Jump to content
helplinedonate
  • 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

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • 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    

Trying hard

Members
  • Content count

    353
  • Joined

  • Last visited

  • Days Won

    15

Trying hard last won the day on November 8 2015

Trying hard had the most liked content!

Community Reputation

232 Excellent

About Trying hard

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    Southwest USA
  1. Making good memories

    Grunt You are two very lucky people to have each other! So you get out there and make the best memories possible. Best wishes to the two of you
  2. I can't imagine anyone wanting to live forever but I don't think that really has anything to do with any drug that can help a pwp who is in the late stages of the disease. I have yet to meet a pwp who is on life support, however most can't talk, or swallow, or walk, have dementia and a whole host of other problems that would scare the life out of any newbie to this forum. That being said this is a drug that may potentially have the ability to improve the quality of life in a stage 4 or 5 pwp. It shows promise at the very early stages and brings hope, and at some point for all pwp's hope is really all there is. When it comes to PD quality of life is everything and not just at stage one, but all the way through to the end, and if at the later stages there could possibly be a drug to improve that quality I would be sooooo happy for those who still have their pwps with them, even if it was a pill that would have to be taken every single day, but then isn't that the way it is already with PD drugs. We cannot continue to have an attitude that this is just the way it is, that is self defeating. Shop guy I know you have only recently been diagnosed, but as miracleseeker said the sad fact is you will get worse, and when you reach that point you will grasp for anything to feel better, even Oliver Sacks did treatments to try and extend his life. It is easy when death is at a far off place in your life, or so you think, that one can talk about not wanting to live forever, but when you are confronted with death in a day or week you will want, or do whatever you can to postpone it as long as possible, and still face your death with dignity. I mean no disrespect to you shop guy it is just that I have walked the walk, and have seen not just my own DH but a host of others and there is little hope once you pass a certain point, and any drug that might help is hope especially for those who are just now starting their journey. If researchers wish to try and extend life forever who knows what will come of that research, in the meantime we all need to continue the push for a cure. Best wishes to everyone TH
  3. Personality Changes after DBS?

    GPi-DBS is usually the target for dystonia
  4. My Dreams

    Just Nobody..................... Why don't you ever answer anyone's questions? Why haven't you introduced yourself? Just what are the half truths, wrong information and misinformation that you have read on this forum Just Nobody? Hmmm? On what do you base the fact that this group of people haven't helped anyone? No one on this forum has ever claimed to be an expert except the experts, because everyone knows no two people with PD are the same, that goes for the PD as well as the personalities. If you don't know which experts I am talking about maybe you need to ask. If you want respect Just Nobody how about giving everyone the respect they deserve. Discovery is a fine person, and an addition to this forum, your words are uncalled for. You are a class act Discovery to steal miracleseeker's words. I wish you all well.
  5. Personality changes/DBS-STN

    Any one who knows me knows I absolutely believe in the benefits of DBS, I have lived with a pwp with DBS, I watched him regain his ability to walk without a cane, get out of a chair without help, etc and I believe the positives far out weigh any negatives to the surgery. Just because I didn't see any personality changes in my pwp I think enough small studies have been done that touch on this topic that we do need to push for more research in this area, and I am not willing to call anything absurd especially when it comes to PD as everyone is different, and DBS is probably the same. I would hope that this new DBS forum would not close the door on caregivers pwp's who are seeing personality changes in themselves or their pwp from coming here to be able to discuss it, not would I hope that caregivers with pwp's who have had DBS would be excluded from this forum. I have included a few more sites for reading and they also include a lot of good things as a result of DBS, lets just please not close the door on any possible side effects of DBS as none of us knows what future research may provide; good things and perhaps some not so good things. Pretty much the same as a pwp who has not had DBS. We are all still learning. www.dbsprogramming.com/2014/02/07/ethics-dbs/ http://link.springer.com/article/10.1186/s40035-015-0034-0 http://jnnp.bmj.com/content/74/11/1584 www.encyclog.com/_upl/files/2012_AJOB-N.pdf A simple google search will turn up other sites, just keep an open mind and push for more research in this area, involve yourself in cognitive testing every year. Michael you should have one coming up soon if you haven't already. Rather than closing the door, keep it open, and keep an open mind. Remember those that come next will learn from all of you today.
  6. DBS and Religious life

    From Neurology Now December 2012/January2013 Pg 23 Not Just Tremor by Tom Valeo "Losing Religion?" "People with PD even have a tendency to lose their interest in religion-a change more readily considered philosophical than pathological. According to research by Patrick McNamara, Ph.D., of Boston University School of Medicine, people with PD report significantly lower levels of interest in religion. Brain scans show that this lack of interest coincides with changes in the prefrontal cortex but does not correlate with depression, age, education, intelligence, or medication."
  7. Personality changes/DBS-STN

    www.hindawi.com/journals/pd/2015/490507/
  8. VETERANS DAY IS TODAY

    Here I am again as I think you cannot say it to many times....... Our veterans have sacrificed much to protect each and everyone of us, and they deserve so much that a thank you just doesn't seem enough. So for all you veterans on the forum I salute you, and from the bottom of my heart a great big..............THANK YOU!
  9. Has anyone looked at Buddhism to help deal wirh stress?

    rich No one here on this forum is digging for dirt, everyone has tried to support you and this thread. I even tried to bring to topic back on focus, and you my friend jumped the gun and made an assumption that we were all out "to get you". That is hardly the case. I saw no reason for me to complicate my post on Reiki with any stories or explanations. I wasn't imposing any expectations other that to begin an open dialogue. Your remarks to other forum members have been rude, if not down right malicious, and that goes against one of the steps within Buddhism. I am not being malicious is saying that, just pointing out to you that you seem to be setting yourself up to believe that we are "out to get you". It is far easier to get angry than to just for a moment stop and think. We all have to work really hard to be better people, and all I have seen is people posting to help you become a better person. I have had my differences with many on this forum, but despite our differences I will always respect them, and Ab-normal can attest to that. All of us on this forum can grow if we choose to take criticism, but that my friend is up to you. Please remember the "Four Friends" of Buddhism: Loving kindness, compassion, sympathetic joy, and equanimity. Your anger and doubt about what the intentions of everyone is, is standing in your way. Relax, and focus on the tenants of Buddhism, because if you do...............you will win. Of that I have no doubt. Best wishes in your search.
  10. Struggles and Thoughts of a Caregiver

    Today is Veteran's Day To all the Vets on this forum, thank you for your service. I salute you!
  11. Hi Clueless.............. Sometimes all we can do is our best, even when it seems like there should be something more. You are doing the best you can with the difficulty of the situation, be proud of that.
  12. Has anyone looked at Buddhism to help deal wirh stress?

    "Whatever words we utter should be chosen with care for people will hear them and be influence by them for good or ill" Buddha
  13. Has anyone looked at Buddhism to help deal wirh stress?

    What about Reiki? Has anyone tried it?
  14. Has anyone looked at Buddhism to help deal wirh stress?

    Excuse me everyone for just a moment but since Michael brought it up........... Then Michael by your own words, please keep your posts in all the other threads that you post on relevant to the topic of the thread. It's also amazing to me that this has all started up again, and for the life of me I can't quite figure out just what suddenly changed on this forum to bring all of this back again. It certainly isn't anything about the Christianity Thread or this one, nope something else has happened. Maybe someone can enlighten me. I apologize Rich for stealing your thread for this moment. I happen to enjoy this one as much as the Christianity Thread. I happen to like to learn.
  15. Muhammad Ali's Caregiver - The Greatest

    Miracleseeker That's my point, a normal caregiver says little about what they do each and every day. Along comes someone "famous" talking about being a caregiver, while the rest are so busy caregiving they don't have time to stand up on a podium and talk about being a caregiver. Only each caregiver knows what they do, and we should never judge or assume anything. However people assume one who stands at a podium and talks about being a caregiver is some how better, better educated, more experienced, and that we should all take lessons from them. I say based on what? money? extra help? Fame? How many caregivers really have that? I take nothing away from the caregiving the Champ receives, just that there are many whose names we will never know that care just as much, and do just as good a job.
×