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Showing content with the highest reputation since 09/12/2018 in all areas

  1. 3 points
    My reflections from a truly inspiring weekend spent with scientists and researchers, only together will we ever be able to rid the world of PD.... https://tmrwedition.com/2018/09/16/notes-from-the-synuclein-conference/
  2. 2 points
    When I commented that I could add to that Tom, I meant add to that tome, which means story I think. I can't say that I have ever used the word tome before. A new 4 letter word for me. The power of Mother nature is on display this weekend. The super typhoon Manghut that is hitting SE Asia, which is an even bigger storm than Florence which is bathing the Carolinas with water has to remind us that we are mere residents of this planet. Maybe She just found out about the collection of plastic floating through the oceans of the world and she is about to cash in our security deposit and kick us all off of this planet. Life on this lovely planet, the best planet that I know of, comes with a responsibility In my opinion. If you had free rent in someone's guest house, you wouldn't be trashing it like we have the land, air and oceans of our spinning rock we call Earth. I'm not saying that the people being flooded by rain, and blown about by wind this weekend are at fault, they only happen to be where She has perhaps pushed back. now a nature story. My neighbour showed me a cell phone picture of a coyote that she saw on a local golf course . In the rough, she saw it find and catch a chipmunk. My friend wondered what was up when the coyote set the dead rodent on the fairway's edge and settled back into the underbrush nearby. Within a few minutes, a seagull circled the inert chipper and descended on the easy meal, only to fall victim to a lightning flash of fur and snapping teeth as the coyote launched itself back onto the course and nailed the bird. The coyote then gathered up the seagull and chipmunk and headed off to have its lunch. Take note wiley e. coyote in your quest for capturing the animated roadrunner,: no falling anvils, roller skates and fans, or dynamite were used to catch this seagull. Good days to everyone, jb
  3. 1 point
    Pathfinder, hectic is an understatement! I will be thinking of you and your husband and sending healing energy your way. Dianne
  4. 1 point
    Yes LADy, I can see where the presence of alligators could spike the excitement level. Good days to everyone out there, and has anyone heard from Mrs. Pathfinder. be safe and strong and fist to the sky, jb
  5. 1 point
    Glad to hear from you Violinda. Water, water, everywhere, hope you all are safe down there, we need a super hero, how bout it SheRa of the Carolinas. One of my favourite books ever was Chesapeake by Michener. You could add a chapter to that tom and tie yourself into that family tree. That war of 1812, sorry bout that. We really didn't need to whup you so bad. You guys just caught Great Britian with time and soldiers on hand. Be careful in all that water down there. Be careful of electricity in the water. Fists to the sky in Paper Bag Princess defiance to whatever bugs us . jb
  6. 1 point
    So, PD is now part of my permanent medical record... Clinical notes from my MDS appointment this week -- Diagnoses This Visit Parkinson disease - Primary ASSESSMENT: Mr. Superdecooper is a xx-year old man with the above-mentioned history and idiopathic parkinsonism confirmed with DaTscan who is currently doing reasonably well on current regimen of antiparkinson medication, but may benefit from slightly higher dose. Change detailed below will be made. PLAN: 1. Continue Rytary but change to 48.75-195 dosage (one tab 4 times daily). 2. Continue Azilect (rasagiline) 1 mg daily. 3. Continue daily regimen of physical activity and exercise. 4. Followup visit in 6 months.
  7. 1 point
    Dear Friends, It has been a long time since I have posted. Tackling PD alone isn't fun, but felt like I needed some insight from this community. I am finding that my tremors worsen, or become more noticeable, when I venture out of my home. Of course, they are always present, but I notice they spike when I leave. Consequently, I am the first one to leave a party and come home early or, more often than not, I just choose not to attend social gatherings. Does anyone else struggle with this form of anxiety and Parkinsons? Curious in Central California
  8. 1 point
    Thank you so much, friends. Your suggestions are top notch. The tendency to become a recluse resonated with me. I'm seeing a therapist, and she's great. The suggestion to do some role playing, or preparing for awkward situations, is good stuff. I meditate often, but typically forget to take deep, cleansing breaths during the anxious moments. Thank you all!!!
  9. 1 point
    Thanks for thinking of us and for the encouragement, jb. The hurricane has slowed to 5 mph, a good thing except for the fact that it will mean a lot of flooding--and over a very large area. I keep watching the reports to see if it's sneaking up to the Chesapeake Bay which goes right up the middle of our tiny little squinched state (which doesn't seem so little except looking at it on a map where it can hardly even be seen). BUT...farther up the Bay, in what is now the Baltimore Harbor, is where our National Anthem was penned by Frances Scott Key while a prisoner on a ship just off shore when he looked out and saw our flag raised the next morning signaling our victory.* So I guess sometimes good things come in small packages. We're small, but we count.** *204 years ago this evening, on Sep. 13, 1814, at the "twilight's last gleaming" at Fort McHenry, Francis Scott Key proudly hailed the star spangled banner. It was famously still waving the next morning. It still waves--and the republic for which it stands still stands--today.* (Bill Kristol) The War of 1812 was a conflict fought between the United States, the United Kingdom, and their respective allies from June 1812 to February 1815. Historians in Britain often see it as a minor theatre of the Napoleonic Wars; in the United States and Canada, it is seen as a war in its own right. (Wikipedia) **Besides, which, the Maryland countryside is just beautiful (and horse country), and the crab cakes at little crab shacks and places of fine dining around the areas of the harbor and bay are especially scrumptious! Interestingly, too, the northern part of Maryland was Union, and the Southern part was Southern. Those traits and traditions still seem to hold even today in many ways.
  10. 1 point
    Since I have a Lyme-related condition rather than Lyme itself (for instance, I don't have joint pain or racing heart), it is hard to say. A person definitely diagnosed with Lyme would be better able to answer that. I do know that there are some people with my Lyme-related condition who also have Parkinson's. Perhaps when you find a Lyme-related doctor, he/she will be able to answer your question better. Be aware that some of the docs that may be recommended to you may be "iffy," so it's very important to do a search on ratings and reviews of any recommended to you. I didn't go to any that were recommended to me after reading about them. There is one at Johns Hopkins that I have been thinking of contacting that I would feel very good about, but I don't know yet if he sees people in clinic or is mainly a researcher. Either way, I think he could be a wealth of information. I have so much else going on medically that I've put it off. Was just in the hospital for several days due to abdominal bleeding, another issue. if I didn't have faith in the Lord that He is in control and has a reason for these things, it would be much, much more difficult to handle my feelings emotionally. He has lovingly provided so much that all I can do is thank Him every day. :-)
  11. 1 point
    Look on line for IGeneX Labs in California. They will send you a kit that you take to any lab to have your blood drawn and then sent back to IGeneX to test. They are one of the best labs to get more accurate results than most. You'll need to find a Lyme-literate doctor. Be sure they are Lyme literate, or you''ll just waste your time and money. There are Lyme Organizations on line that can help you. Don't go to the LDSA. ILADS is the more up-to-date organization for Lyme Disease information. I'll be doing the same testing at some point, too, as I have a Lyme-related condition in addition to PD. Best wishes to you-- https://igenex.com/order-a-test-kit/
  12. 1 point
    Lyme is devilishly hard to accurately diagnose. I think there's only one or two labs with a reputation of getting it right. If you can get that test done it might give you peace of mind. That said, not everyone responds well to any given PD medication. Being on my phone I can't see if your signature block lists meds, but if you can post what meds you have tried, including dose and frequency that might help. Including non-PD meds helps too.
  13. 1 point
    Zero, you are honestly more hypochondriac than I. I mean I get you, I know what it's like when medical doctors give you late/wrong diagnosis for years, then you get paranoid about anything that can go wrong. It kind of shattered my psyche when all my health issues started because I realized how fragile it all is and how little we know in science in regards to neuro stuff. But lets look at the facts: You're on multiple neuroleptic meds and your symptoms are relatively minor. People can randomly develop neuro stuff alone. Ataxia, dystonia, akathisia, so on and so forth. Many of the above are also part of an umbrella of symptoms for stuff like PD and ALS or MS. But you don't showcase any of the classic signs if either. Go to the ALS message board and ask. Your tremors don't resemble PDs at all. And ALS starts with muscle weakness, like you can't pick up a pitcher of water, you drop your glass of water type muscle weakness. All the symptoms you are displaying are also symptoms that can be caused both by and from tolerance/interdose withdrawals of benzos/ADs. Further there's literally no concrete tests for diagnosis most all this stuff. So doctors will go off the symptoms most of the time, and you don't showcase them enough. Is it possible you are in the very early stages of PD where it's not advanced enough to showcase the classic signs? Possibly. But there's literally 1) no way to tell until such a time and 2) nothing you can do about it regardless. So I would suggest you stop fixating and being obsessive compulsive because no answer is going to be satisfactory to you. Just take care of your health, increase your D by sun exposure or supplements. Do at least some light exercise everyday, and avoid a lot of sugar. These things are helpful for everyone, and especially so for people with things like PD, so just cover your bases. maybe try to get off your meds, and be content to know that's all you can do right now, and that's all you can know right now. I've accepted my muscle tensions at some form of dystonia/extreme RLS for now, because there's literally nothing I can do about it except takes meds which I don't want to. I've gotten my remeron usage almost gone, and after an initial stage of super anxiety and paranoia, I feel better about it. My sleep is still shit, but some nights are increasing towards tolerable. You can just take it one day at a time, but obsessing and fixating to your level isn't going to help you better, nor is knowing. Also the fact that you said some stuff come and went, makes me think even more it's the meds. I had the same thing with benzos and remeron. Coming off benzos I hate all kinds of crazy shit, neuro, stomach, sleep, etc. Remeron was different but also bad.
  14. 1 point
    Good morning everyone. A change in the weather happened this weekend. the Wednesday past the temp hit 90 F in the midday for a daytime high. It has been a very hot and humid summer. This morning, I awoke to about 42 F and with a welcome sigh of relief I pulled on a sweat shirt over my tee and very much enjoyed the cooler air. So did the horses and all the other barnies. My garden was too big this year. What with getting my brain probes put into my cranium, the recovery, and the shoulder tenderness, becoming one year older., extra strength sapping heat , well I had trouble staying ahead of the weeds. However, I did still get an amazing amount of produce. The shelves are getting full of canned pickles, and tomato sauces and vegetables into the freezer.The apple trees which just grow the apples for free, are starting to drop the fruit. I have to get them picked off of the trees before the deer eat them all up. I have to pace myself a bit., There are always things that we want to go to, family to visit, repairs to be made to thisa old house, I visit Mom at the County Manor Nursing home. , my daughter and husband just bought a big country house on a big lot that I want to help to paint and fixup.and I need a nap. And you know what, A nap is going to win today. good days to all. jb
  15. 1 point
    Normally, I'm a very level headed calm person, except when I'm driving :). I've been on Rytary since it was approved by the FDA. On a couple of occasions, maybe 4 or 5 times over the past couple of years, I've experienced extreme anxiety. The last time was an outburst on vacation with the family while I was looking for a parking spot. Needless to say my family wasn't pleased with my behaviour nor was I. It sucks when your not in control of yourself. I suspect that my Rytary dose hit me all at once rather than spread out over the 4+ hour period as usual. I see my MDS next month and will make a point to discuss this issue with him. Dave
  16. 1 point
    While it's true that many who have Parkinson's have lost their sense of smell, it is not a reliable indicator for the presence of the disease. You can have Parkinson's and still have your sense of smell. I do.
  17. 1 point
    Update on baby Liam....all is well. He was born on October 18th, a couple weeks early, but healthy! I did end up back in the hospital with a blood clot, but am home now enjoying my kiddos, and loving our new addition <3
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