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  1. Today
  2. Had a PD -0 ...ME - 1 moment today hiked a trail to incredible lookout today!
  3. I shiver from head to toe when I get cold. It usually takes a hot bath to get over it.
  4. I have struggled with speech since dbs, including slurring & weak voice. This was not a problem prior to dbs. I discussed this with the neurologist who made adjustments which did help but speech is still a problem.
  5. I shake a ton on my left side, which is the side with symptoms, when really cold. Uncomfortable for sure!
  6. Yesterday
  7. El xantohumol es un antioxidante componente de la cerveza ha demostrado mejorar la función cognitiva en ratones. Proximamente veremos estudios en Parkinson utilizando este componente. La cerveza previene o mejora el Parkinson? Aun no lo sabemos. Saludos, DMR
  8. The first thing that I had to adjust for was brushing my teeth. I could no longer move the brush in circular motions. The quick easy fix was an electric toothbrush. Then I could no dry/style my hair with my circular brush so I got a different hairstyle and wore my hair straight. I started dragging my foot and tripping frequently, so I started wearing sneakers more and more. A lot of little things that no one noticed but me. Before I started taking medicine I couldn't always cut my own food, I couldn't clap my hands and both my children played high school and travel sports. The last straw was when I was having difficulty turning the steering wheel. Literally the first day I took mirapex all those symptoms went away. I never experienced compulsive behaviors, but I definitely had sleep attacks. I once fell asleep while I was talking. I believe it's time to start/change medicines when your quality of life is being impacted. Delta
  9. Hope you enjoy it
  10. Watching the first episode now. Thanks. Dianne
  11. Here's my lemon poppy seed bread recipe. I usually double this, and for my loaf pans that makes 3 loaves. It's pretty scaleable, so feel free to go up or down as you need. 8 Tablespoons of Butter 1 cup sugar 2 eggs at room temperature the zest of 2 -3 large lemons 1.5 cups of GF flour (I prefer King Arthur gluten free baking flour, if you can't find it Pamela's Artisan Flour is good too) 1/4 teaspoon xanthum gum 1/4 teaspoon baking soda 1/4 teaspoon baking powder 1/2 teaspoon salt scant 1/2 cup buttermilk 1/2 to 3/4 teaspoon vanilla extract scant 1/4 cup orange juice or lemon juice (I sometime do half orange half lemon) 1/4 cup poppy seeds Glaze: Juice of a lemon (or more depending on how much glaze you want) powdered sugar Preheat oven to 350 degrees. Lightly grease and flour a loaf pan. Combine buttermilk, orange/lemon juice and vanilla in a small bowl and set aside. In another bowl, combine flour, salt, xanthum gum, baking powder, and baking soda. In your mixer cream sugar and butter (beat until fluffy). Beat in eggs - one at a time - and chase it with the lemon zest and then the poppy seeds. Alternate adding the wet and dry ingredient mixtures to the batter, starting and ending with the flour. Once you start adding the flour you need to be ready to go quickly. Gluten free is really sensitive to being over-mixed. Don't go so fast you splatter the mix everywhere, but the less time the mixer is running once you start adding the flour the better. I usually stop the mixer about half way through and scrape the bottom as with my mixer as I find there is a layer of butter/sugar that doesn't mix in well if I don't do that. And I do that again at the end too. Also you don't want to leave it sitting after mixing for very long so have the loaf pans greased and ready and the oven hot. Pour the batter into the pan and smooth the top. Bake for 45 - 60 minutes, or until a tooth pick comes out clean. Baking time will depend on how thick you make the loaf. First time I made this I doubled the recipe but only used 2 loaf pans instead of 3, and as a result of the extra thickness it took over 90 minutes to finish cooking. If you make them into muffins instead of loaves the baking time will probably be less. Remove from oven and let cool for five minutes, then turn the pan upside down (over a plate!!) and tap on the bottom until the cake slides out. Continue to let cool. Combine the lemon juice and powdered sugar, stirring it into a glaze, and top the cake as desired. I found it takes an astounding amount of powdered sugar relative to the lemon juice to get the glaze thick enough. I've never measured it, but I'd guess that if you had half a cup of lemon juice you'd need at least a full cup of powdered sugar. I just keep adding sugar until the glaze gets good and thick. It should still drizzle off your spoon, but slowly. I usually coat the bread with enough glaze that you only sort of see the bread through it, and I let it drip down the sides. You may find you like it with more, or less glaze. Let the glaze dry for a while before you wrap up the bread. How long? I dunno. I just go by when the glaze cracks if you flex it. The bread does freeze well, so I like to make at least a double batch and freeze whatever won't get eaten within 2-3 days.
  12. Delta - What were your symptoms the first 6 years? It's hard to use my right arm and The good thing I was thinking about meds was getting it back. Thank you
  13. Otorlorin, I have no dx yet, except neuropathy, but i get tingling and numbing mainly on the side that has pd symptoms of no arm swing, limping, shoulder pain and more recently stiff neck thats almost constant. Plus, I get burning pains in the face on that side and now my chin and jaw get numb, which I know is related to my neuropathy. My young neuro, who I think was a resident neuro and who wasn't much older than Doogie Howser, didn't care about half my pd symptoms, and he dx me with neuropathy. Yet I never had EMG to determine which type I have. He advised me to take Alpha Liptic Acid, CoQ10 (aka Coenzme Q) and Carnitine. Those have helped to lessen the neuropathy issues. I wish i had something that helped with my loss of smell, fatigue, sleep issues of insomnia, weird dreams and kicking and hiting wall when asleep and other symptoms that could be from PD or something else.
  14. I agree with Stump and here's my add. I was able to push through my symptoms for the first 6 years no drugs. There came a time when i could not safely drive any more and I started mirapex. Over the last 6 years my drug intake has progressed as my symptoms have progressed. I have always exercised from being a 6 sport athlete through junior high to a 3 sport athlete in high school. When I was diagnosed I was playing tennis 4 days a week, yoga 1 a week and an hour cross training class twice a week. I can assure you exercise may slow progresion of PD but it does not stop it. I have remained stable for the last 2 years on the same dose of rytary and mirapex . I take 9 48/195 rytary a day and still have 2-3 hours of off time. I infrequently get dyskenisiias but consider myself lucky to be able to take so much rytary without too many problems. I tried 10 rytary a day for a 2 week period and had to quit because I became disoriented and kept passing out due to low blood pressure. so yes exercise all you can. I still go to Rock Steady boxing 3 days a. Week, play tennis once a week and ride my bike 6-8 miles 4 times a week. But as time goes by, you will probably have to take some medication. Don't fear it, but do prepare yourself for it. Medication is not any sort of failure on your part. It is simpler addressing your disease and improving your quality of life. Delta
  15. Oh and forgot to ask, yet again, what your screen name means?
  16. Yes, please feel welcome. Look on the bright side- you made a memorable first impression....And second....And third.... except apparently on new normal 😉Sorry I just couldn't help myself. Well I could have, but I would have regretted not making the joke for at least thirty seconds. By the way, I'm sorry about your wife, that's stressful. I recently spent a week calling the Dr everyday waiting for tumor markers to come back. I stayed with friends at that point just so I wouldn't go nuts. And it's hard to be the person who's job is to be there. I can count on one hand the number of times in the last decade I managed to delude myself that my brain surgery was harder on me than my parents. And I'm sorry you have this new health concern on top of everything else. Definitely saying prayers for you and your wife. Sorry I didn't say that the first time. I plead surgery brain and no sleep for thirty hours. Please let us know how things turn out for you and your wife. Hang in there Feisty
  17. Feisty...a very loud lol.....we needed that. Let's hear from you Kaypeech....i want to know you r ok...a bad intro to the forum...please feel welcome. NN
  18. My sister & I took my mom to Italy with a tour group this past summer. My mom had always wanted to see Tuscany where her grandparents lived. I was terrified but so glad we went since my mom has had some health issues recently. She would not go now. LAD
  19. HI, never heard of this.You can ask the pharmacist on this web.
  20. Hi papa57, thanks for responding.
  21. Kaypeeoh I'm pretty sure you just set the new fourm record! I know you beat mine I completely agree with new normal. The thing that made me the absolute saddest about my recent illnesses wasn't the feeling miserable, it was realizing I was wasting time I could spend with mom. If your symptoms are easy to ignore than just wait awhile So we're all planning for the autumnal equinox, in 2078, At 7:04 a.m., when sarurn is in retrograde then? I'll bring the sparkling apple cider
  22. So I've been watching a lot of the TV show " speechless" recently, which is awesome, go watch it right now. It's a sitcom about a British mom, lazy dad, smart aleck first born son, geeky middle boy, and ultra competitive youngest daughter. Oh and that oldest boy, he not only has cebral palsy that keeps him from speaking, but NOT communicating, he's actually played by an actor with CP. The show was created by a writer/producer on "friends" and is basically inspired by his life as the 'normal' child of a 'special needs mum' . I don't even LIKE sitcoms, but this one doesn't just make you laugh, it makes you FEEL. And not in an after school special sort of way. All i can say is all the families I know in a similar situation (including me dealing with my mom's dementia) is sure they are being spied on for the show. Me and my Best Friend, who's got a daughter with severe developmental impairments, have to pause every few minutes to say "that's exactly like the time when..." Unfortunately speechless is still a baby, not even a season old, and still not officially renewed. Any way, my point is I needed more entertainment. So I decided to write a sitcom on my life And so here's a scene from the 'pilot', reacting the unsuccessful bubble bursting of a family member- Dad- hi kid how you doing? Wendy Voice over- that's my dad. If he were any deeper in d’ Nile he would have drowned. As it is his body has got to be pruny from all this time spent floating up to his earlobes in it. I'm an only child, yet somehow I didn't expect to grow up to be the sole adult in my family Wendy- (glances at mom) fine I guess Dad- how was your drs appointment? Wendy (still looking at Mom)- good? Dad - so the Parkinson's is better than? Wendy- ummmm… let me call you back on my cell phone. (Hangs up landline) excuse me mom, I need to go yell at dad Mom- he doesn't understand Wendy- no he doesn't (kisses mom on the forehead than moves to the hallway pulling out her cellphone) yeah, hi Dad. It's me again… I don't know what part of incurable progressive neurological disease you didn't understand…(sighs)... Yep mom's dementia isn't any better either Vo - the man has two Masters…. And multiple traumatic brain injuries… three chopper crashes in Vietnam and two major car accidents will do that to a person. Until a decade ago he was the Ill one in the family. Now I'm convinced he's going to outlive us all… including that kid who's baby shower I attended last Tuesday… my dad's just too stubborn to die. Not that I want him dead, just a little less dense than depleted uranium would be nice Wendy- ...okay I love you too Vo - That's the first thing I said all day I actually meant. /Act break/ I think the scenes funnier with the preceding stuff, but I'm still not entirely happy with the teaser, maybe when I'm happy with it I'll post it. Surgery went so well today insurance refused a second night in the hospital, that didn't entirely please my medical professionals, given I still haven't been able go pee without assistance. My Pollyanna impersonation is busy saying everything will be fine, I'm going to be great once I haven't been awake for 33 hours straight. The Vegas impersonation is busy trying to start a betting pool about how long before I'm right back there. At least this time they drained my bladder before sending me home, instead of trying to send me home without doing anything about the fact I hadn't peed in 12 hours. The nurses aide who wheeled me out and I have a history, she's been with me at some point during all three admissions in the past month. So when I said my usual "don't take this the wrong way but I hope I never see you again" it turned into an Abbott and Costello routine. This relationship just isn't working for me any more, I've got new interests, like not being poked with needles We've been growing apart... I'm pretty sure this giant bariatric chair is responsible It's not you it's me. It's just I've changed since we met, I've quit the destructive relationship with my ovary and lost ten pounds. I need to explore my options Like other hospitals *And the last one that had us all bursting with laughter- It's just the wrong time, wrong place I don't know if this is the wrong time but it is definitely the wrong place A friend found me because she recognized my laughter, which was a really sweet moment I wish I could remember all the clever things I said last night. One nurse, who was expressing sympathy for mom and I developing our respective diseases so young I gave my standard "yeah, I come from a family of over achievers", made her bust out laughing, my "gotta catch them all" remark in regards to my long list of diagnosies she didn't appreciate so much demanding "not tonight!" Got lots of material for my 'sitcom', I think there's a trilogy in there somewhere. Now if only it would write itself.
  23. Will do. Just give a bit until I can use my laptop instead of my phone.
  24. Last week
  25. Murray in answer to your question...MSA is multiple system atrophy. In short, according to our neuro ,when PWP has neg DaT scan, clinically presents with PD, responds to l dopa for some time...AND has orthostatic hypotension...it is more likely than not MSA. This is assuming other autonomic things have gone awry. (Google it) DH has multiple bilateral neuropathies atypical of PD...more typical of MSA. He is progressing quickly. We've applied to VA...have two docs dx of PD...he was 200 yards off shore de militarized zone in Vietnam...no fresh water...used sea water for everything. Probable cause is Agent Orange. I have neg DaT scan. Serious autonomic system weakness with variable BP and orthostatic hypotension. As rare as it can be, neuro says it is more likely than not we both have MSA. He with MSA C.... me, MSA P Discovery Thank you for your response. I prefer to ask questions of the CG's who have seen it all. They have proven to be patient and understanding with we who are underinformed. whenever I feel fear or apprehension, I talk with them, and always feel safe. They have carried a heavier burden than I, and surpass everyone by their kindness. NN
  26. Huh....? Tai Chi is not related to :"aggressive fighting". Just the opposite - it helps to balance masculine/feminine, ying/yang, energies. Tai chi is a form of qigong. You learn how to neutralize an aggressor.... Check it out...
  27. So...with both of us having PD...and likely MSA...our world is changing. Communication is harder. What works for me is having responses already qued up.. instead of "WHAT are you doing!"........I say ......"How can I help you? ". Kinda hides the panic when I see him walking the edge of a building. ""Whaaaat?" Instead....... "I cant hear you." "I have NO idea what you are talking about."......... instead......."That sounds like a good idea." "I did not take your...." instead......"Let me help you look for it." "You've told me that again and again.." instead......" I like to hear your stories" i am serious. Instead of having unkind and frustrating responses, I am creating generic responses all lined up to use...then eventually we get back on track. works for me...what works for you? NN
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