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Showing most liked content since 08/25/2017 in all areas

  1. 6 points
    Chronic By Superdecooper © 2010In the comfort of my dreams, I feel no pain.No heartache. No hurt coursing through this unpredictable frame of mine.I’m clear like a stream, questing for the blue ocean’s warmthBut Time, my subtle enemy, rushes me unwillingly towards the moment I awake.I struggle to smother all the small prickles of fear that the coming transition will bring.The warm comfort of my dreamscape fades.I wake into a world of tattered thoughts, unkind nerve endings and the edge of memory.Still, I hope it might be a good day.Maybe no rain in the forecast, bringing chronic pain.No mysterious body movements that spark instant regret.I fill my lungs with the sweet life of morning and hope.But then, like a death-row denizen, I exhale. Slowly I breathe out hate for the pinch of thorns shackling my release. Hot, dull, deep, unrelenting, and unforgiving pain greets me. In between each breath, I debate the sacrificial bargain awaiting my acceptance.Do I swallow each small capsule at every appointed hour?With just the right combination of rainbow tablets, I will be granted the power to bring this disaster under control.I summon the strength of will to exchange my cool intellect for a dulled, foggy existence haunted by the grey specter of pain.For just one more day, I agree to do less, think and be less.In exchange, the thorns will be blunted just enough for me to remember.When true night falls, I will dream again.
  2. 4 points
    My dad has Parkinson's. I spent several years with an extreme paranoia that I was getting Parkinson's at a very young age. . I was anxious. I had resting tremors. My right arm was not swinging properly. I had elbow pain. Rigid muscles Knee pain. Depression. Constipation. Insomnia All the classic Parkinson's symptoms that you can think of. I would google all day about Parkinson's and even went to doctors. I would discover a new symptom daily. Finally I had enough and told myself if I am going to get Parkinson's, let it be. (This is key to solving the problem by accepting the problem gracefully) There is nothing I can do about it other than exercise and eat healthy brain food. I convinced my self that I am not going to worry about Parkinson's until my smell is completely gone and stopped paying attention to my body. Note the word completely. Otherwise my brain will make me think that I have diminished smell and will drag me back into the anxiety cycle lol.. Slowly all the symptoms miraculously disappeared within few months and my stress levels went down. I realized it was all my mind play tricks to heighten my anxiety because it got to the point my brain started craving for anxiety like body craves for sugar. So it comes up with something to match the picture. Note, If you take dopamine meds herbal such as mucuna or other otc, it may interfere with natural dopamine production. So wean them off so your body make its own dopamine
  3. 4 points
    I realized yesterday I never mentioned Houston. OMG. I can not even imagine how that city will wring itself out and get back to functioning. It isn`t ``Houston, we have a problem``, but rather ``Houston here. we have a problem!`` That city is going to need lots of support and generosity. The view of a Nursing home with a roomfull of ladies in their wheelchairs with water rising to their waists is stuck in my mind. What a fight for survival by people of all ages, race, politics and economic standing is taking place. There were thousands of people rising to the occasion to help one another. Humanity and Love for fellow citizens is alive and well in Texas. Canada hopes that you soon get back on your feet Houston.
  4. 4 points
    I actually have something worthwhile to tell you all. My DH does not have PD but does have trouble sleeping. We bought a new mattress cause we thought that was the problem. The new mattress came with an eye mask. He started wearing it at night and so far (at least the last two nights) he didn't have any trouble going to sleep and staying asleep. I'm hopping up and down. It wasn't the mattress, it was the light. !!!!!! This reminds me of the scene in the movie Blues Brothers where they say, "The band. the band.!" And do all those flips up the the front of the church and back.
  5. 3 points
    This is a great PD site! Dr Laurie Mischley's video on nutrition is awesome! Her health care practice is the model of how health care should be.... https://scienceofparkinsons.com/2017/09/18/food/
  6. 3 points
    Just another update on DH. He had a fantastic Labor Day weekend. I brought him home for the day and he sat outside on the deck that my dear son built him the last time he visited us. This son passed away August 4th, and I am in deep grieving. But it was so peaceful sitting outside and I knew my son was looking down so pleased that his PaPa AL was enjoying the deck. On Labor day he had visitors that brought in Pizza and we had a great day telling jokes and laughing. This was at the Nursing home. Tuesday the Nursing home had their first Classic Car show out in the parking lot with about 30 cars. Two of the cars were once my DH. The neighbor now owns them, and with his help he brought them to the show. DH did not know this was going to happen, so he was in tears and so happy when the nurse wheeled him out and the first things he saw was his neighbor and the cars. I just cannot give enough praise and am so happy I chose such a great place for DH to spend the rest of his life. I can tell he is having new symptoms and the Home is right on them and I know they are from Parkinson's as does his doctors and nurses. He all in all is doing real good.
  7. 3 points
    Miracle, wise I'm not sure about that! Lol However I'm tired of others pushing their "opinions" and "no that won't work" or "what, your not on Sinemet yet, big mistake" I am the only person who will make my choices. If my choices are wrong it's on me. If they are right it's on me. This insidious disease is hard enough on us, having people nattering in our ears makes it down right impossible to keep in our lane of sanity. I play hard, laugh loud and love always. ...this keeps me afloat. Cheers MS? D
  8. 3 points
    Rainbow, One thing I have learned in the past 3 years is to do what works for you. The Forum is a great place for info and chatting with others in the same space. Though at the end of the day we are all different in our progression and mind set. My beliefs will be different from the next who is exactly where I may be in the disease symptoms but chooses a different path. I am a strong believer in exercise and a healthy mental state. If you lack in one the other won't survive. I sense that you are a caring daughter one that will do what it takes to keep Mom healthy. I admire that kind of love. All the best D
  9. 2 points
    I first noticed my tremors in November 2014. Didn't even say anything to my wife until January 2015, and didn't see my family doc until March. Waited until almost May to ask for the referral to a neurologist, and saw her at the end of June that year. She said it looked like PD and had I been 68 instead of 38 she'd have given the Dx right away. But she had me go through all the tests to exclude other diseases and I got the formal Dx in late September 2015. Sorry to say this but loss of smell is a hallmark of PD. I can barely smell bad milk, rotten meat, garbage, dirty diapers, and so on. Most folks on here will say similar things about their sense of smell.
  10. 2 points
    I certainly have no issue if you stay and continue to post. If some others feel differently, well, that is up to them. If I suddenly found out I didn't have PD after all (that would be quite welcome, so long as it wasn't something worse taking its place) I probably would drift away from here. But that's me, and I certainly wouldn't leave because one or two people out of a large group though I should. But, I'm also stubborn.
  11. 2 points
    Yesterday (9/16) was the Bellingham Traverse race. It's a relay (well, you can do the whole thing solo, and quite a few people did so, but most do it as a 2 or 5 person team) with a total of 6 legs. There's a road run, mountain bike, road bike, trail run, paddle, and finally a team run that make up the total event. My part was the paddle leg, plus of course the team run. The total course for the paddle leg was 3.6 miles, and the only restriction was it had to be human powered (so no sails or motors, but any style of paddle or pedal drive was OK). I used a borrowed sea kayak as it should have been quite a bit faster than my own kayak given that it's longer and narrower. My time for that leg was 43 minutes. I passed at least half a dozen other paddlers, and only got passed by 1 during that paddle. By the end I couldn't feel my feet, my knees took a while (a minute or two) to work correctly again, and my right hand (not the PD affected side, but very much my dominant side) was about seized up. Part of the problem was my water bottle slid to my feet when I was getting into the kayak and I wasn't able to get to it until 3/4 of the way to the end. So I was really thirsty by then. But also the cockpit of the kayak was so tight that I couldn't shift around at all since my feet were jammed up against each other and my knees were essentially pinned in place. But, overall it was a good race. I'm pleased with my time. I think with some focused training I could get under 40 minutes next year even with the same kayak and paddle. With a faster kayak (a surf ski especially) and a more race oriented paddle I could definitely cut more time, probably another 5 minutes or so, and probably have fewer problems with my feet and knees at the end. A different paddle might also help some with the hand issues. Fitting my Camelbak hydration bladder to my PFD or something would also help a lot. I'll almost certainly do this again next year, assuming work doesn't interfere.
  12. 2 points
    Super, At first, it is overwhelming to say the least. You need to go through the grieving process leading to acceptance. Once in the acceptance place, you will encounter new symptoms that will force you to go through the process again. We can only find peace in the acceptance mode. Living in denial, anger, depression or compromise is more difficult. I deal with PD by 1. keeping a positive attitude, 2. looking for the right medication cocktail, 3. exercising, 4. resting, 5. eliminating stress, 6. staying warm. Having PD is like a new life you have not chosen. Forget the old one, or at least detach from it otherwise nostalgia will lead to frustration. Try not to look too far in the future as this will lead to anxiety, causing stress which will exacerbate symptoms. Be grateful for the positive aspects present in your new life. It is a marathon, save energy, don't rush. Be systematic and analytical. You will become the PD expert for yourself. Don't compare too much to others as we are all affected differently and progression is different for all. The future has too many unknowns, stay in the present as much as possible.
  13. 2 points
    Hi Janice, Wow, thirteen years after dx, medications, etc. and your told you probably don't have PD! This happened to me at the 5 year mark. I was dx by an MDS and followed-up every 4 months with either the MDS or the NP. Sinemet was started after year one and gradually increased to about 1000mg per day. I really didn't feel my symptoms were under good control until I reached that dosage. I've been managing well on medication and the recent addition of Trazadone for sleep has given me back some energy. A year ago, I was scheduled to see a new MDS as the one who dx me moved to another health center. She questioned my dx and ordered a Datscan. I left that appt. feeling very confused and worried that maybe I had some other form of Parkinson's disease. I called her office the following day and requested to be examined while off medication as I felt the DatScan was totally unnecessary and a waste of money. She refused to examine me off medication and insisted on a Datscan. I decided to leave that facility and followed the MDS who originally dx me. I guess if there is any doubt in your mind a Datscan might help. There was no doubt for me as I have done my own medication experiments to assess my progression. Good luck and let us know how this turns out. Gardener
  14. 2 points
    Not all doctors are correct 100% of the time. Especially neurologist when there is no absolute test. Even with as much as is known about the human brain, more is learned every day. As we all know PD is a complicated diagnosis, and one that is for many patients misdiagnosis, happens. For those of us who have been members of the forum for awhile, have heard many times of people who have been told they don't have PD, then was seen by the right doctor and diagnosed right away. We have also heard the patients who were diagnosed with PD to find out they did not have PD. Thankfully PD is a slowly progressing disease and the correct diagnosis eventually is revealed. So, long story short, relax take a deep breath, find a trusted MDS. And live your life to the fullest.
  15. 2 points
    I had a rather frustrating meeting with my gastroenterologist today. I see that I will have to downgrade my expectations to preferences as far as doctors being willing to listen to my reality when it contradicts their opinions. On the way home, my caregiver and I stopped at Sally Beauty Supply so I can temporarily dye my hair purple. It will be a little restorative fun. If I don't like the results, I will wash my hair repeatedly while singing I'm Gonna Wash That Man Right Out of my Hair! Dianne
  16. 2 points
    I did wind up heading out for my deer scouting trip over Labor Day weekend, though it didn't turn out quite like I'd hoped. As many of you are probably aware there have been a lot of wild fires in the PNW this summer. While I wasn't directly impacted by the fires, the dry conditions did make a big difference to my trip - more on that in a bit. I headed out that Friday morning and got my backcountry permit after waiting in line for almost an hour. Then headed up to the first lake, and got my kayak loaded up and hit the water. Paddled 4+ miles up to the dam that formed the next lake, and hiked the 2.5 mile portage trail on up to that next lake. Then got back on the water an paddled the 10 miles up to where I wanted to start hiking up to look for deer. Once I got to where I wanted to be I had to get everything off the kayak and tie it up. Then hoist the near 50lb backpack on and start climbing. I knew the territory would be rough, and it was. Steep as heck with a ton of blow downs, fallen branches, etc. Made it up as far as I could before night was getting too close and then found a spot to set up camp. That spot was not especially level, but it was the best I'd found to that point. I wish I'd had a hammock as at least I could have slept better with a closer to level bed. Anyway, next morning I got up with the sun and packed up camp while my tea steeped. While enjoying that cup of tea I saw what at first I though was just a squirrel coming out of a tree. A minute or so later though I got a little more than a bare glance and realized it wasn't any squirrel. Wasn't totally sure what it was at first, but thought it might be a mink, or a weasel. After I got back home I looked it up, and it was definitely a long-tailed weasel. We watched each other for a few minutes before the weasel wandered off. Unfortunately I wasn't able to get to my camera for a photo. At this point it was time to start hiking again. Remember the dry conditions? Yeah, my first priority was finding a source of water. I had brought 2 gallons with me (16.5 of the almost 50lbs in my pack). But with as hot as it was, and the strenuousness of hiking in steep terrain with lots of obstacles to get past, I was consuming that water at an alarming rate and still not hardly peeing. I hiked for maybe an hour and a half that morning, and without any real sign of water decided I needed to turn back. At this point I had probably just over 3 liters of water remaining. If I'd know I could have made it to a water source up high I'd have stayed out there, but I knew that one more night in the woods and then next day I'd be in big trouble to even make it back to the lake. Once I made it to the lake I had maybe 2 liters of water left. So I filtered some water from the lake and got all set to paddle home. Which meant another 10 miles down that lake, 2.5 miles to portage to the first lake, and 4+ miles down that lake to get home. I did see quite a number of seemingly fresh deer tracks out there, and much lower than I expected to see them. I think that if I could get higher up I'd get into a lot better territory for hunting, but that will have to wait for a wetter season. All told I paddled 28 miles in my kayak, portaged 5 miles, and hiked an unknown distance, but likely around 3 very slow miles due to the difficulty of the terrain. In 2 days. This upcoming weekend is the Bellingham Traverse race. It's a relay with a couple running segments, a road bike and a mountain bike segment, and a paddle segment. My employer is paying for 3 teams to participate, and I'll be doing the paddle segment for one of those teams. So far I'm down 17lbs from the beginning of July, all from exercise. No particular diet changes, other than just trying to eat more healthy stuff and less junk.
  17. 2 points
    Quick Hello and Good Morning to all. Mrs. T got up early to join me at my MDS meeting, as she feels my summary reports are too poly Anna, as I never complain. Funny one was holding the DBS reader when my good doc did the adjustment. Tremor went to no tremor while holding it. Both my Doc and Mrs T caught that, I didn't even think twice about it. Also increased my Aricept to see if that helps with cognitive issues, never a dull moment. My wife asked if I had place the flag outside the house this morning. For the life of me couldn't figure the reason, until she reminded me it was September 11th. I was thinking it was still August. Leih is tearing around, thankfully with her toy rope. For a moment I thought she had my cpap hose! So far, so good. Settling in nicely. One day a time, and I'm enjoying my morning espresso.
  18. 2 points
    Good Monday Morning. Thanks for all the emotional support that you Ladies deal out to me. You are all very kind to me as I lay out my doubts for the world to see. As positive and forward thinkers, you watch out for those that need a kind word and you are quick with advice and encouragement. I realize the quandry that I present to people. I know that the general population where I live want me to say that I am feeling good when they enquire as to my status. Nobody really wants to hear the downside. I understand that. But if people believe my answer that I am doing fine, that makes my reply misleading and dishonest. So I think that I will stay positive in my thoughts and attitude, honest in my answers to those who ask how I am and reconcile myself to how I am and what I can do. I must say though that when I answer with "I am going to Toronto to have electrodes implanted into my brain, it gets their attention. LAD, it is good that you have three sons, a husband and parents to care for. You don't have time for downtime. Actually, all of you watch out for others and never do you complain for yourselves. That is what makes you all so sweet! Well, it looks like Irma is running out of gas. What a storm! What about Houston? They were front and centre on all our news channels, then wham, onto the next calamity which was Irma. Even the 16th anniversary of 9/11 where 3 thousand people lost their lives, gets tucked into the news a little deeper. Dianne, I hope that your Daughter will come visit you. Maybe it will be memories of Casey that could draw her closer to you. I hope that the opportunity presents itself in the next 10 days for some reconciliation. I hope that I am not being Nosey, ok, I am. I just think that you both would be happier if you could be closer in your thoughts. Well, I better get at the day. Where do the dust bunnys under the furniture come from? I hope that the Canadians stranded in the Caribbean islands stop crying for the Canadian government to send airplanes to bring them back. The risk was there when you went, suck it up, help the locals, the airplanes will start again soon. Have good days everyone.. jb
  19. 2 points
    https://twitter.com/KPRC2Sara So very hard to see and hear of the devastation in Houston, yet very heart warming to see the efforts of individuals, state police, reporters, the "Cajun Navy," etc., who are working as hard as they can to help save people. Seeing seniors at a nursing home sitting in their chairs in waist-high water, seeing home-owners seeing their homes destroyed and not being able to prevent it, cars (and people in them) nearly underwater, hearing of emergency centers without food/water/other necessities all surely call for us to prayer for those of us who cannot go and help in person. The twitter site I've posted above includes information on how to contact the Red Cross for those who are moved to give donations. I imagine their needs will go on for a long, long time. (How this devastation could have happened with apparently little planning ahead if beyond me.)
  20. 2 points
    My wife, recovering from rotator cuff surgery. Me with the little one. Not pile of "fluff" as evening routine is each dog stops next to my chair to be brushed in the evening. Thankfully eye drops and "pencil pushups" have let me resume reading once again. Lastest book (written from 1963) Full Tilt: Ireland to India with a Bicycle: Dervla Murphy
  21. 2 points
    LAD, since a decrease in my Duopa rate a month or more ago, my startle response has been worse. I discussed it last Monday with my Rehab Psychologist at the Parkinson's Center. She said PD creates its own anxiety even if I'm not thinking anxious thoughts. I'm seeing my MDS on Tuesday to have the rate increased on the Duopa pump. I'm hoping that will take care of the increased dystonia as well. Perhaps a slight increase in your meds during times of stress would help. For jb and any who have wondered how I'm doing, I have seen the Interventional Radiologist about problems with the tubing for my Duopa pump. Tuesday I will discuss options with my MDS, then next week I will see the gastroenterologist who placed the original tubing. I will also consult with a surgeon about the possibility of a surgically implanted J-tube which will avoid my tender stomach altogether. Even with all the difficulties I've had with ulcers and the tubing, I prefer Duopa to Sinemet. I went to church this morning, which felt wonderful! My caregivers have been in flux and things are finally smoothing out there. Life is good. I can see a light at the end of the tunnel and it is not an oncoming train. Dianne
  22. 2 points
    Hello, Rainbow -- Lots of questions are good! No need to apologize. I was taking Pramipexole and Amantadine before Rasagiline came on the market. But as soon as it did, my doctor wanted me to add it to my regimen of drugs, which I did. It is hard to say what each drug accomplishes for me, but I know that Pramipexole (Mirapex) is my chief symptom fighter. It eliminated my handwriting problem, any tremors I had, my awkward gait, and more. Whether Amantadine or Rasagiline or both may be responsible for delaying the disease's progress I do not know. However, I have now had PD more than 20 years, and I am still in the first stage of development. My doctors are not sure why, but we don't want to change anything in my treatment when I am lucky enough to be doing so well. Exercise is important. For many years of my PD, I exercised strenuously and often. I am now 71 years old and have slacked off a lot without noticing any difference. I read an article not long ago stating that exercise beyond 45 minutes does not do any more for the body. My results make me believe it. I used to work on weight machines and the elliptical more than I do now. I have been practicing tai chi for five years and find it very helpful with flexibility and balance. I also walk two to five miles per day five days a week over quite hilly trails and sidewalks. If your mother is young and can do more, bicycling is reputedly excellent for many PD patients, too. Or she could join a square dancing or line dancing class. Your mother is fortunate to have you as her support and her researcher! Good luck to both of you. J
  23. 2 points
    Lad, I used to love dancing like at weddings and such. I never was a good dancer but I had fun! This story is the highlight of my dancing career. We were on a cruise ship, in one of the lounges one evening. We were travelling with my sister and her husband and 20 other friends on the Carribbean. I forget the song the band was playing but it was perfect for dancing in what we always called a ``Bongo Line``. You know, you form a train of people with hands on the waist of the one ahead of you and you follow with a shimmy and a shake and the leader takes you around the room. My sister urged me to get it going and I had enough liquid courage in my system that I didn`t need much persuading. I soon had our group all attached and circulating the smallish dance floor and quickly all the other people dancing joined in. As the Wallflowers left their chairs and joined in, I was running out of room to maneuver. So I lead that connected train of fun loving fellow cruisers out a side door of the lounge, around a short hallway and back in the open door on the other side. As I lead the front of that dancing snake back into the room through the second door, the tail of the train was still going out the first door. The line all got back into the room, and the song finally ended. We had done the `Locomotion`` in style and it is a pârt of a good memory for me. Have a great day everybody jb
  24. 2 points
    I play the banjo, not as well as I used to, but well enough. And sing, I do too. Mostly old time mountain music, but also a lot of more modern stuff through the 1960's. The thing about playing the banjo is that most people can even tell when I mess up something, so that's nice. It is also easier to play a banjo than a guitar, as it is tuned to an open G. I used to play the guitar, but I sold mine and have played the banjo for a good number of years now. As I progress through my DLB and Parkinson stuff, I hope I can continue playing up to close to the end. I like it. It soothes the soul. I love to play in minor keys, don't know why. I used to play in bars and local jams, but I had to stop due to missing too much stuff, and those guys do notice, and I couldn't remember words to songs anymore, and I don't like to use paper things to read from. Same for iPad's and such. I just plug along now, but folks still seem to enjoy listening. And if they don't, I don't care because I enjoy playing and singing by myself as much as anything. For those who play, keep on playing. For those who don't, take up an easy instrument that you like, then start playing with other people as quickly as you can, as that is the best way to learn and advance. All you really need to know to start is three chords on whatever instrument you are playing, or the individual notes for the same three chords. Just take off. Happy picking.
  25. 2 points
    Miracle, I'm so sorry that happened to you. You have handled an awful lot for your mom. It's obvious how very much you love her.
  26. 2 points
    Oh yeah, we're also cultivating raspberries. Hoping to get enough next year or the year after to make raspberry wine too.
  27. 2 points
    You are like Grandmaster Oogway From Kung Fu Panda. So wise!
  28. 2 points
    I spent last week at the beach with my husband, sons, their girlfriends and my parents. It was an impromptu vacation and went great. My boys have become fine young men - they were helpful and engaged. My middle son even took my dad out on a fishing trip without being asked to do it. As much as I hate my PD, I think it has helped my boys develop empathy for others and realize that time is precious and you should cherish times spent together. At least I'm choosing to believe that? Hug your kids and grandkids! LAD
  29. 1 point
    Being scared is real and hard. My husband has had PD for 12 years, my sister has PD, and my best friend from childhood has PD. From where I sit, don't waste time with going to just any doctor because you often don't get to the right diagnosis very fast. Research and look for the very best Movement Disorder Specialist you can find, preferably at a NPF Center of Excellence or an Academic Research Center. They will get him to the diagnosis (or resolve your fears) faster than others. My advice is to run, don't walk, to the best MDS you pick. Travel, if needed. If the diagnosis is PD, look for intense exercise programs specific to PD like Parkinson's Wellness Recover. http://www.pwr4life.org/ Good luck. Not knowing is hard and makes us scared.
  30. 1 point
    Great poem. I'm a writer as well, mostly fantasy and space opera fiction, but I have enough poems I'm planning on putting out a book of them, which will include a few PD ones as well. I usually write at least one each year in Parkinson's Awareness Month. Let's see if I can dig up the link for this year's poem: http://rickspdjourney.blogspot.com/2017/04/dream-births.html
  31. 1 point
    I have Myoclonic Jerks that come and go and I can tell you with absolute certainty that they have nothing to do with stress. In fact, they normally happen when I'm completely at rest.
  32. 1 point
    I've been through a couple of sleep studies, basically it was commented "Parkinsons" related sleep disorder. CPAP to keep the oxygen levels up (I have central apnea and obstructive apnea events). Tried Clonezapam -- felt like I was in a fog for 24 hours afterwards. Hopefully everyone is away of long term issues with using that stuff, as it is meant as a short term (one to two week) For me no issue falling asleep, but often I'd wake up after four to five hours and couldn't get back to sleep. Silenor (doxepin) is helping. 3mg or 6mg does, and with my 240# size the 6mg seemed to be most effective. I've been on it for four weeks, pretty good nights sleep for about the last few weeks. It took about two weeks to become effective.
  33. 1 point
    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.
  34. 1 point
    As a hunter myself mainly bowhunting, I find it ridiculous to have to choose between your health and your 2nd amendment rights.
  35. 1 point
  36. 1 point
    I'll admit, all good reasons above for not seeking a diagnosis early.........good reasons (on paper, that is.) The human brain also needs to know "why" sometimes. "Why" am I getting these symptoms, what is wrong with me. Too many unanswered questions can lead to extreme stress. Stress that is as unhealthy as having the disease itself. I do not agree with Waren, not all people are "surprised" when they get a PD diagnosis, some are, but not all, many have had unexplained symptoms that cannot be "seen" by Dr., have done their own research and have found their answer, well before Dr. (finally) sees 2 cardinal symptoms. It is very easy to minimize or discount someone else's anxiety, anxiety is also an illness and one that needs to be treated seriously. If getting answers will ease that anxiety, then answers are "medicine" for ones anxiety. It is not "black and white" boys, think outside the box a little. People cannot be talked out of anxiety, it is real, very real and very dangerous, affecting ones whole life. If it that easily cured (by talk) there wouldn't be countless medications for it. Wonderful for you that you have never experienced this type of anxiety, believe me, it is a serious illness, have respect for those that have it.
  37. 1 point
    If three neurologists have told you that you don't have PD, then you likely don't have it. I'm not sure that shopping for a doctor that will give you the diagnosis you want is smart. If you keep shopping, you will surely find one that will diagnose you with PD. Then, you will both have the wrong diagnosis and, even worse, not have the correct one. If your symptoms are not significant enough to diagnose PD, then after the doctors have excluded other serious illnesses, you would be smart to live your life to its fullest and forget about PD. If you still suspect that you have PD and won't let it go, then now is the time to start the best treatment for PD - EXERCISE! If you're not willing to exercise, then what's the point in pursuing a diagnosis?
  38. 1 point
    Dianne- my prayers are also with you and your family. I tell my boys all the time that if I did not have my faith foundation, I would not have made it through this far. Lad
  39. 1 point
    Yes with prescriptions on the bottle. I kept mine in a clear plastic Baggie in my carry on
  40. 1 point
    Good afternoon to all. jb, I agree with Linda. You do not spend much time on the pity pot. Your positivity has brought joy to me and to most of us innumerable times. I'm grateful that I can share my experiences here where we at least speak the same language. Outside of Parkyland, most do not understand. I purchased an excellent comic book recently by an Alaskan newspaper cartoonist who received the same revolting diagnosis as the rest of us. Like you, he has a way of making me laugh and cry at the same time. He even discusses his experience with DBS. https://smile.amazon.com/gp/product/0271071028/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1 It is well worth a read. Now when I get a new caregiver or want to share my experience with friends or family, I hand them the book. It saves me a ton of energy. By the middle of next week, I will know more about when will have the correct tubing inserted for my Duopa. I've been through the wringer with tubes in recent months. Even for all that, I prefer Duopa to oral carb/levo. Next on my emotional agenda is my daughter coming from Texas to Seattle. Her dad is dying; the doctors want to discuss hospice with her. I will probably not see her during her ten-day visit because she does not like mixing the two sides of her family and would rather have teeth extracted without anesthetic than talk about feelings. I am always ready to support her when she asks. I still have both my parents. Her pain must be unbearable as she and I also lost her brother in February. She insists there is no afterlife and refuses to believe in God. I pray for her every day. Without faith, I would be up a well-known creek without a paddle. Blessings to all! Dianne
  41. 1 point
    Good morning everyone. Trying to hurry and I lost my post. Redos are always shorter. Nice to see you Tom. What a lovely dog quartet you have. Your wife snapped a great Picture. We have a little rescue dog. We don`t know much about it but wherever it came from, they must of chased it with brooms and such. If you go near him with a vacuum cleaner, or dust mop; anything like that , he will run and hide. Hope Houston is drying out, and Florida people..hang onto your hats! Be safe everyone. jb
  42. 1 point
    Usually just a doctor and preferably a neurologist.
  43. 1 point
    Lad, TSA is pretty good. Most recent flight I was slow and awkward but I just told them I had PD and they were very nice. In the X-ray thing I couldn't lift my arms high enough but after I explained, he backed off. I can't hide my symptoms anymore so I just tell folks and they are always kind and tolerant. Have a wonderful trip. Twitch
  44. 1 point
    Our uniqueness, our individuality, and our life experience molds us into fascinating beings. I hope we can embrace that. I pray we may all challenge ourselves to delve into the deepest resources of our hearts to cultivate an atmosphere of understanding, acceptance, tolerance, and compassion. We are all in this life together. -Linda Thompson stay hopeful & be hopeful LAD
  45. 1 point
    Hiker , coming to the party a bit late but welcome , But only for the fact that I don't do much computer time in the nicer weather ! When I was first DX I kind of went into a bit of a shell so to speak. For a short period I was leary of doing things for fear I might intensify the disease . But with a small bit of research realized that is exactly opposite of what I should have done . Once I realized that I went back to being active ,almost to active to the point I was getting tendonitis from over use . The key is not to panic stay active and reduce stress as much as possible .I find my tremor gets out of control when I get stressed . One of my goals is to hike the Appalacian Trail , I would love to do it next spring but have teenagers that are very active, in ice hockey ,baseball and other kid things . Plus leaving the family for 5 or 6 months not an option right now . It's all up to you as time frames go ( personal goals ). I like others don't want to put things off for fear of progression ,but at the same time can't cram it all in in a day either . My belief is that if you control the PD and stay positive ,exercise , eat right and not let the fear of having PD consume you that you might have a bit of a say in how fast the PD progresses . (My belief ) . It will progress but from all of my personal research I believe it can be kept at bay for a long period ! And it appears you have no problem finding ways to stay active . Another one of my goals is to do one more half marathon ( done 8 ) . Good Luck, Dan
  46. 1 point
    Not so much an adventure, but this week the kids and DW and I got out in the yard and picked a LOT of blackberries. Then we made jam. Going to be really nice to enjoy that all winter long. We had a really good crop of blackberries this year. They're a seriously invasive weed that I constantly have to battle back. I want to get goats to help control them. But the berries this year were really tasty and sweet and plentiful and we made pretty good use of them. Next year, if I can get prepared ahead of time and if the berries are as good as this year, I want to make a blackberry wine.
  47. 1 point
    Thanks for all the positive messages in this thread. I've been away from the forum for awhile, not on purpose, just been busy. I've been on a down slope lately and reading this thread of late is helping me make a turn I hope! I just need to break through this stretch of mental negativity.
  48. 1 point
    The following is an article written by Albert Mohler on the current goings-on in our country. A very worthy read by this highly respected theologian in which your thoughts above are supported, DB (see especially the 3rd- and 4th-from-the-last paragraphs). http://www.albertmohler.com/2017/08/13/letter-berlin-lessons-history-heresy-racial-superiority/
  49. 1 point
    Not really tip top shape, but I try to do as much as I can anyway. And getting in better shape is part of the point of that. Cooking halibut is pretty dependant on personal tastes, but basically any recipe you could use any other white fish you can use halibut for the same dish. If I get a decent amount of fillets I'll probably smoke some this year. Other than that, I like some simpler baked or grilled dishes with a little butter or oil, a decent dusting with salt and pepper, some herbs (I like tarragon with fish though I do use others as the mood strikes), maybe a lemon slice and cook until just getting flaky. Don't over cook it! Another dish my wife and MIL like with halibut is to dust the fillet with a salted/spiced/herbed flour, dunk in scrambled (raw) eggs then coat in bread or cracker crumbs and press into some shredded paramsean cheese. Then pan fry until cooked through and serve with a nice salad of your liking. The best part of the halibut, bar none, is the cheeks (ling cod too, though it needs to be at least an 8lb ling before the cheeks are big enough to bother cutting out). For that I get really simple. Melt some butter (or use bacon fat), sprinkle the cheeks with salt, sautee some garlic in the butter (if I want to be fancy add some fresh herbs to the butter too and sautee until fragrant), then cook the cheeks until barely cooked through, turning after a couple minutes. The flavor is a really good halibut fillet flavor, but with a texture more like scallops. Ling cod and rockfish often get cooked the same as the halibut above. I'll also use them for fried fish (though cabezon is my preferred species of frying as it holds up best to frying, and isn't as good as just a baked/grilled fillet) and will serve the pieces as either fish-n-chips or for tacos. Salmon usually gets smoked. If not there are a few baked fillets I've done, but none were remarkable enough to note. I did make rilletts once with some salmon I got from a hatchery. Because they were spawned out fish they weren't worth grilling or baking. So I smoked half the fillets, and poached the other half. Then shredded them and mixed them with sour creme, lemon juice and zest, salt, butter, green onion, and parsley. Then packed the mix tightly into jars and topped with melted butter. Keeps for several days (maybe up to a week) in the fridge and freezes very well. Trout, if I keep them, which I only will if they are wild or are a holdover from a previous year's stocking, typically get baked or grilled whole as they're too small most of the time to be worth filleting. Best is if you have a campfire to wrap the fish in aluminum foil with butter, onion slices, a lemon slice and any herbs/spices you want and toss that on some coals. Predominant crabs out here are Dungeness Crabs. They taste very similar to Atlantic blue crabs, but are about 4 times the size. We also get red rock crabs sometimes. They definitely aren't as good, but still very much worth keeping. In the Puget Sound the limits on crab for sport fishing is 5 per person per day, minimum 6.25" carapace, male (never seen a female that was a legal keeper at that size anyway) and hardshell only. Red rock are 5" minimum, either sex, limit of 6 per day. You're allowed 2 traps per person and up to 4 traps per boat. 2 traps is all I can manage on the kayak anyway. Only bear meat I've had was made into sausage. Bear meat is something (when served as a steak or roast at least) that most people either love or hate. I think a lot of it has to do with how the meat is cared for from the moment the shot is fired until it gets frozen. Just like with deer and elk you can ruin otherwise fantastic meat if you don't keep it clean and get it cold quickly. The other big factor is the bear's diet. Because they're omnivores the time of year and the food available makes a huge difference as it can vary considerably during the year. In the spring they're often feeding on forbes, grass, and whatever else they can find. By fall depending on where they live they might be eating berries all day long, or spawned out salmon. If there are people nearby they might be eating garbage. A spring bear that's been eating flowers, forbes and grass will probably taste sort of close to grass fed beef. A berry stuffed bear will have a sweeter taste and probably have a very dark meat. A bear eating spawned out salmon will probably taste like a tidal mud flat, and a garbage eating bear will probably taste like, well, garbage. If someone gets bad bear meat, whether due to poor care or poor diet, they usually fall into the "hate it" camp and never try it again. One thing about bear meat (and also cougar/mountain lion meat - which I've been told is like the best pork you ever had) is they should always be assumed to contain trichinella parasites. So, cook it accordingly. Minimum temperature to kill the parasites is 137F, but that must be held for about an hour. 160F will kill them basically instantly. In between is, well, in between for time at temperature. Had squirrel stew once which was quite good. Rabbit can be really tasty too. Haven't duck hunted yet, but would love to if I could find the time. I live in the best county in all of WA for duck hunting. But too many other hobbies right now.
  50. 1 point
    Yes the sensation of slipping or suddenly stepping on ice was my initial PD problem, still is when meds are wearing off or dose needs increasing. For me this slipping business started occasionally maybe 15 years before dx and is always worse in low lighting or shopping malls with shiny tiles or even roads glossy wet with rain. It doesn't seem to be a vision problem. It became so bad before starting meds that I just could not take a step without inner panic. Often it will turn into a freeze or I start the shuffling and then it improves. It's made me snap my neck back on a few occasions - self inflicted whiplash! Oddly enough, I don't seem to get it or the shuffles when out bush metal detecting, maybe because I'm going at a very slow pace anyway and watching my step more over sometimes rugged terrain. I have to use a walker as a guide when going out or always make sure I grab a shopping trolley to steady me inside supermarkets etc. Using a cane helps too, like you can sense the floor better, so helps compute to the weary brain that there is no massive chasm in the flooring or ice patch. I'm having physio for this atm practicing counting 1,2,1,2 with every step and not looking at my feet which is really hard because I just don't trust them not to make me come to a dead stop. My arm swing has basically vanished both sides, so using light weights, I have to get into a rhythm with a good swing to support the balance and gait. Like many others here, I'm prone to crash into doorways or stagger sideways sometimes or lean forward into a really quick walk that I can barely control. People have thought I'm drunk which is so embarrassing. Terrified of falling as I have severe osteoporosis too. I get footdrop a lot or numb legs below the knees. With the freezing gait, I get a heavy lead-like paralysis sensation up both legs into the butt - it aches, muscles become quite rigid. It's a lot better on my Sifrol (Mirapex) but not entirely under control yet. Hope this helps others dealing with the same issues.
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