• Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

All Activity

This stream auto-updates   

  1. Past hour
  2. BtW, Tom...use a debit card... go online to chk yr balance..all recorded..and current. 😊
  3. Tom, Glad you posted.. I relate so much. Results of diminishing cognitive/psych exams tell the story. However, it doesn't reflect the impact I'm experiencing. Yeah, I dont match colored cards...ok...that does not equate to the slaps I feel ...not just the embarrassment...but losing confidence. Lately, when asked a question, my response is followed with, "Are you sure?" Beau's Mom, Diane, often speaks of the "grief process" with each change in symptoms...denial, anger, acceptance. She is correct. I posted before that cognitive skills are the hardest...cuz one feels alone...hiding deficits...while one hands you a crutch when ya fall. Tom, I think I'm in acceptance phase now. I no longer help DH in finding locations in the car..(smile)...not only do I dont know where I am .....DH doesn't listen to I worked for a lot of letters after my name...and now it means nothing.....can't do simple math, can't follow directions from automated phone "people".... the list is long. I'm ok with it. I've posted before, but bares repeating: I'm no longer a professional, no longer a mom, I seldom leave the house...I am a shadow of myself....I've pondered...why am I here....knowing I face a long good bye.... I prayed...prayed for weeks... to know my purpose. Finally, I received an answer.....just to me...I am to be the best daughter of God I can be. Period.: Life is not about comparison, competition, or living up to expectations of others...especially those from me. It was like a catharsis..a cleansing of a life time pressure I created and carried....I no longer need to convince anyone of my worth....I am worthy. I wish this for everyone...I am at peace with PD...and I've peace in my heart. Each day I give thanks for knowing my purpose....and it is not limited to our time here.....I believe there is good ahead for each of us. I've again made a long post....Tom, I understand. Let's both hope there are some lurkers out there who can relate. love the ones you love, NN
  4. I like this, Swamper. I've had many falls to develop humility (including one in the kitchen this evening),. Seriously, though, situations that we have to admit are beyond us or at which we try but fail are so valuable in developing our character (humility being such an important one) as well as our learning to accept certain things. One of my favorite poems is about the value of acceptance and it kind of parallels the reading. And with the Lord, we always have the promise of His help to go forward in strength and courage, I'm not familiar with Leonardo Boff or the book, but I'll see if I can find it on line. Thanks for sharing it with us.
  5. Today
  6. Hi TheCount, Just wanted to say few words, first welcome to the forum. I was in your shoes exactly a year ago. I know one thing for sure is emotionally you will feel better. I was lost and scare, in tears+++. Now I feel better, less feeling poor me moment. Some mornings I still woke up and didn't believe I have PD , wished it was a dream. Try to keep yourself busy, time will fade your darkest feelings. I am working full time with two kids, I just have time doing exercise at home i.e. pushing myself to run on Treadmill about 5w and playing table tennis with the robot and bouncing the basket ball on floor. It all works out well since my dx. I am still ok, not taking any medications. I was told Just focus on the now and enjoy just being; because this present moment is a part of the future I used to worry about and soon it will become a part of the past. I am trying very hard to train my mind in this path because I am a future freak type of person. Take care yourself, PinkDaisy
  7. Ashwaghnda and mucuna (natural Dophamine) are one of the best natural supplements for PD to keep in mind. I heard some people take mucuna instead of sinemet.
  8. Thanks
  9. Yesterday
  10. I use the Natures Way-it says 530 mg, I take 1 capsule. I've used lavender oils in a diffuser, I can't say it was helpful. I really should try it a few more times for an accurate answer. How did the insomnia specialists visit go?
  11. I was paying $5. now $15. I will check with my pharm for the original coupon.
  12. These look a bit different than the one I was using before it went generic to Rasagiline. Here are three that I found. Hopefully, you can utilize!!|pcrid|95296435744|pkw|azilect coupon|pmt|e|&utm_medium=search&utm_term=azilect coupon&adid=95296435744&matchtype=e&ct_Network=g&SiteTarget=&utm_campaign=uscs&utm_source=google&campaignid=401668264&adgroupid=32808619144&gclid=Cj0KEQjwk-jGBRCbxoPLld_bp-IBEiQAgJaftVWHIyeKNY9Vjqow5TBLH_NDg5LKzyInSfWrL9B_DHwaAitY8P8HAQ
  13. Just a little tidbit from a PT magazine...when practicing balance

     on dopamine -concentrate on not moving object  (ex- holding pole) 

    not on dopamine - concentrate on not moving your body .... legs, ankles etc


    just thought it was interesting 

  14. Hello TheCount I am 52 and was diagnosed at 40 ..12yrs ago.. i have one son 22yrs .. he is great . Now well still here, and there are support groups out there we can compare notes about meds, or just everyday stuff it's good as we are all different and can pick up tips i find one med can work better with one person than the other..anyway i hope all goes well for you. best wishes em
  15. Something like this Which uses the gyroscope stable to minimize the minor tremor. Or something simple like this Which is just adding weight and constraint.
  16. I'm unfamiliar with a glove to suppress hand tremor in Parkinson's Disease. Tell me more about the product and perhaps supply a video and I'll supply you any info I can.
  17. Hi, DB. Thank you so much for your kind post.and prayers and thoughts, as well as the verse. It's good to be back.
  18. Hi everyone, This is a student from Pratt Institute. I'm currently working on a small project about wearable technology for Parkinson. I'm not here for collect any personal information. It will be really helpful if anyone can share with me some experience with the existing glove to suppress the hand tremor. It is not a heavy scientific based project, I just hope to know how the costumer really feel about those products. Thanks!
  19. Para todos aquellos que viven cerca de Gainesville, los invitamos al 15vo Simposium Educativo de Parkinson de la UF a llevarse a cabo el próximo 8 de abril del presente año. Se abordarán temas importantes como el uso de vitaminas, suplementos alimenticios, incluso la mariguana en el Parkinson. Aqui les dejo el link... Saludos, DMR
  20. Los congelamientos o freezing of gait son episodios que se caracterizan por la imposibilidad de continuar la marcha por tener la sensación como si los pies estuvieran pegados al piso. Por lo general presentan en etapas avanzadas del Parkinson y es dificil tratarlos. Recomendamos terapia física, rehabilitación, algunos pacientes desarrollan maneras de romper el congelamiento, ya sea contando, escuchando musica, o marchando. En cuanto a medicamentos, metilfenidato ha sido estudiado mostrando resultados variados. En algunos estudios ha mostrado mejoria de los congelamientos, en otros no. El modafinilo se encuentra en estudio actualmente para los congelamientos en el Parkinson ( Los tratamientos quirúrgicos como la estimulación cerebral también ha mostrado ser una opcion en estudios pequeños. Este tratamiento aun se encuentra en estudio para confirmar si la estimulación de región del cerebro PPN mejora estos episodios. Aun falta tiempo para confirmar si estos tratamientos serán efectivos, pero actualmente se podria recomendar intentar metilfenidato en aquellos pacientes con Parkinson avanzando y congelamientos, que además podria beneficiar el sueño diurno y la fatiga. Saludos, DMR
  21. Good Morning Everyone, Hi Tom, it sounds like you keep busy. That is a good thing that you can. If you get tired of cutting grass in Texas, come up to Ontario. I wouldn't trust just anyone to cut and rake my lawn, but I would let you have a go at it. Bring your dog with you, there is lots of space here for going on a hike. Hi Marcia, congratulations on the the new grandbaby. That is wonderful. Be sure that you spoil them all. That is what grandparents are supposed to do. Different bats eat different things, but I think that most of them enjoy eating bugs. Some ;people set up houses for them to live in your backyard and keep the mosquito population down. I think that the word bat comes from the ancient Greek word ,wingedbaatmouses, which translates into flying mice. That may or may not be true. Whether it is or not, have a good day jb
  22. Hello, I heard there was a new development of having DBS and not being awake for it.I wonderd if there were others here who had it. Thanks John
  23. BUt what if you have a positive DaT, but sinemet doesn't do much of anything?
  24. The DaT only report the physical structure of your uptake neurons- not their efficiency or quantity. My MDS said that even if your DaT is positive at diagnosis, so they know it's an uptake issue, they don't really look to verify if it's also a production based issue, because the treatment is the same- C/L. I have a normal tyrosine production number, a positive DaT and off the charts side effects to C/L but with perfect control and episodic attacks which render me insensible. My internists is looking into a possible adult onset cases of inborn metabolic disorders that can mimic all, some or most of the "Parkinsonian" umbrella. If you don't convert tyrosine, into l-dopa and then into dopamine it would look and act just like a positive DaTScan. And, if this is the case, the treatment isn't a whole lot different. Even if if they can prove a metabolic disorder, you could still have true PD. MSA is normally identified through the usual battery of autonomic tests- tilt table, valsalva breathing, QSART sudomotor, sweat test. The MSA patterns are distinct from PD, Pure Autonomic Failure, Essential Tremor, etc.
  25. Welcome! I'm also fairly new here, 44 years old with a 19 year old son in college. While I wish I didn't have PD, I do feel like it has changed my life in positive ways also. I am much kinder and gentler to myself now and I know my own health has to be number one. My onset was sudden and right before diagnosis I feared I would have to stop working because of my symptoms. Now my life is in balance thanks to exercise, many supplements and a small amount of Sinemet. I find I appreciate everything now - walking, exercising, laughing, my work, seeing the trees and flowers. I think because thinking of the future is scary, I now live in the present. Not that there are not times I am scared and feel despair, those come too, but not very often anymore. And I feel like I am actually healing now, my symptoms continue to get better every month. So be kind to yourself, accept the fear - we all have it and do your best to love what you have and what is around you! best wishes, Lena
  1. Load more activity