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  1. Today
  2. 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
  3. 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.
  4. Handwriting changes

    Thanks Oto, This has been a really difficult time since last week. I'm almost wishing my wife didn't nag me into getting the stupid tremor checked out. I only went because I started dropping things and my signature started looking crazily on some days. Now I'm beginning to realize why men stop going to doctors' visits. Maybe not knowing is better. I don't really believe that it's just frustration. Don't worry, I'mhanging in there. -s
  5. Finally sleeping about 8 hours - just amazing

    Hi, pdman. I'm sorry to hear you have that odd restless leg all-over issue, too. It's awful, isn't it. I try to not take more than 4 doses a day, and I try to space them so that my last dose is between 11:00pm and midnight. Sometimes that will take me through a good night's sleep. Those times when it doesn't, I may take another dose at around 4:00 or 5:00 am and then can go to sleep again for a few hours. Depending on when I get up, I may consider that 4:00 or 5:00 dose as the first dose of that new day, and take my regular first dose at a later time in the morning, thus planning my whole day's dosages on that new start time. I don't know if that is clear or not. I'm not sure it's even clear to me. Some days my dosing schedule works perfectly for me, but other times I can forget to take the dose after turning off the timer and resetting it for the next dose. This has been happening a lot lately, as my mind is trying to go in too many directions, and I can't successfully multi-task like I used to. So, in answer to your question, I'm flying by the seat of my pants, so to speak! Each day is an adventure in Medicine Land. There are some days I take five doses, and there are some days I wake up and find that there are one or two doses that I didn't take and didn't realize it. So some days I may have had only three or so doses. I just do the best I can at this point, which obviously is pretty scatter-brained... I think I may not be as affected as some are when extra time happens between doses. I can feel the effects, but not enough that it causes huge problems...
  6. Yesterday
  7. Finally sleeping about 8 hours - just amazing

    Linda, I know the feeling exactly. Do you wind up taking extra doses? How does that impact your normal dosing? Thanks
  8. Weight Loss

    I have actually lost 10 lb in the last few months. My weight loss is from the dyskensia I have in the early evening. I havent been able to fine tune my meds so I am off starting At 8 pm. I wiggle around so much that my shirt is soaked with sweat. I bet I burn 1000 cal a day just doing that. I am trying to work with my md. The challenge is that I cant tolerate any long lasting (CR, Rytary) after 3 because it keeps me Awake,(I have trouble sleeping as it is!) And adding reg sinemet it just adds to my dyskensia. The same thing happened before I had DBS surgery in 2015 after the surgery the dysensia went away and I was able to gain wgt So I am between a rock and a hard place
  9. Not Diagnosed, However Need Advise

    Post as many questions as you can.Remember you are not alone.Even if you have not been diagnosed,you share some common symptoms with people on this forum,so your questions are welcome.
  10. Not Diagnosed, However Need Advise

    Thank you everyone for your kind words and Waruna for sharing your story. All your words help! Just got the call my appointment with an MDS is not until December! Yikes that is a long way away... I DO have a a lot of Anxiety and just getting that date threw me off today and am extra shaky. I have been working out almost every day, running between 1.5 - 2.5 miles then about 30min of fast paced weights. I seem to have at least 1-2 "really low" energy days a week whereas working out or functioning normally in general is pretty much out of the question. I am working to push myself on those days and trying may different supplements for anxiety. Ashwaghnda did help me some with sleep... I feel it pushed my first "wake up" to about 3am now instead of 1am... So more experimentation needed. I don't really know what more to say. My top complaints are tremors, sleep loss, low drive and energy.. Then anxiety and depression... The depression goes away when I "feel ok" so not super worried about that... Maybe if I could sleep better and reduce the anxiety I would have more energy and perhaps have reduced tremors... I don't know what I have however it's all frustrating and waiting stinks. I will continue my path toward reducing my anxiety, exercising and eating healthy until December and if I improve by then I can cancel or whatever is most appropriate. I guess I will have to pray for 2018 for a clearer path. If I get really worried about a symptom I may post a question or two however I don't want to be labeled the member without PD asking how to fix PD problems... I am just working thru all this the best I can. Thank you for everything!
  11. Handwriting changes

    Superdecooper,this is the anxiety that comes with PD like symptoms.It changes lifestyle.Just try to do as much as you can do now,as per functioning,until you get a diagnosis.You may not have PD afterall.and if you do,you just have to readjust,and plan for the future.It will not be the end of life.
  12. Good morning!!

    LAD, have a really nice time on your vacation, and stay safe!
  13. Good morning!!

    Hi, Tex. Glad to hear Mrs. Tex is keeping close watch on you. Has she been able to do some volunteering like you suggested? It's obvious how much she loves and cares for you, so it may be hard for her to get out and do other things. Understandable too that she would love for you two to go on a vacation and worry about the debt later, although I can surely understand your concern about debt. Seems that those of us who have medical issues either get the help we need OR have a bank account with some money in it to do some fun things, but often not both. Maybe there could be some sort of compromise, like a vacation someplace nice but not too far away, and where you can take your dogs. Sometimes just a change in some way can be so restful, enjoyable, and memorable. Am so sorry about your coastal friends' aviation-themed hotel having to be gutted due to Irma. What sorts of things are you thinking of creating with your wood-working skills? How did your husky/retriever mix do as to the t-shirt she/he ate?!?!?! LOL! Animals do the strangest things. One morning I went into the kitchen and happened to see my kitty sitting by the sewing cabinet with a strange look on his face. He had swallowed a lot of a string and was sitting there with the spool of thread with the string still attached. Had to scoop him and the spool up and go to the ER where they performed surgery. He still looks for string to swallow. Why...?!
  14. For me exercise can trigger tremor in the Lt arm,then decreases and eventually stops with increased exercise intensity.Balance problems is more pronounced after exercise,mainly aerobics,but balance improves with increased exercise intensity and frequency.With weight lifting exercises,Lt arm shakes,after increased repetition due to fatigue.Sometimes,after bicycle exercise,I get tremor in my Lt arm for couple of minutesthen it stops.So some symtoms may get worse after exercise temporarily,then get better for some people.In general, exercise has been proven to be good for slowing PD progression.Too much caffeine may increase anxiety,tremor in some PWP.
  15. Good morning!!

    Hi, jb. I'm sorry I'm just getting back to your same question earlier about how it is on the East Coast... Thanks for asking. Our skies these days have a hurricane look to them. It's different than any other weather-related look. Often, in a storm for instance, there will be clouds, but there will be bright blue sky above or below the clouds eventually. Or the whole sky will be dark. But the hurricane sky is a strange mixture of clouds that are different. It's hard to explain. We have not yet had much as to any effects from the hurricanes, but that can change from moment to moment I'm finding as I watch the forecasts. It's been such a terrible happening for the Caribbean islands. And just continues... Such awful devastation. Glad you were not hurt in that accident, jb. I know how awful the driver must have felt to have caused it. I did the same thing one time on my way to work one day. I was very distracted and didn't see in time that the cars in front of me had stopped. I woke up the people in those five cars, but we were all so stunned that we couldn't process what happened for literally a few minutes. And needless to say, I felt terrible. What an adventure you get to go on to get to the hospital! I would get totally confused if I had to do that alone. And just think: You get to do this again! And again..... LOL! It's so good that they are so thorough in checking people out prior to the surgery. Glad you are in good hands. Are you holding up okay in these months you have to await surgery? Are you able to still do all that your homestead requires of you? You can be looking forward to knowing the hay has been harvested and stored so that you can relax in front of your wood stove post surgery without that chore facing you. It also sounds like you and your grandson and his friend did a good job of helping with the other things that needed to be done (after you rounded them up from the pool!). LOL! I still laugh about how they ate their dinner as they routed through the refrigerator looking for what to fix for dinner! Kids are so much fun to have around, aren't they. Take care, and please keep on keeping on with letting us know all that is happening up there on the farm. Linda P.S. I love the maple cookies from Canada that we can get at our grocery stores down here. Just delicious! I also get a very large jar of dark organic maple syrup at Mom's Orgainic Market down this way that reminds me of Canada. I use it in so may things. I've read it's a great antioxidant, so that gives me a good excuse to use so much of it.
  16. Handwriting changes

    Hi everyone, The worst part of waiting to get diagnosed is worrying about the what ifs. In the meantime, I just wanted to say how much I hate the fact that my handwriting is changing, for whatever reason. When I write in cursive I can't read it and when I try to write with long-hand, it's smaller and takes a lot of force to get the words on paper. Concentrating on writing slowly and clearly seems to be making a small difference, but it's taking some concentration on my part. I'm not sure what's going on yet, but I'd sure like to have my old handwriting back. Super annoying. I'm a journalist and I take notes for a living when doing interviews... So this is becoming a troublesome. If it turns out I don't have PD, then I'm still going to have to figure out why this is such a problem. -s
  17. Finally sleeping about 8 hours - just amazing

    Hi, DB. I think you might find the dose of sinemet to help you sleep longer. I try to stretch out my doses so that my last dose is around 11:00 or 12:00 pm, and if I wake up 5 or so hours later, I take another dose, and it almost always works to help me get back to sleep. I'm finding that more and more if I wake up long after my last dose of the day, I start to get that strange thing of feeling like I have to tense all my muscles, and it's awful. Do you know the sensation I mean? It's like having restless legs, but all over. I love your avatar!
  18. Not Diagnosed, However Need Advise

    Ella, I hope you definitely stay with us. We feel you are part of us, so don't feel uncomfortable to keep posting. I'm so very glad to hear that you are 90% free of the anxiety you had been experiencing. From having experienced the awful, awful affects of (social) anxiety, I am very happy for anyone who has worked through to the other side of whatever kind of anxiety they deal with. I am a totally different person inside and out from having faced it, gotten help, and then working hard to get through it. It was not easy. But so, so worth it. I suffered from it from a very young age. I think it was caused by both not having had much self confidence at all in my younger years, complicated by my body not having what antidepressants eventually were able to provide medically.
  19. Thanks, waruna01. I can certainly relate to your frustration of not getting a diagnosis or symptoms improving. Is constipation an early symptom of Parkinson's? I've woke up in the middle of the night a few times over the last month with bad constipation in addition to the other symptoms I've been having over the last month and a half, which haven't gotten better. I played softball on Sunday and I even felt the symptoms during rest periods. Running around the bases I felt as if I had an out of body experience where I had a sensation where I was leaning left and felt like I was going to fall (I sprinted around the bases). After the game I had more noticeable tremors/trembling in both arms (left more pronounced) that lasted for several hours as I watched the football games. Same thing happens when I consume too much soda with caffeine I.e. Coca Cola or Pepsi. Do Parkinson's symptoms get worse after at rest after exercise?
  20. what do you do for fatigue

    Great post! So much wisdom and practicality i what you say. I've found it all to be true in my own life. No way to get around having to cut back on so much in order to get the rest our body lets us know it needs. This past weekend I got into something I've been needing to get done, and I got energized but pushed way beyond when my body had told me to stop. I've paid for it the past three days. Interesting that the push got the things done i wanted but caused me to to lose 3 days I could have done so much more. :--)
  21. what do you do for fatigue

    I've learned to accept fatigue. Its a normal part of PD, and gets worse as it progresses. From my experience, the best way to deal with fatigue is rest. Exercise and work when you can, rest when you can't. I quit working, and it was the best thing I ever did in terms of managing PD fatigue. No supplement or medication for fatigue has ever been a good long term solution for me, and I've tried them all. I find 2 hour naps, when tired, to be very refreshing. I take daily naps after lunch. In fact, I'm going to doze off in about 20 minutes.
  22. Good morning!!

    no one was hurt at all. He must of been almost stopped. I usually check my mirror before I stop. Oh, I did, no one there. I remember that now. There was a bit of a hill that he would of been behind. I sat there for the full cycle of red light. During that time he would of come into view in my mirror and eventually roll into my back bumper. But what difference would it of made any ways. ..? LAD, kids are very savvy and resourceful. Just think about having fun! Avoiding the hurricanes Linda? Good days to all. jb
  23. Not Diagnosed, However Need Advise

    Ella-do the happy dance and do what works for you! I do have anxiety- it's my primary trigger for tremors! And it is very real with PD. And often overlooked. I exercise when I'm having a bad day! It helps me to manage it. So....PD or not ... Keep moving!! LAD
  24. Last week
  25. Newest DBS system st Jude's

    You have to be within a couple of feet to establish a connection. I had my SCS upgraded this past summer to a Bluetooth model. The generators only work with apple products and to be more specific, an IPod. Kinda bugs me, because I would prefer to control it with my phone rather than still having to carry a second device. I'm sure the DBS folks have the same issue. Keep us posted on your progress YLopez56. Dave
  26. New guy here - a journey I'd like to avoid

    Hi guys, Just checking in here after two hours of testing this morning. I had a nerve conduction test - ouch but thankfully brief - on both arms, done by a technician, and an EMG test of my muscles in both arms, done by the neurologist. Also had the Transcranial Doppler/ultrasound test on the vessels in my brain, eye and throat, done by a tech. The good news,he said, is that i passed the first two tests. However, I didn't get results from the third. The neuro said I dont have carpal tunnel syndrome and something else that had a long complicated name, possibly ALS. He did say that the nerves on the left side of my neck were not working correctly - i dont remember the word he used - might have been damaged. Also, that I have pretty significant weakness in my right muscle, as evidence by my inability to push his finger in different directions even though I was using all the strength I could muster.. He said my cervical fusion was not totally successful and that I was still suffering/impacted/from the fusion which wasn't totally healed. I had the cervical fusion in 2004, so this was news to me. He said the nerves around the fusion were about 80 percent recovered, and that the nerve had rejoined the muscle, just not all the way. The Transcranial Doppler ultrasound test was uneventful for the most part, except for when she examined the back right underside of my head. My right hand, the one with the tremor, started bouncing all over the table like I was playing drums. That was too odd. She said it's possible she was examining a vessel in my brain that caused the reaction. That was too odd. I didn't talk to the neuro after that, but the tech didnt find anything that warranted bringing the doctor in for an immediate discussion. Oh one other thing: was my foot supposed to be cramping when i was getting the nerve test. Super odd. Next week, I get another nerve conduction test of my legs and the EEG test, which he said was like a sleep apnea test, but only with about 20 leads to test brainwave or electrical activity. I did discuss my ongoing sleep apnea with the neuro and also the vivid dreaming and apathy..He just listened and asked a few follow up questions. Maybe after next week's visit he will be able to give me an idea of what's going on. I hope so. ..
  27. what do you do for fatigue

    Niacin made a huge difference for my fatigue. I take 1gram 3x daily of regular niacin (full flush) . If you use it look up info on niacin flushes which you will go through while your body adjusts. Flush free niacin is not safe to take at high dose
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