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Showing most liked content on 08/24/2017 in all areas

  1. 3 points
    In my opinion, the key is to keep moving. For example, I don't like the idea of walking 30 minutes a day, if the rest of the day is spent sitting on the couch. I don't like the idea of an hour of cardio, when a person has a Handicap sticker and parks as close to the store as possible. I think that battling PD requires a lifestyle change that means the patient will take every available opportunity to move throughout the day. When I go to the store, I park as far from the store as possible. I will usually walk a lap or two around the big box store before I begin shopping (each lap around Walmart is almost 1,000 steps. I own a business and have a massive number of bills to pay each month. When I pay bills, I pay one bill at a time and then take each receipt to the basement to be filed. I make a trip around the basement and do one exercise with each trip. I often have over 100 flights of steps a day. I'm not saying don't do organized exercise. Quite the contrary, I think participating in organized PD exercise is very valuable. What I'm saying is that in addition to whatever PD exercise program(s) you do, you also need to move all day long! Move it or lose it!
  2. 2 points
    Great advice P. I wish everyone would follow this and not expect a magic pill to do all the work for you.
  3. 2 points
    - Sorry that your mom is now diagnosed w/ PD, but it seems like you'll be a good support for her. I, too, was started on pramipexole (currently taking the extended release formula once a day @ 3 mg. level), and I also used rasagaline (1mg. once a day), but, now that I've hit the doughnut hole for Medicare drugs, it's too expensive, even for the generic, so I'm quitting that. A friend, who is a neurologist, (not the neurologist I use) feels that it's worthless anyway. My neurologist says that there was debate about whether it had some neuroprotective effect, but it's OK to stop, and, if the symptoms get worse w/o it, he'll either increase the dose of pramipexole or start some levadopa. I exercise really vigorously every day except for one day of rest - an hour every morning - 3 days a week on the elliptical for 30 min. + floor exercises, then 3 days a week on fitness strength machines + nu-step + 10 min. of elliptical. It's all hard enough cardio/high intensity to get sweaty, make it tricky to carry on a conversation, etc. - but, my PD really hasn't progressed much in the 5 yrs. since diagnosis @ age 65 or so - and my neurologist feels that the exercise is why. (I used to run 3 miles/day, but, living in FL heat/humidity, I can no longer do it, and had trouble w/ my feet on the treadmill, so it's the elliptical now.) His philosophy is to treat exercise like a drug, & don't skip a dose. I wish you & your mom well - tell her to just keep moving!
  4. 1 point
    Thanks so much LAD, these inspirational stories are what's going to keep me going!!! And my family of course, I can't afford to slow down! I'm definitely going to look into the PWR program, I could use a new exercise routine....thanks!!! Everyone have a great day!
  5. 1 point
    Same here LAD and to everybody..having down days so cheers and take care guys.. Em
  6. 1 point
    Educate yourself. Reach out to the ask the pharmacist forum. Exercise is key! There's lots of PD specific options. I do a program called PWR! (www.pwr4life.org) & take dance lessons. Find something she likes! Good luck LAD
  7. 1 point
    I am a mom of 3 boys, I was diagnosed 3 years ago. It is life changing but it's not going to define you. You choose how to respond to it. With young boys I'm sure you are always on the run. Start exercising....there are lots of different PD specific options. Get your kids involved-let them do it with you. Exercise is the one thing EVERYONE can agree is helpful. I do a program called PWR! (Www.pwr4life.org)and my husband and I take dance lessons. Find something you like! Life will be different but it can still be great. You will keep fighting because you're a mom and that's what we do! LAD
  8. 1 point
    I just want to comment on Azilect (Rasagiline). I was diagnosed in 2014 and have been talking nothing but Azilect. My Neurologist (MDS) on June 27 told me my progression is slow/delayed by daily exercise routines and Azilect. I shake my head when I read Azilect does nothing. Tell that to my symptoms or lack of!! D
  9. 1 point
    Welcome! Yes...it is extremely likely that you will be an active participant in your kids' activities as they grow up. Most young-onset PD patients progress relatively slowly and remain active for a long time. No...they will not likely be embarrassed about your PD as your tremors get worse. It will be something they see every day while growing up and will most likely not pay much attention to it. As far as work is concerned, it's highly variable depending on how the disease affects you. With respect to the Sinemet and Mirapex, I had exactly the opposite experience. Mirapex was horrible and did little to help. Sinemet has been great for 6 years now. Hope this helps. Kevin
  10. 1 point
    Hi, Momof4boys. Welcome to our Parkie family. Is the neurologist you are seeing an "MDS" (Movement Disorders Specialist)? It's very important. It's also a real plus if the MDS you see is with a university-based teaching and research hospital. We have found that if you have both of the above two things, you will be in much better stead for your care. They are most likely to be up on the latest research, care, and treatment. You'll find so many good people here who will be able to give you good advice and information from their experiences. Linda
  11. 1 point
    Well said Adam! Momof4boys-I will reach out to you when I have better access to a computer! For now, welcome to the forum and you will be ok!! LAD
  12. 1 point
    Really? We have PD and must take levadopa or whatever for the rest of our lives, and we're gonna worry about a nicotine patch being addictive? Hey, if it works, call me an "addict"
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