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  1. 3 points
    🙄 Can we keep partisan politics out of this place?? Anyone thinking what happens in D.C. in a few weeks, or in 2020, or any other time, has more than a tertiary effect on their lives needs to reexamine their perspective. I've thrived under D and R administrations, and I've had hard times under D and R administrations. My happiness and prosperity is not dependant on the political climate.
  2. 2 points
    Usually it is advised that you start sinemet when symptoms cause a diminished quality of life. Personally, I would wait as long as possible and try other strategies for controlling symptoms (especially exercise). Everyone is different so work with your doctor when choosing the best time to start. Good luck, Gardener
  3. 2 points
    Agreed. Keep politics out of it ......unless you're lobbying for $ for PD research. Part of this is my need to muscle through it, get my head straight, and part of that is the timing of the meds. My exercise regiment is not the best lately either. I also need to learn that I'm not in control. I can only manage what I can at the moment. To find grace as SuperdeCooper stated. What I believe I'm personally learning in all of this is this all takes courage. Some time ago, shortly after the initial diagnosis (3 1/2 yrs ago) my DW and my MDS both told me.......this is ultimately your life.....you need to decide what to take or not take for meds, how to move forward, etc. I also need to lighten up.
  4. 1 point
    Beau's Mom, thank you so much!!!!
  5. 1 point
    Calliope, please call the Helpline and ask for the Aware in Care Kit. It is free. It contains valuable information for physicians, anesthesiologists, and nursing staff about which meds can and cannot be used when a patient has PD. It has been a saving grace for me for both outpatient procedures and inpatient hospitalizations. You will have the weight of the entire Parkinson Foundation standing with you next time you have to deal with professionals who know nothing about PD. Blessings as you learn how to be the best possible advocate for your husband. Dianne
  6. 1 point
    Divi, It is optimal to take Sinemet before symptoms start. It can be difficult to determine when this will happen but the best way is to keep a journal. To start this process you should take your morning dose and write it down in a journal. Also remember that Sinemet is best absorbed on an empty stomach, which is 1 hour before a meal or 2 hours after a meal. When you start to feel off you should take your next dose and write down the time when you took it. You should do the same for the remaining doses of medication. You will then use the times you wrote down to dose your next days tablets. The next day you start with your morning medication as you had previously done. You then want to look and see the time when your symptoms started to the previous day and try to take today's dose about 30 minutes before. For example, if you took your morning Sinemet at 8:00am and your symptoms started at 12:30pm, then you want to take your next dose at Noon. You should also keep track of the time you take the Sinemet and the time of any off periods you may have. This way you can use these times as a guide for the following days doses. It may seem a little hectic but after 5-7 days you should be close to controlling your off times. Many people have noticed that their off times occur at around the same times every day. I hope this helps and please keep me posted.
  7. 1 point
  8. 1 point
    Although I don't have the problem of falling in the shower, and I do use a shower chair at least part of the time, I do want to say I've found the loofah type bath mats made by Mayshine on Amazon to be very helpful. They are wonderful, cushy, very stable, feel great on my feet. Makes all the difference for me!
  9. 1 point
    I wouldn't take ANY medication until it is absolutely needed. I waited 4 years before starting Sinemet and will fight hard to keep the dosage as low as possible. I think doctors that routinely prescribe Sinemet to newly diagnosed PD patients are doing them a GREAT disservice.
  10. 1 point
    I noted there is a link for religion. Thank everyone of you for keeping that out of these discussions as well. IMHO religion and politics should be taboo when dealing with the general population of questions.
  11. 1 point
    Who said anything about censoring? Besides, part of being an adult is understanding that some topics are better discussed elsewhere. Like in a thread dedicated to the politics of PD (which is easily ingnored by those only wanting to help someone with a PD issue). Or on a different forum dedicated to discussing health care related political topics. FWIW, I'd have responded similarly if PatriotM had posted something similarly political, even though I generally agree with him on politics. Anyway, let's get back to papa57, and helping him with his current struggles.
  12. 1 point
    This "forum" is uncensored and unmoderated. Every post is equal, no matter what "partisan" content it has. If someone is overwhelmed with a desire to censor, start at home (or move to a moderated forum).
  13. 1 point
    Dianne, I wish I could have set across the table with you with a cup of tea and had a conversation with you when I was diagnosed almost 5 years ago. I struggled with my diagnosis until I came to terms with it, but it took a good minute. Thank you for your kind, assuring words to Barbara B. I always appreciate your posts.
  14. 1 point
    John Hoefen, i completely agree with Stump. Please check your partisan politics at the door. It just gets everybody riled up and taking sides. Most of us have Parkinson’s or support someone wit it. Papa57, I feel your pain and concern. I’m a couple of years behind you and am struggling to figure out my future and the love of my life. Keep us posted as you figure stuff out because it is useful to everyone. Cheers. Dave FYI John H.: We are not a democracy but rather a representative democracy, which is a form of democracy. A direct democracy makes laws (and other government decisions) predominantly by majority vote. Some lawmaking is done this way, on the state and local levels, but it’s only a tiny fraction of all lawmaking.
  15. 1 point
    Yeah, jb. How did you know I've been hiding in the green bottle.? Stuff has been happening. Hard to go up staiYors even if we only have three. And then when we took the cats down for a nail trim we discovered fleas. Dealing with that. Someone told us we should have put the flea stuff on once a month. I'm exhausted. The cats knew what they had in the beginning. They had been jumping couch to sofa to table. Then meow. Then look at us like, "It's your turn to help!" They look all over the furniture and floor before jumping. I think I got more fleas on me then they did on them. Then my sister reminded me that I have not done a blog post since April. Congrats LAD. And Wow Dianne. I guess I should continue with the fleas clearing out. I'll give them their notice. My DH said I should stop feeding them. Fleas and mosquito's like me. Tom, your pictures were cool. More later. m
  16. 1 point
    Thanks all for your supportive comments. I try my best to be supportive of the group forum.......thanks for reciprocating!
  17. 1 point
    I agree with LAD. You do get to choose how you react to PD. If you sit at home, you'll only get worse - and quickly. My MDS always says 'live your life". He's a big believer in only taking the medication that you need and to just continue with life as normal. I am not a believer in the idea that a person with PD should take it easy and reduce stress. Reducing stress is another way of saying that you're not living life. Life is full of stress and if you have no stress, you have given up a lot of your life. It's like a war, there is only flak when you're over the target I've only been diagnosed for a little over 5 years, so I'm not the expert on all phases of PD. However, I do know that with any disease, you've got to stay active and keep living!
  18. 1 point
    Rappleman, I actually had to pull up the law in order to believe it. I will say, first and foremost, I believe this should be a volunteer situation and not a mandate. I could see how it could be a research opportunity, I also see it as an invasion of privacy. I would guess that most PD patients would volunteer this information with the hopes to advance research and possible development of new physical and medication therapy. I know that many PD patients would try almost anything to better their situation. I did notice that in the law it stated that this is a state law which would avoid the Federal law of HIPPA. It has always been taught and acknowledged that the most stringent law, Federal or State, would be respected as the rule. This is the rule when it comes to medical marijuana. The State may say it is legal, but it is still illegal on the Federal level. In this case the Federal law of patient privacy should override the State law. Also, since this is a state law, there should be no need for a Federal indentifier such as the Social Security number. It can also look like lobbiest for drug companies, insurance companies, and agents for Medicare might be involved. This may result in insurance companies denying claims due to preexisting condition. The last blatant issue I see is that some PD medication can be used for other ailments. For example, Mirapex, Requip, and Sinemet can also be used for Restless Leg Syndrome. This would then force the Pharmacist to report this without a diagnosis of PD. I wanted to reply to this as soon as I read it due to my beliefs as a Pharmacist and PD patient. As I investigate this further, I may post more of my beliefs. I hope this helps and please keep me posted.
  19. 1 point
    Good morning all Parky's from Parks Avenue to Parksylvania and all the little parks places in between such as Parkseatlleburg. The fall here, rather the autumn here has been going on whether or not I get my fall jobs done or not. All things absolutely always get done one way or another. I have most of the stuff out of the garden except for a few beets. Jack Frost I see came last night and picked the last of the tomatoes though. I should of had them picked and in the garage. I hope that everyone has had a good weekend. I hope anyone involved in the hurricanes is ok and getting back to more normal. best wishes to all...jb .
  20. 1 point
    That was nicely written Miss Lori. Thanks for the good read. Jb .
  21. 1 point
    Oh, my . . . . glad he is okay. Makes me think we may need to make the decision about moving or staying put and remodeling to "age-in-place" more safely sooner rather than later.
  22. 1 point
    My husband is oblivious to his mental changes for the most part. When discussing buying a new car he blurted out that he couldn't handle the negotiations and that surprised me. Sometimes l ask him about his memory deficits and he is unaware of them.
  23. 1 point
    Have your MDS send him for Neurophsyicological Assesment Six to Eight hours of written, visual, and spoken testing. I was concerned it was LDB as some words I way having a hard time with. Classic was my wife asking "What Salad Dressing would you like". I mentally pictured that she wanted me to get a head of lettuce and put a shirt on it! I really didn't grasp "salad dressing". About a half hour later it was DOH! what was I thinking. During the testing, picture of a pelican came up. I kept thinking, "loves to sit on a pier", "loves Fish", the company that makes a Cell Phone Holder, did I mention "Fish". I was frustrated as I knew it was a bird who lived by the sea, and ate fish". 15 minutes later PELICAN was blurting out my mouth! Oh, I couldn't remember the Govenor of the State. Ditto for Joe Biden, both came to me during the day. So you can understand my LBD was a huge concern. The Neurophsyicological assesment is used to address that concern. Biggest issue was a two month wait to be seen, and a month to get results typed up. MDS is the person to start with as they will help with recommended one that writes in plain English. Thankfully I passed so I qualified for the DBS, but I think we all have that fear.
  24. 1 point
    To the best of my knowledge, probiotics do not have the ability to affect an existing H pylori infection. It is instead treated with antibiotics and an antacid medication, for a fairly short period of time -- one to two weeks. I'm sure there are natural remedies for treatment, but I would not recommend trying them except under the supervision of a licensed therapist with experience in gastric ulcers.
  25. 1 point
    H pylori Eradication Important in Parkinson's Disease Megan Brooks Jun 27, 2013 Drug & Reference Information Helicobacter Pylori Infection Peptic Ulcer Disease Upper Gastrointestinal Bleeding SYDNEY, Australia — Patients with Parkinson's disease (PD) and Helicobacter pylori infection may respond better to levodopa and see their symptoms ease once the infection is eradicated, new research confirms. "Screening and eradication of H pylori should be recommended in all PD patients, particularly those with erratic response to levodopa," the study team concludes. "I think it would be a pity to miss this infection in our patients and I believe we should incorporate this in our clinical practice, as it is quite inexpensive to diagnose and treat," Norlinah Mohamed Ibrahim, MD, from the Neurology Unit, UKM Medical Centre, Kuala Lumpur, Malaysia, told Medscape Medical News. She presented the study results during a late-breaker poster session at the Movement Disorder Society (MDS) 17th International Congress of Parkinson's Disease and Movement Disorders. H pylori Prevalent in PD Prior studies have demonstrated that H pylori infection is prevalent in patients with PD, it affects levodopa absorption and its eradication can improve clinical response to levodopa. The new study from Malaysia largely confirms these findings. Among 82 patients with idiopathic PD who were receiving levodopa therapy, 27 (32.9%) had a positive result on a 13C-urea breath test. Compared with H pylori–negative patients, H pylori–positive patients had significantly poorer scores on the total Unified Parkinson's Disease Rating Scale (UPDRS) (P = .005) and the 29-item Parkinson's Disease Questionnaire (PDQ39) (P < .0001). Twelve weeks after the infection was successfully eradicated with antibiotic therapy, levodopa "onset" time significantly decreased (P = .023) and "on" time significantly improved (P = .023), the researchers say. The total UPDRS scores (P < .0001) and scores for parts II (P < .0001), III (P = .001), and IV (P < .009) were also significantly better 12 weeks after eradication, as were total PDQ39 scores (P < .0001) and the subdomains of mobility (P = .001), activities of daily living (P < .0001), stigma (P = .047), and cognition (P = .01). "Robust" Improvement With Eradication "It was our hypothesis that H pylori impairs the absorption of levodopa and its eradication would in fact improve clinical symptoms. And indeed, we were very impressed by the robust improvement in all the parameters, as early as 6 weeks of eradication and was sustained at least for 3 months," Dr. Mohamed Ibrahim told Medscape Medical News. "This indicates that eradication of H pylori affects treatment of patients with PD, especially those with erratic response to levodopa. As PD patients are more predisposed to having this infection, eradication of the infection will not only help in their clinical outcome but also reduces their incidence of gastric and duodenal ulcers, and reduced risk of gastric malignancies," the lead investigator added. Dr. Mohamed Ibrahim said she is collaborating with a colleague on a "more robust" study mainly addressing the clinical effects of H pylori eradication in patients with PD, but also the effects on other measures, such as inflammation. The authors have disclosed no relevant financial relationships. Movement Disorder Society (MDS) 17th International Congress of Parkinson's Disease and Movement Disorders. Abstract LBA-32. Presented June 18, 2013. http://www.medscape.com/viewarticle/806999
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