Jean Mellano

Ann Marie, is mayo offering telemedicine calls for first time patients?   Plz let us know how ur call goes.  I just did a telemedicine call with my MDS and she only does them for established patients.

Allie, isn’t the fatigue brutal?   Walking 1/4 mile will waste me for rest of day.  I try to workout in morning so I can lay down in the afternoon.   Nothing seems to help fatigue, sleep, supplements, exercise, food or meds.

Andrew thanks for sharing.  I agree with you on the benzodiazepines.   My late husband was addicted to Ativan.    Bad stuff. I believe it is only a matter of time before these drugs are put in same class (in terms of addiction ) like the opioids

hi glenn i can only hope that not all of us will experience the honeymoon effect.

Toni, you are so right.  We are all different in how the disease manifests itself.  it is a vicious cycle for me.  i need to xercise to help improve my symptoms and potentially slow progression, however one of my worst symptoms is fatigue…. go figure.   i hope u like the article, unfortunately i have no answers, only  questions and observations.

i wake up fatigued even after a good nites sleep.  i must force myself to exercise as i know how important it is to battle this beast of a disease.      next tuesday my article on exercise prior to diagnosis and potential impact will be published

robert, c/l seems to only mildly help my symptoms (mainly fatigue, bradyk, poor fine motor skills).  no constipation and i went almost 4 days of almost no or  very low protein and it did not make a difference. i usually take the c/l at least an hour before eating and take it with vitamin C (recommended for absorption)

Robert, I agree with you.  I always feel terrible after a workout and it feels like my available dopamine has been totally exhausted.   C/L seems to have only a mild effect on my symptoms.  i have tried upping my dose by one 25/100 about 30 min. before a workout and it didnt seem to help 🙁

Hi Vickie

thnx for the feedback.  I too have pain in my knee and have been using medical marijuana cream on it,  only for a few days so I have not seen a difference yet

Hi shannan

i too suffer from extreme fatigue and used to be a dancer.   For me , the fatigue can be so debilitating and no amount of sleep or rest can make me feel better.lack of motivation and apathy pl ague me and if I didn’t go on ‘autopilot’ to get to my workouts.   I can’t imagine going to work (I am retired) and taking care of a family wh…[Read more]

Thnx Stuart for the clarification.  I had one too (https://parkinsonsnewstoday.com/2018/12/18/parkinsons-disease-datscan-dopamine-transporter-levodopa-carbidopa-rotigotine-spect-imaging/  )

and was just at a meeting of the sales force  who sells DaTscan . Did u have a feeling of relief after the results that you know had a better handle on wh…[Read more]

Hi stuart

thnx for sharing. Did u get a . PETSCAN or a DaTscan?

tina, my comments imbedded in caps:

“Well I just went to my neuro appt today and of course I forgot to ask her what I really wanted to—why I’m so talkative, especially since I have declining breathing, swallowing and vocal control. Oh well. I ALWAYS WRITE A LIST OF QUESTIONS AND I DO REMEMBER TO BRING WITH ME ON MY DR VISIT, BUT I ALWAYS FOR…[Read more]

Thank you Andrew for your words of wisdom… “…one moment at a time”

thank u so much lou for your kind words and encouragement. know that i do have my bitching and whining days.  i just try not to give in to it.  somedays i am better at being strong.  one of my upcoming articles was started when i was in a bad place. However,  i had to set it aside until i felt i could put a more positive spin on the str…[Read more]

Thank you Amelie…  all the best to you as well..

Jo. Thank u for ur kind words. I will still be around responding and posting when I am good to type.  Ally is still here as is Mary Beth.

christine, not sure when i will get article out on infrared light… the jury is still out for me.. plus, i have already written 3 articles scheduled for next 3 months.

thank you for your well wishes 🙂

sharon,  we are all so different in our symptoms and what works to ease those symptoms.  Dr. Laurie Mischley (naturopathic PD doctor) compares pd to a boat with many holes and we need many plugs to prevent ship from sinking.  i wish i had some words of wisdom for you as to what to suggest, but i still struggle myself trying to find the right co…[Read more]

thank you Mary/John.  it was our goal to create a community where we could all support each other