• 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    


Popular Content

Showing most liked content on 05/24/2017 in all areas

  1. 4 likes
    Actually, a pretty good post, IMO. I could have written it myself. I was extremely angered when my wife kept mentioning how her social life has been ruined by my lack of interest in what we used to enjoy together. I didn't ask for the change in out social priorities, and I certainly don't like it; but I considered it a guilt trip on her part. Was I being selfish? Maybe, but marriage is a two-way street. I need to understand her concerns; but she needs to understand that my mind is now different than before. I'm actually appalled by some of the responses here. I don't think you're a moron, and I don't think that you have to be "nicer to her" so she doesn't bail on you. You are reacting to negative cues like any other normal person would. Talk it out; do research together; and find common ground, if possible. If she doesn't attend all of your Dr appointments; bring her along and talk to the Doc! I think my wife and I finally worked through it, but it took a while. Hopefully, you can as well Thanks for posting!
  2. 3 likes
    Thanks Manolo ... I owe it all to Mr. Roger's neighborhood ....haha...he was a wise man! It's the 50th anniversary!
  3. 3 likes
    Update, fainting😊👍
  4. 2 likes
    Hi jb and everyone.. First of all i have to say thanks jb as often i have up and down days as i'm sure some of you may know what i'm talking about... However on my down days there's times i could be browsing through the forum and i come across a post from jb and all of a sudden i feel bit better yes jb you lift my spirits so a huge thank you and take care. em
  5. 2 likes
    Be afraid, very afraid . . . la-fi-hiltzik-trump-disabled-20170522-story.html Hope NPF and others come out with strong positions on this one. SS Disability is a benefit we pay for through our payroll taxes and a lifesaver for many with Parkinson's disease and other debilitating conditions. "Disability insurance is an inextricable part of Social Security. It’s a core part of the program, just like retirement benefits. It was created as an add-on to Social Security in 1956, under President Eisenhower. It’s financed by the payroll tax, and the reserve funds that cover both aspects of the program are more entwined than ever, thanks to a reform measure passed by Congress in 2015."
  6. 2 likes
    Of course we get you!! I admire you for the care you give your Mother. Fighting her battles with medications and making her as safe and comfortable as you can. You rock!🤗
  7. 2 likes
    My husband has vascular dementia and Parkinsonism. We are fourteen months from diagnosis, our lives have been affected in so many ways. I am his full time caregiver and happy to do anything for him. I am a very social person who has a lot of friends and activities. Hubby can still be alone so l can do some socializing, but we had to adapt quickly when dealing with this new challenge to our lives. I adjust how often l socialize , my friends also know if l cancel at the last moment l am needed at home. I don't resent that l am not as social because he has cared for me with such devotion and would do it for me in a heartbeat if the roles were reversed. Have you tried socializing at home, or one of your favorite places to go? I know hubby has anxiety sometimes, here at home when people drop in he is more comfortable. Maybe talking with your wife and meeting in the middle can give you both a workable solution. l wish you well, this PD is an awful lot to deal with!
  8. 2 likes
    Ah... Thanks D. You get me!
  9. 2 likes
    I read thru the posts, evaluating different approaches to PD. Most of the time, I seriously read the posts, and sometimes I read with elevated concern. It is such a joy to stumble on a post that makes me smile and elevates my mood. LAD's posts have made me smile more than once. Thanks LAD..
  10. 2 likes
    Boy, talk about missing the point of the post. Thanks for bringing sunshine to everyone's lives! Telling us we are at a disadvantage and keeping our fingers crossed that our loved ones stick by us?? I have two "care-givers" in my immediate family, and two others in my extended family. I know the drill, but thanks for sharing your opinion. Thank goodness you will never be in my future! I will appreciate my wife, and as such, she should appreciate me for who I have become. We are a team, and hopefully we will stay that way; without having to rely on narcissistic care-givers like yourself. And when you quote my post, please use it in its entirety, so you don't "frame" your opinion. Move along please.... P.S. My apologies to the OP. IM me if you wanna talk further about this topic, as we are in the same boat. Another good subject matter polluted, unfortunately, that needs to be moved offline.
  11. 1 like
    Well, It is a beautiful day in the neighbourhood, a beautiful day to be a Neighbour. Good Morning everyone. Em, I think that the trifle sounds yummy. I love the substitutions. LAD, busy and upbeat as always. Linda, You have a very strong faith and I can see how it sustains you. Pathfinder, I have trouble with low blood pressure sometimes making me feel faint. Is that what happens to you. I remember when my Dad had to stop driving because of his Alzheimer condition. It was a difficult thing. Welcome aboard Manolo. Whazzup on the Delta.? Hi Ella, and Serenity, wise observations. And here we are in the 2nd half of the month of May, in the year 2017, as we record years. It is time to get my garden planted but it is still too cold and wet. We have been eating lots of asparagus and rhubarb has started. I cut the grass yesterday for only the second time. We have had lots of rain, but not enough heat for hay and stuff to really grow. Well lots of jobs and errands to get done today. Heartfelt thoughts go out to Manchester and the loss of lives in that despicable bomb attack. (Rot in Hell; Bomber) All the best to my Parky Friends. jb
  12. 1 like
    Another awesome quote, LAD! I loved Mr. Rogers. He taught me how to tie a shoe. He was the eptiome of goodness. Ellaangel, I agree with you that we're meant to help each other.
  13. 1 like
    I love that quote Lad! So true, there are always helpers, reminds us we don't have to carry everything on our shoulders alone. I believe we are all put on this earth to help one another, we are not living just for ourselves. We are all "instruments" for each other. We must "allow" people to help us, not only do we receive the gift of help, but it allows the person helping us to receive the gift of giving.
  14. 1 like
    @ shakes, People who don't have PD,do not exactly know how we feel.The cognitive issues could be very fustrating,and the anxiety that comes with it makes you become anti=social.The decline in executive functioning and slow processing of thoughts could make the social anxiety worse.So I would suggest you try to socialise more.I feel exactly the same way and when I think about the future,it gets more scary.Conditions like PD put additional stress on relationships,and I have read some online articles,where it led to divorce,because the caregiver just couldn't cope anymore.Let 's just pray that God would prevent us from losing our minds completely.I think you should test your mental faculty more by doing crossword puzzles and practise multitasking at home,especially now that you stop working.I am temporary on disability,and thinking of going back to work.I am not sure how I will perform,as my job is very demanding and require some multitasking.I noticed vigorous aerobics helps improve the cognitive issues temporarily.I have experienced getting lost while driving,and I noticed,this happened whenever I am anxious thus not concentrating well.It is hard trying to convince wifey that you have PD,and because of it you cannot socialise,especially when your wife is social.Not to talk of persuading wifey to go to Doctor's appoinments with you.Till now my wife sometimes forgets that I have PD,and I usually have to remind her."Miracle seeker" you are not alone.All PWPD are seeking miracles too.We all need miracle asap.Do PWPD develop severe dementia?I am not so sure about this.I understand some develop mild dementia and others do not.But I don't know what percentage of PWPD develop dementia.@ shakes,was it the cognitive issues that made you stop working or other symptoms?
  15. 1 like
    Cyber hug coming at ya!!! Thanks P. We should move along though... CG's do not have PD so our opinions do not matter. shhhh... let's go.
  16. 1 like
    Miracle you are a huge contributor on this forum both as caregiver and as a friend to many of us with PD. Do exactly that...move along from this thread and stay positive! There's always going to be personality upsets. Thank you for being you. D
  17. 1 like
    First off, the bias in that article dripped off my screen and onto my keyboard. But, that aside, while the enrollment in SSD might be dropping slightly over the last couple years, bear in mind that SSD is probably the single most abused "entitlement" program right now. Vast numbers of people got moved, that really shouldn't have been, from unemployment programs to SSD because that was easier than actually dealing the problems related to long term unemployment of large numbers of people. It is far too easy to get SSDI. See There are massive cuts that can, and should be made to all federal spending categories, SSD included. If the cuts are done intelligently (and, of course, they won't be, and probably deliberately so) those cuts shouldn't impact those that have actual disabilities.
  18. 1 like
  19. 1 like
    Shakes, you explained your situation very well, and I'm sorry some misunderstood that you were joking about divorce. I'm sure those who got upset did not understand it was a joke and would have replied in their usual very compassionate and kind and welcoming way otherwise. So please don't be put off by their responses. They are good people. And you sound like you'll fit in very well. Welcome. I can totally, totally relate to what you wrote about cognitive issues and how hard it is to remember words and also the problem of forgetting in the middle of talking about something just what it was you were talking about. Also, I've found I've had to ask people to please talk directly into the phone and to slow down so that I can follow them. I explain simply that I have Parkinson's and that it makes it difficult to keep up with what people are saying when they talk fast. It's interesting that I've had various reactions to that...mostly from young people whom I can tell feel really uncomfortable to slow down. Seems they don't really know how to do it sometimes. Understandable since they have grown up with peers who also talk fast and, I guess, have adapted. It's one of the situations that as an older Parkie makes me realize that I really am older, and I remember how impatient I felt when I was younger and had to slow down with older people. Serenity, I liked your post.
  20. 1 like
    I tried Mucuna but it made me to jumpy at a high enough dose to have good benefit. Low dose 400mg did help some but when I increased to 800mg my anxiety flared. It does help support dopamine cells though and is safe to take IMO. There are a few pub med studies on it if you search which shows it is effective for PD and safe. If it is of interest here is my supplement protocol which has really helped me (put together with help from two amazing naturopaths who treat just PD)
  21. 1 like
    I've had the Duopa pump for 11 months. It gives me a steady dose of carb/levo for up to 16 hours/day. That means no on/off fluctuations. It totally eliminates the issue of having to schedule my medication around mealtimes. It gives me the freedom to schedule things and expect that I won't have a sudden off period and have to cancel at the last minute. I can take a nap without worrying about the alarm on my phone waking me up. I never miss a dose or wonder if I took a pill. I still have PD. It didn't l make my balance any better or make my eyes less dry or fix my faulty thermostat. I still have bladder and bowel issues. It didn't cure my slowed thought processes or restore any lost functions. Unlike DBS, it did not worsen my cognition. The dose can be fine tuned by my MDS to give me maximum benefit with the least amount of dyskinesia. If I am stressed or tired, I can give myself a little extra at the push of a button up to five times a day. I love my Duopa. Dianne