bob-hodgson
Forum Replies Created
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I get a toe cramp on the left foot for 15 minutes in the morning and then no cramping the remainder of the day. The most bothersome side affect is some dyskinesia in my legs. I call it my “stroke legs”. Anywhere from 30 minutes to several hours during the day. My right leg wants to go sideways.
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Check out this latest research from UCSD.
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Ditto on most of the previous posts. I was diagnosed a little over five years ago. I waited 18 months after diagnosis to start on a low dosage of carbidopa-levodopa. Actually I wish I hadn’t waited so long. I have modified my diet to limit carbs and sugars, I take around 24 different supplements and I take mucuna pruriens with my medication. All of that in my opinion has slowed down the progression of the disease. I have found that the best form of treatment has been running (you can substitute any form of high intensity exercise). For some reason I didn’t start running until three years into this journey. I was always very active pre-diagnosis so I was ready to exercise. I constantly get comments from friends that they can’t believe how well I’m doing.
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What impresses me the most is the results from regular exercise of which you have all have experienced, the slowing down or even reversing the symptoms from PD. That’s incredible! Keep up the good work!
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I was extremely active pre-diagnosis and have tried to remain so after I was diagnosed in June 2014. I have found that muscle memory has been beneficial in continuing to exercise. For example, I found that it was easier to run/jog then to walk. Consequently I am running 3-4 days per week and on non running days I either walk or use an elliptical machine. This exercise routine has significantly slowed down the progression of the disease for me. In fact this year I have had an improvement in my symptoms such that I get comments all the time from friends and family that they notice an improvement.
The only activity that I no longer do is surfing and snowboarding. My hope is that someday I maybe able to do those activities again.
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My neurologist started me on Xadago 2 weeks ago. I’m going to give it a 30 day try before I decide to continue or not. So far I’ve noticed that my tremors are down but it seems that other non motor symptoms are “worse/different”. I noticed that I’m clenching my jaw which I did not do before and that even though my hands show no tremors but my legs move more. I was hoping to minimize off time but have not yet noticed any change there, yet. I will keep you posted in a few weeks.
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My neurologist suggested that I DO NOT take vitamin B6.
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My standard answer is “great” because if I’m not it lifts my spirits. Truth be told if I really think about all I have to be grateful for I should change my response to “fantastic!”. Have a great day!
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Perhaps someone can verify this but I was told that the extreme heat impacts the effectiveness of the carbidopa-levodopa. I notice that in high heat that I seem to need more medication. So from that perspective my symptoms are worse in higher heat levels.
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I can’t say that I have fatigue as a symptom other than from the levodopa-carbadopa which makes me sleepy.
My motivation comes from the desire to get better and to keeping a routine. I still work so I have a set work out routine every day.
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I have been very active for most of my life and I believe that has helped me with slowing down the progression of my PD. I have stopped surfing and snowboarding but have continued with my other exercises which consist of running, elliptical and weight training. It is easier for me to run than walk which I attribute to muscle memory.
It’s a life changing diagnosis but don’t let it change your life!
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I’ve had this issue but never linked it to PD. I figured that this problem was a technique issue such that I watched other people to see their “technique” to figure out what I needed to change.
To answer your question I prefer to figure it out on my own but that’s because I’m super stubborn.
Thanks for the insight.
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I have been blessed to have been working with two of the kindest and compassionate neurologists over the past four years. My current neurologist is the one who suggested that I run for exercise. I would give out their names but I’m not sure if that violates any forum rules.
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My earliest symptoms were an occasional left thumb tremor. My primary care doctor told me to cut back on the amount of coffee I drink! Love the compassionate health care system. Four years or so later I noticed the tremors were more frequent and had traveled to my right side this was combined with smaller handwriting and “heavy legs”. I decided to see a neurologist who specialized in movement disorders who confirmed my suspicions. His confirmation was I have good and bad news, the good news is what you have won’t kill you and the bad news is you have Parkinson’s. First and last visit to this doctor.
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My philosophy is to live a generally healthy active life style, diet, exercise, supplements, etc. My hope is that something that I do will minimize my symptoms. To date the most dramatic improvements occurred after I started running 4-5 times per week. I can’t seem to find much research on the impact of running in reducing PD symptoms.
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Most of my mercury fillings were replaced when I had dental crowns installed to repair a crack in my tooth. I have one more crown needed and one replacement filling to go.
I’m not adverse to treatment from the dentist and have not found the process any different then having a normal filling. The cost for a porcelain filling is slightly more expensive then a standard amalgam filling.
Fortunately I do so many things to help recover from this disease that its difficult to determine a direct correlation to symptomatic improvements.
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I have been slowly replacing the mercury fillings and I only have two more to replace. VERY IMPORTANT that you use a dentist that knows how to safely remove the mercury so you don’t ingest or breathe the mercury during extraction.
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I have been slowly replacing the mercury fillings and I only have two more to replace. VERY IMPORTANT that you use a dentist that knows how to safely remove the mercury so you don’t ingest or breathe the mercury during extraction.
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I have been a regular exerciser for most of my life so post diagnosis I have tried to keep my schedule the same. I consider exercise as part of my recovery process. When I lack motivation I remind myself that my exercise is my “medicine” which makes me feel better.
I have a movement disorder which requires me to move!!
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I ran in a 5K for Summit for Stem Cell research last fall. It was more like a jog and walk. Since then I have increased my running activities and anticipate participating in another 5K.
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What I loved most was finding an activity that I can participate in. I enjoy racket sports but having PD (7 years) has made me limit the activities that I enjoy. Sometimes I just need to silence the committee in my head and just go for it.