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      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    


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genden69 last won the day on March 16

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About genden69

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  • Birthday 01/01/1970
  1. From my observations and experience with DH who is in end stage, there is a time when his brain is no longer capable of the focus to want to do the things you would like him to do or be. Make sure that the problem is not depression. Medication can help depression. If it is the progression of the disease and the brain function is impaired, what is is. Loving him, taking care of his needs and making him feel secure is about all you can do. We all want things to be better and feel guilty we can't make things better. If all the medical cause boxes have been checked--what is is. If his brain were not impaired by Parkinson's, he would be eager to be an interactive grandfather, resume his painting, listen to his music. We can accept that someone doesn't play the piano anymore when arthritis has gnarled the hands in dysfunction and pain. We wouldn't force it. We can't see the plaques and shrinkage in the brain that make function difficult or impossible, but it is real.
  2. I hope what I have to offer helps. My husband has been diagnosed for 20 years. He started with hallucinations about six years ago, then Lewy body symptoms kept coming. The last three years have been the most difficult. He has been totally bedridden for the last three months and is now on hospice. I understand about the grocery store being the only outing to look forward to. I too have had to give up quilting and even knitting. I do have a daughter close, but with her commute time, she is away at work long hours, but on Saturday she sits with him for a couple of hours while I grocery shop. My only clothes shopping is online. I even buy cat food on Amazon. I have a kind neighbor who will sit with him if I need to go to the dentist or Doctor. He is someone who used to work with my husband and his father-in-law had Parkinson's, so he knows how to handle things. Don't be afraid to ask a neighbor for help now and again. People are generally kind and glad to help if asked. His doctor authorized home health care during the last three years for physical therapy, occupational therapy and speech therapy. With that comes an aide for one hour three times a week. I was able to run to the grocery store in that hour. Home Health Care is limited, but helps. You can also hire an aide for more time if needed through the home health agencies. Now DH is on hospice. A nurse comes twice a week and an aide every day to change him, give bed baths and shave him. I would recommend that you utilize all the help available. You should also contact the Division of Aging in your area and see if there are any other programs available. Even with the help, I can't get back to my quilting, but the help is appreciated. Doing everything alone is too hard. If you haven't done so already, get a trust, will, power of attorney and advance directive in place. Two weeks ago he slipped over the side of the bed and i couldn't lift him back in. I called 911 and explained the situation, that i didn't want him transported to the hospital, just lifted back in bed. There is no charge for lift assist. When they arrived, I had to show them the advance directive with DNR,. They told me otherwise they would have had to put in an IV and transport him to the hospital. Hope this helps and I wish you the very best.
  3. Patriot, you may be right. I don't know. I know with my DH with Parkinson's, we have not overused the system. We are on Medicare and not Medicaid. He has had home health care and he is now on hospice, but managing without it would have been extremely difficult to impossible. I rarely see a doctor even with no co-pay with Medicare and a supplement. In fact, I probably wait too long to see a doctor which creates its own set of problems. I don't know people who overuse the system. There are likely some, but how many, who, and why, I don't know. There are trained researchers who can compile this information. My son is a Ph.D Medical Bioinformaticist working for a hospital. His job is to research whatever the hospital needs in regards to patient care and costs. We operate on personal observation and assumed information and neither may be accurate. When we get serious about quality healthcare for all and compile provable information on which to base decisions and policy, we will be much closer to a workable solution.
  4. Is Cachexia recognized at end-of-life Parkinson's. My husband has lost a great deal of weight over the past year. His muscles have wasted away. He is totally bedridden. Though he is eating and I make sure he has good nutrition, the weight keeps coming off. He was diagnosed twenty years ago and has developed dementia and psychosis. His vital signs are good and he has no co-morbid health conditions. He is eighty years old. It is troubling to me, his caregiver, that he may die of malnutrition. Could I have done something differently?
  5. Isn't it interesting how our perspectives differ? Unfortunately our health care is directly influenced by politics. Wouldn't it be wonderful if all of those in positions of power would sit down together, pull together the best information from those who deliver healthcare, those who receive healthcare, those who research healthcare, costs, outcomes, etc.. with the ultimate goal in mind of delivering good healthcare to everyone and come up with a solution, taking politics and self interest from all sectors out of it. If this happened, most of us would accept, agree, and be happy.
  6. I too cannot get new material and I am logged in. It worked just fine until the change. I know I am logged in. I am using the same browser I have always used.
  7. My husband was diagnosed with Parkinson's disease twenty years ago. He has been under the care of excellent Movement Disorder Specialists the entire time. We had to fly a distance to see a MDS until eight years ago when a MDS moved to our area. He did not exhibit Lewy Body symptoms until he started hallucinations about six years ago. His Parkinson's symptoms have been very classic. So his classification is Parkinson's dementia, though it is caused by Lewy bodies. He must still take sinemet because of the Parkinson's. He has always taken no more medication than necessary. After seeing the video, I believe he has followed the normal course of the disease and if one has Parkinson's long enough, the Lewy body symptoms will begin.
  8. Thank you so much for posting this program. I wish I had known this information several years ago. It answers a lot of questions for me as caregiver for my husband who was diagnosed with Parkinson's twenty years ago. In the last six years he has developed all of the symptoms of Lewy body dementia. I guess technically for him it would be called Parkinson's dementia. I was not prepared for these symptoms and could have handled things better if I had known. It is of particular interest to me to know that visual perception is effected. I did take him to the ophthalmologist who told me that there was nothing organically wrong with his eyes, but gave no explanation beyond that. Now I know why my husband doesn't recognize me as his wife. I am the other one--an imposter. Why he was always wanting to go home. This was not home to him even though we have lived here for over forty years. If I had known all these things, I could have handled situations much better. Currently my husband is on hospice, totally bedridden, hallucinates, is paranoid, doesn't recognize his surroundings, has severe orthostatic hypotension, etc. The mental aspects of the disease--the Lewy body part--have been much more disabiling and difficult to deal with than the physical other than the low blood pressure issues. But for him, it is a matter of time. His vital signs are good, he has no co-morbid health ussues. He is wasting away in a bedridden situation. Waiting for death is a lonely vigil and as often happens, he will likely die of malnutrition because his body is not efficiently using food or pneumonia from a weakened condition. This is a horrible disease. Thanks again for posting this most informative program. It doesn't take away the pain and grief, but it makes the situation more understandable.
  9. You didn't include the rest of my request for evidence--no right wing sources. Only The Daily Caller and Breitbart make these allegations. There is lots of information on this group of anti fascists who use black bloc tactics (based in Oakland), certainly not directly funded by George Soros. Any indirect connection is tenuous.
  10. Give me evidence that he funds violent groups that create unrest. By evidence, I don't mean that someone said or some right wing source said so. No question he has collapsed economies, but is it for any other reason than to make money? The puppet theory is not valid without proof. The money motive is more credible. The very, very rich are often (not always such as Warren Buffet) amoral--greed is good, etc. and Machiavellian in regards to the end justifies the means in regard to money. No question, big money at the highest level allows an amoral mind to achieve almost any fantasy they desire. Except for one thing--money does not buy anyone's way out of the ultimate consequences of mortality.
  11. Of course it is money. He couldn't have power and influence without money and the systems in place facilitate the power money has.
  12. Soros did not say that confiscating property from the Jews was the happiest time of his life. He said that he was 14 years old and was just an observer and had nothing to do with it, so he had no guilt. I am not an apologist for George Soros. To me this just reaffirms that we need to take money out if politics. Whether it is the left or the right, allowing those who control the billions to control politics and events is wrong. The Trump administration is an administration of the power wealth bestows and we as a populace are at their mercy.
  13. I will turn the tables. You feel compassion for aborted fetuses but have no compassion for a child? Do children become less valuable in your eyes after they are born than before? Interesting.
  14. Excuse me, but when is a child responsible for the actions of her father? Patriot, your implication that it was okay to kill her because her father was a terrorist and traitor is so callous that I am sure you would take it back on reconsideration. If you had said that collateral damage happens in war, I might have understood, though my hope is that better planning would prevent collateral damage.