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FightIt

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FightIt last won the day on June 12 2016

FightIt had the most liked content!

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About FightIt

  • Rank
    Newbie
  • Birthday 06/26/1961

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  • Gender
    Male
  • Location
    Colorado
  • Interests
    Skiing, Mountain Biking, Weight Lifting, Hiking, Camping, Walking, Woodworking.
  1. FightIt

    Finding Research Doctors

    Does anyone know of a good way to find doctors that are interested in sharing ideas with patients. My neurologist is very knowledgable and wants to manage my PD as a team. That is all good but the problem is that he is in a medical office that seems focused on pushing the maximum number of patients through at the maximum rate in the minimum amount of time. I'm looking for doctors that are more focused on research both for cures and also on techniques for managing PD. I think that sharing ideas with a doctor like this could benefit both sides. I'm looking for discussion with doctors interested in this not a replacement for my local neurologist.
  2. FightIt

    Groundhog Day

    Have you ever felt like if you could just go back and start the day over again it could be so much better? Kind of like the Groundhog Day movie. Maybe it's eating less protein at a certain meal, or taking your meds 10 minutes earlier or something else. I thought it would be interesting if people would share experiences like this and what they have learned to make their lives better with regards to PD. Most days have their own challenges for sure. We also all have unique ways that our bodies react to the disease but I think there are a lot of things that we have in common. Would anyone like to share your thoughts on this?
  3. FightIt

    What they may never tell you

    Very interesting post Brian. Are things still going well? How do you time the Isagenix versus your meds? I also time when I take my meds versus protein but if I get more than about 20g at one time it always causes a down time. If I stay below 20g and time it properly by eating after I have take the meds and eat soon after I feel them taking effect, I am okay.
  4. Keep fighting PinkDaisy. I was diagnosed similarly about three years ago. Exercise and experimenting with the medication schedule (with my doctor's consent) as well as keeping tabs on my protein intake have made a huge difference. I can usually minimize the down times if I am very careful and my typing is back very close to what it was before the disease during up times. It helped me a lot to keep a log of when I take the meds, when I eat, how much protein and how I feel. I started electronically on my phone but have lately enjoyed doing it in a bullet journal. Writing with a good pen is fun for some reason now. Good luck and God Bless you.
  5. FightIt

    Good morning!!

    Good Morning Everyone! This looks like an interesting thread. I'm new here but hope everyone has a great day!! Keep your dopamine levels up and your stress down. Petting a dog seems like a great way to start the day to me.
  6. FightIt

    Engineers and Scientists with PD

    It's great to see two replies already. I'm an electrical engineer. I tell other engineers that it is like the medicine is controlling the gain on an amplifier in my brain. To me it feels like it is a very sensitive amplifier. The right amount of dopamine and I feel very good and in control but slightly too much and its almost like the amplifier is distorting and clipping. The challenge that I have is that getting the right meds feels like a very complicated equation based on med dosage, protein intake, fat intake, amount of food in my stomach, meal timing, med timing, stress, hydration level, blood pressure, etc. Do you guys keep a log? At first I just kept track of when I took the medication. Then for a while I thought I could develop the best daily schedule. Now I have a schedule in mind but adjust it with day to day changes in the protein levels of my meals, stress, etc. I also feel much better and have more clarity if I keep the dosage as small as possible. I'm just curious what others have observed.
  7. FightIt

    Ongoing Issues

    I was diagnosed with PD about three years ago and have had good success in managing the disease but it takes a lot of effort. My quality of life has dramatically improved since the diagnosis but it it a constant battle. I can't just take the medication at regular intervals and expect to not have down times but with a lot of planning and effort I have significantly reduced them. My neurologist is more of a coach or counselor. He gives me general guidance and I have experimented with the med schedule and fine tuned it by keeping a detailed log. It is extremely complicated however. I feel that my log book is almost a play book for coaching myself. I have a plan for a normal day, a plan for if I sleep in, a plan if I get off track, etc. There are things that have and impact on the quality of my day. -Carbidopa/Levidopa -Protein Intake (I have to be very careful about this since it competes with getting the meds to the brain) -Low blood pressure (caused by the meds further slows down getting meds to the brain) -Sleep has a big effect -Exercise helps a lot long term but sometimes a short-term negative effect -Fat intake seems to slow down the meds -Meal size (smaller meals that digest more quickly get me ready for the next meds faster) -Meal timing (get the meds to the brain before you eat) -Stress can kill my dopamine level -Med timing (it is much easier for me to keep my dopamine level up that to get it back up after a crash) -Consistent daily schedule (I do much better on a regular sleep/wake schedule) -Music -Emotional Support from others -Stay well hydrated I am on a combination of regular Sinemet, extended release Sinemet and Azilect. The extended release is a big help at night.
  8. I'm new to the forum and was diagnosed with PD about three years ago. I have a lot of thoughts and would be interested in discussing ideas and experiences with any others but I'm curious if any other engineers or scientists have any similar thoughts about the disease and managing it. I think you can do so much better when you actively take a part in managing it.
  9. FightIt

    Exercise

    I'm new to the forum and excited to share thoughts and experiences with others. Prior to being diagnosed with PD I enjoyed exercising and I still do. It helps me both physically and emotionally. I mostly do weightlifting for strength along with the elliptical machine and walking. I love to downhill ski in the winter and have found that at times that is easier than walking. Hiking is still very enjoyable but I feel more cautious with mountain biking than before my diagnosis. I was diagnosed about 3 years ago. At first I was devastated but exercise, meds and a lot of effort has made my life much more normal but it remains a constant battle. I mix in other exercises also. I have an old mountain bike on a trainer for high RPM cycling and a nice rowing machine. I would be interested in exchanging notes with other early onset people with regard to the effect of exercise on managing the disease.
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