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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
    That is great Dianne, I'm glad that they realize your potential for helping others, Lori, I'm glad your son is fine, It does make one happy to see the world gather together and stare down terror. Stand tall and strong ps. Anyone spoke to Linda of late??
  5. 1 point
    YES I have been having trouble catching my breath for a while now. Part of my problem is that i dont sleep very well so i am always yawning. Nobody has been able to tell me what its from. My educated guess is that since dopamine is needed for any ,movement that the diaphragm isnt moving the way it should because of a decrease in dopamine. My neurologist had me see my pcp to make sure there was no cardiac issues and there wasn't . She really did say much about it. MY PCP gave me a RX for a puffer and that helps I have been doing breathing exercises and have been using a respiratory exercise thing. I got it at www.voiceaerobicsdvd.com I think it helps thats just my opinion . It was only 30 so in said what the heck. do you know if there is anything we can do about it
  6. 1 point
    Cereus and LAD thank you for this important information. I am now understanding how important support is for this illness. Your responses have been very helpful. I've now been able to take a breather from my panic and step back. I'm realizing that I need to manage this entire process from now on in a way that works for us. And that is going to be moving very slowly and deliberately when it comes to any decision particularly about medication. I am not going to let doctors throw our lives into dysfunction without taking the all of the necessary context into account. What a difference it would have made if we had taken the Aware in Care Kit's suggestion to include a neurologist in our surgical planning.
  7. 1 point
    @Calliope, your husband is lucky to have you as his advocate. You have demonstrated that you are not helpless, and that you have the good sense to double-check when in doubt. Dianne has given you great advice about the Aware in Care kit. You may have already researched these other sites, but in case you haven't, I'd recommend The Davis Phinney Foundation (https://www.davisphinneyfoundation.org). You may especially want to order or download their free manual called Every Victory Counts (https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/). The Michael J. Fox Foundation (https://www.michaeljfox.org). Both of those sites, in addition to this one, have a wealth of information. I also enjoy the social networking site for people with PD and their care partners called My Parkinson's Team (https://www.myparkinsonsteam.com). Hope this helps.
  8. 1 point
    Beau's Mom, thank you so much!!!!
  9. 1 point
    The life expectancy of CBD is much less, as afroney mentioned. If I had CBD, I wouldn’t be a member for very long, thus my happiness at being in the club for longer than I might have been. Am I happy having PD? No. Am I happy it’s not something worse? Heck, yes!
  10. 1 point
  11. 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!
  12. 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.
  13. 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.
  14. 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).
  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
    Hey Papa57, im so sorry you’re suffering - which is what I call pain and worry mixed together in a seemingly unavoidable, inescapable muck. theres no easy answer to your situation and it’s a question that faces us all....when is it time to move from the past to a new future and do we have the energy to make the best of things. It can be daunting to make that change, especially if you look past or downplay what you have gained in life and focus mostly on what you’ve lost. ...I used to be this, could do that, had those things..now I don’t, what will I do, etc... it takes courage to live and thrive, and even more courage to live gracefully as you get older and sick. But it also takes the wisdom of living in this earth for six decades...and you’ve got that..so go and explore, and learn, and teach and encourage. you’ve also got friends and support on this forum and you can always make more if you get out and find what makes you happy now. My therapist recently asked me what did I want to be when I grew up..and what kind of job did I want to spend my last working years doing. I’m thinking about that...I wanted to be a spy...or a scientist, or an orchestra conductor. -S
  20. 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 .
  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
    Dear Ollie, I am a young onset (at age 34) who will be “celebrating” 30 years of diagnosis next April. I walked the same path and can understand how you feel. I took medication (L dopa) right after diagnosis, as I preferred to enjoy my younger years to the fullest and indeed I had what is called a “honeymoon period” that lasted more or less 4 years. I then got pregnant and pregnancy did bring about a slight worsening of my symptoms. My only child has always known me as a “shaking mum” and this has never been a problem for him. As a matter of fact, he used to sit on his left hand, just the way I did, as I was trying to master my left shaky hand. I spoke with him about my disease when he was 7, as I was going to have deep brain surgery (DBS). He did not show any bad reaction, as he knew already I was not well. I think my medical condition contributed to his warm and outgoing personality, showing great consideration for other people’s predicament . He has a very caring nature and is always ready to help others. Although he is an only child, he has never shown any type of selfishness nor is he completely self obsessed. DBS put an end to my shaking altogether, so I am no longer a “shaking mum’, but as years went by, I developed other symptoms. Now my mobility is limited and my face has a mask-like appearance but that does not mean we don’t laugh together and he knows my stern looks don't mean I am upset or miserable. I also have a husband who is really devoted and caring. I consider myself lucky and cannot thank him enough for being at my side always. As far as letting people know at work, I can’t really help as I live in France and the situation is very different in Europe from what it is in the States. My employer knew from the time I was hired of my medical condition and accepted the situation. I was able to work until I reached 55. I then decided to retire (early) as I did not want to perform poorly. My medical condition did prevent me from certain job assignments (I was a translator in a European Union organization) like ministerial meetings, but all in all I had a very rewarding career despite Parkinson’s. I think I covered all questions you mentioned. Take very good care and give a big hug from me to your little girl (Three is a great age!). Regards mireille
  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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