I will likely need it on some level in the future as the disease progresses; however, I'm loving things right now! Peace and blessings, Mihai
  35. 1 point
    Qft. While it may scratch an itch to try and blame the failure of trials like this to demonstrate a cure on some amorphous greedy entity and their sadistic wish to keep us sick, it does nothing productive. I try to live by the following maxim. Never ascribe to malice that which can be adequately explained by stupidity/incompetence.
  36. 1 point
    I felt the same way for some time after my diagnosis (at age 46, three kids). Meeting with a therapist helped immensely (and they don't need to specialize in PD- since a lot of what you feel is a mixture of grief reaction, anxiety, and depression). The crying thing is familiar as well- I think it is probably related to the disease as it still pops up unexpectedly (Disney movies cause unpredictable crying jags for some reason. My wife told me something that helped when I was at my lowest- essentially 'we can't fix what you have, we know it will get worse, and it may end up killing you, but we're not going to continue to live in a state of despair'. That snapped me out a bit. Again- find a therapist soon. And not as a joke, but you should lock up your guns if you have them, and have your wife hide the keys.
  37. 1 point
    Exciting (and by that I mean horrifying) discovery #1,000 since my diagnosis is that my emotions, typically the negative ones, are on steroids. I don't think it is the disease, but rather the diagnosis that is causing it. Something will happen that i normally would just be irritated by, and I find myself headed down a path where I can't pull out of it. No violence. Just dark depression. I know rationally that i am overreacting to whatever the stimulus is, but it makes little difference. Reminds of the comedian Ron White who (after being thrown out of a bar explained) "the cops told me I had the right to remain silent, but it turns out I didn't have the ability to..." I am a (usually) smart, rational guy. I know my reactions are going to cause those around me who love and care for me to pull away. I know this. But I can't seem to reign in the emotions. And it scares me. Again not because I would ever take physical action against anyone or thing, but I cannot seem to modulate the emotion. With time, it passes, but the damage has largely been done. I am looking for counseling with someone with experience in PD, but also spouses for those with PD. But I know it's not just the disease. Bottom line: I am a roller coaster of emotion. Just a tinderbox ready to curl up in a ball and/or cry my way through an evening (and I never, ever cry). Good grief this thing.....
  38. 1 point
    Following is an encouraging article from Parkinson's News Today. https://parkinsonsnewstoday.com/2019/03/04/emapunil-parkinsons-mouse-study/
  39. 1 point
    Ok, here is the only picture I like of me. Reminds me of a bird. My DH took this picture. He was standing I was sitting but he is taller than me anyway. My meds aren’t working like they should so neuro might increase dose at. Next visit. I am predicting. I hate how this progrzam changes what I type. 8m not changing it to show what funny stuff it substitutes. Oh well. Marcia Bird. P.s. Some mistakes are mine I’m sure.
  40. 1 point
    BEING STILL REVEALS MANY TREASURES It is quiet behind our house this time of year. Not many people are using the pathway that stretches from one town to another. It is cold outside and it pierces my flesh, leaving me shivering as I stand and wait. In the silence, I can hear my teeth chatter. So, what compels me to stand out in the cold and wet of winter? Nothing. And everything. I walk the icy pathway. Barren trees lift their branches high into the blue sky above. This is a cotton-candy-blue-sky morning. I almost could forget I have Parkinson’s disease. The birch tree, with its white bark, stands tall beside me. It almost glows as the sun radiates its light on trunk and limbs. And I see utmost beauty. I stand speechless. It is a beautiful, frosty, winter-morning sight. Taking a small respite from writing during the holidays, I have learned many lessons this past month from the silence of the keyboard. The rattling of its keys has been minimal. Social conversations via internet sites have not occurred. The telephone has been in the hands of another, and one-on-one phone conversations via satellites and modern technology have been almost nil. Through the silence, through the barrenness of winter — this dark season of life — God has spoken. A mere whisper perhaps, but He has been there. One who lately seemed so terribly far away still walks beside me in my struggles with this illness and life itself. In reality, Parkinson’s is much of my life. But in silence He is teaching me that the faster I walk, the less I see, the less I hear. The faster I live, the more I am lifeless. I miss the surprises. I miss the beauty. I miss the Creator. I stand on the path. A man on a bike stops to ask what I am taking pictures of. I tell him salmon in the creek. A woman stops, repeating the same question. I tell her downy woodpeckers. They both look — one up into blue and one down into murky waters. They smile politely and continue on their way. They can’t see. They are hurried in their experiencing of life and in their hurry, they miss it. I listen to the sounds of birds that are wintering over and have found sustenance at my bird feeders. Filled with black sunflowers, thistle seeds, and suet, they sing with thanksgiving before they dive down for another bite. This — all of this — is a wonderful gift God has given. Regrettably, I too have often walked dark winter’s path without looking up into barren branches. To my regret, I have missed the surprises that are hidden for those who have learned to be still. For those who have learned who God is. For those who are still and not consumed by worry over things they cannot control. I stand in the cold, warmed by knowing He is gently leading me back — back to a fullness in Him. A fullness that once discovered, once experienced no other can fill, no illness can take. I stand there, taking in a deep breath of icy air surrounding my face. As my lungs fill with a cleansing cold, I see it and it sees me. There, in the high limbs, a hawk is perched, watching, observing, following me where I move. I lift the camera and point in his direction and shoot. He is annoyed and removes his talons from tightly held limbs and takes off into flight. As I stand in stillness, I watch with held breath. I want to remember this moment forever. I want to remember this lesson He teaches me. How His wings protect and shelter us underneath. I want to remember in stillness there is greater sight. I want to remember to live. Unhurried. Full of life. Full of thankfulness. Full of gratitude. I want to be a grace extender. I want to live in stillness, knowing deep in my being just who God is in my life: Hope-maker. Fear-taker. Peace-giver. Illness-comforter. Grace-coverer. Stillness-trainer. Life-sustainer. Soul-redeemer. Silence-creator. Day after day after day.
  41. 1 point
    Coacht you brought up a very good point my cousin was on agonists. His wife said he did very odd things. I did noticed he was hyper and vocal more than his norm and continues to be so. But I wish I could of talked to her what meds they changed to if any. It is very hard to bring up the subject of PD with them. He is in a very long term state of denial. He tries to hide it and will become angry when any mention of PD is heard. I am always learning Thanks for input on agonists.
  42. 1 point
    Good morning Parkie friends. LAD, my meds say not to drink alcohol when taking meds! She-Ra, we don’t have a MDS in our town either. We’d have to drive two hours for one. So I make do with local guy. im looking for a decent picture to replace green me. Can’t find one yet. Keep warm.! M
  43. 1 point
    (All) I think the hardest symptom of Parkinson's is the one we don't have. On the forum I hate to vent frustration.(we are suppose to be positive) You know when the symptom that we don't have has come. IMO Sorry to speak my mind. The only people that can understand this symptom are those that have Parkinson's and the person living with them. You remember when you were invited to attend get togethers with others. The activity was going out to see and experience things that took walking, going up and down steps, shuffling cards, moving from place to place that had an agenda. As this disease progresses one day it hits you. Fewer and fewer invites. Your spouse or partner senses it but they hold it inside. You fight it.(exercise all you can, pick things on a menu easy to eat or just have a salad, take a booster dose of meds, your thinking is slow so you say less and listen more. The symptom we don't have there is no medicine for. Damn it. Going to talk to someone will help. You sit down with your spouse and encourage them to go and do without you. They need a life. You forge ahead and do activities in the scope of your capabilities and include your spouse if they want. This is the other part of the forum that is here for the PWP and the Caretaker. Because we wear each others shoes. We know what you think and feel! We may not have the answer. But we listen. My best advise is when you lose something in life. Focus what you are good at. My daughter would miss college if I wasn't like a tic on a dogs behind. You still maybe do things around the house. You still surprise your spouse with a birthday get together with the family. You go to one function events in your scope. You tell yourself I refuse to quit. Going to the pool now. Before leaving putting on a fresh pot of coffee for my wife. It saves her a little time to get ready for work. when she gets home I will have a meal ready. PWP Tom
  44. 1 point
    You’re so hard on yourself. But remember, everybody has a chapter they don’t read out loud. Take a moment. Sit back. Marvel at your life. At the mistakes that gave you wisdom. At the hardships that gave you strength. Despite everything you still move forward, one courageous step at a time. Be proud of this. Continue to endure. Continue to forge ahead. And remember, no matter how dark it gets, the sun will rise again. ~ Anonymous
  45. 1 point
    Thank you so much for your thorough and thoughtful suggestions! I've taken a course of xifaxan in the past to treat the SIBO - about 18 months ago. It Seemed to have little effect on the bloating. I've also tried the FODMAP diet for six weeks about a year ago. Not sure that helped my Sinemet absorption much either, although I haven't been following it recently. I'm also wondering if the PPI I take is further impairing the C/L absorption and increasing the SIBO. I was given the PPI a little over a year go to address a GERD problem that was causing vocal chord inflammation and difficulty speaking and swallowing. Those issues are now resolved - I'd like to get off the PPI but don't want he vocal chord issues to come back. I really appreciate all your help and the time you take to provide us with expert, individualized information that isn't available anywhere else. Thanks again!
  46. 1 point
    This is such a helpful, hopeful, practical and caring thread on our common problem of brain fog/fuzziness. I'm so sorry each of you are dealing with it, too. I wish I could give a group hug to you. It has become almost incapacitating for me, as it sounds for some of you. Recently I find that even small things that I need to do that are time sensitive are a tremendous challenge. I have surgery scheduled at the end of this month for a brain tumor--a meningioma--which I read is the one to get if you're going to get a brain tumor. A meningioma grows from the "cushioning" between the scalp and the brain and are usually benign. And apparently they are in general easier to remove than some other kinds. But my tumor is large and dense and has come complications. I'm hopeful that removing it surgically (with probable radiation afterwards for the largest part which has grown over my brain and cannot be removed surgically) will help lessen the cognition, fatigue and constant sleepiness that are present all the time now. Having been a "Type A" personality and having become anything but that now is very hard to deal with. So I'm stepping into the club here with you all. I would like to ask for prayer, if I may, for the upcoming surgery--especially should the result not be optimal, in which case radiation would be indicated, and that is what concerns me the most because of potential side effects. Thank you so, so very much. And I'll be upholding you each in prayer as well.
  47. 1 point
  48. 1 point
    Peace we are having thunder snow outside. Also our local news showed a snowplow stuck. Called off church tomorrow. Wind speed at 50 mph outside. Peace keep on with your love for horses. Exercise is not the only thing that slows PD. I still have dogs. They are a pain sometimes. But Opie, Bell, and BB in the morning get me out of bed, make me move, they depend on me. Best of all they make me happy. Your horses make you happy. Tom
  49. 1 point
    Tom, Thanks for the info! I also found out the each state has a "SHIP" program that provides free counseling to help people understand Medicare and answer personalized questions. I'm going to give them a call. Kevin
  50. 1 point
    Good morning everyone. Hello Ems, how is Ireland these days. And Linda, hope you are managing the winter ok on the East coast. Omaha Tom of Nebraska, in turn, thank you for all the weather you send us, We give you 8 " of nice clean white pure snow, fresh from our pristine Artic deepfreeze and suitable for many exercise programs as you mention how much you like shovelling it. Not to mention how our winter snow layered nicely onto Nebraska cornfields is money in your pockets. On the other hand, much of the snow and snow pellets, freezing rain, fog , plain rain and all other forms of really crappy winter weather that we have to contend with comes from that big soup bowl that you Americans refer to as the gulf of Mexico. Out of that warm puddle comes warm air, bayou catfish and alligators plus lots of moisture that flows North and crosses the border at detroit/windsor, hits our colder air and starts to condense upon our southern ontario road system. Thanks for the explanation of grandparent terms. Have a good day O.T. Be strong everyone, JJ Bushka
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