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    • #20778
      Mary Beth Skylis
      Moderator

      Being diagnosed with Parkinson’s disease often happens in a flurry. It’s fairly easy to get lost in the emotions and information that’s being thrown at you. As we learn about the disease, we may discover helpful tips and tricks that can provide a better sense of well-being. What do you wish you’d learned earlier? Is there anything you’d do differently?

    • #21122
      Holly Jacobs
      Participant

      I still wish there was more face to face support groups for younger onset Parkinson’s people. Because of this I have started my own support group…which is an immense undertaking! However, I find that I am still the youngest and have had PD the longest out of all of the group members. But I still persevere for myself and the group. But what I wish I had, “Listened,” to more rather than, “Learned,” is the importance of ALL the forms of EXCERCISE and how truly important it is to people with PD. I have had PD for a little more than 7 years and I am 50 years old and I have only really started exercising in the past two years and, it DOES make a difference. So, if you are newly diagnosed, please take exercising seriously…it truly does help you feel better and does so much for your balance, cognition, core, strength and endurance. Best regards, Holly.

    • #21124
      WTW
      Participant

      <p style=”text-align: left;”>Am 49 was diagnosed with PD about three years ago ignored signs like twitching thumb on left and trouble dragging my left leg a bit.  I am a workout guy and have been prior to being diagnosed.   The biggest reason I went to the neurologist was to get a better understanding why dumbbells in my left arm were marketable weaker than my right arm.   That being said working out staying active has an affect on my entire body compared to when I don’t workout(some workout days my body is as stiff as to when I don’t).  Would like to learn what is the optimal balance of being physically active and being too active that it’s is detrimental? It seems that I try to workout the symptoms away, which sounds silly. Best Todd</p>

      • #21130
        twok
        Participant

        YOU ARE AMAZING!

        • #21166
          jeanne hofvendah
          Participant

          I’m just starting this journey so I’m looking at what you guys wish you learned earlier. To Todd, I read that people who get Parkinson’s are a third less active than the general population. I feel frustrated because I was always very active and my life was exercise. I also did yoga four times a week and some years of my life had done weights in the gym. And after the diagnosis it was hard to do anything because of severe fatigue. I recently had to quit working because of the weakness and fatigue and now with more time I’m going to focus on trying to get exercise again. The other problem I have is such severe nausea that I really only eat one meals worth of food in a day generally. I’ve lost the 10 or 12 lb that I gained during covid and I’m wondering what will happen because I’m a pretty thin person. But your story inspired me because I was wondering if the exercise wouldn’t make as huge a difference on me because I was already fit and active. So you let me know that yes will be helpful for me also. Yesterday I went to my first yoga class, though it was really more of a stretching class with not much that was difficult. I had to go to bed an hour after, like I usually do after any movement, but I was really happy that I was able to finish the class. I’d love to know if you have to fight through the fatigue to exercise or if you don’t have much fatigue. Mine is pretty severe. Thanks for helping me feel a little more hopeful.

           

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