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Lou Hevly

Home Members Lou Hevly
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@louhevly

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  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Neurologist and treatment style in the forum Living ​With​ ​Parkinson's Disease 2 years, 9 months ago

    I’m fortunate in that both my GP and neurologist encourage me to find out as much as I can about the disease and welcome any questions I may have. One example is that I was having trouble with Restless Legs Syndrome and, from what I had read online, it seemed that pramipexol (Mirapexin) might be helpful. I emailed this request to my neurologist…[Read more]

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    Lou Hevly replied to the topic Sinemet dosage in the forum Parkinson's Disease Medications 2 years, 9 months ago

    The usual dosage is 3 x daily; my neurologist said that this is to keep the level of dopamine in the blood as constant as possible.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Azilect/rasagaline; have you tried it? in the forum Parkinson's Disease Medications 2 years, 9 months ago

    I take 1mg Azilect daily and am not sure if it does any good or not. I’d have to stop taking it to know. I’m hoping it will work to keep the amount of levodopa I need at a low level

    The tests that purportedly evaluate its neuro-protective qualities depend on the Unified Parkinson’s Disease Rating Scale (UPDRS), which is a self-reporting survey…[Read more]

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    Lou Hevly replied to the topic How does your emotional state affect your symptoms? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Hi Andrew,
    A couple days ago a friend recomended 3mg melatonin half an hour before bedtime, then 1 mg Noctamid (Lormetazepam) just before bed. I’ve only tried it once, but I got a good night’s sleep. I don’t want to make it a habit, but the next time a try it I’ll post the results.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How does your emotional state affect your symptoms? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Hi Barbara:
    RLS is my main symptom and I have found Mirapexin (pramipexole) to be effective, 1 0.26mg tablet per day, though a side effect is mild edema. I’m also taking sinemet 25/100 3 x daily and 1mg Azilecte 1mg daily, but I think the Mirapexin is what gives the most relief. Magnesium also seemed to help but it gives me the runs. This is true…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How does your emotional state affect your symptoms? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Thanks Jean, I could use them!

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Sinemet dosage in the forum Parkinson's Disease Medications 2 years, 10 months ago

    I have been on sinemet for about 3 years, 25/100 3 tabs per day. No negative side effects.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How does your emotional state affect your symptoms? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Fortuantely I’m happily married and my job consists of climbing up one flight of stairs to my office where very friendly Catalan people come to practice their English. In other words, no stress. However, either the PD itself, or the meds I’m taking or simply my own personal genetic makeup have lately been causing me serious insomnia, and my RLS…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic CAM Care PD Questionnaire in the forum Parkinson’s Research News 2 years, 10 months ago

    Hi again Jean,

    Maybe someone’s monitoring this forum; I’ve just received an email from a Neurology Research Assistant at Bastyr University thanking me for my participation in the CAM Care in PD survey and inviting me to do the 24-hour food recall survey, which I just took.

  • Profile picture of Lou Hevly

    Lou Hevly started the topic CAM Care PD Questionnaire in the forum Parkinson’s Research News 2 years, 10 months ago

    Hello everyone:

    If anyone is able to speak with Dr. Laurie Mischley, ask her about the status of the CAM Care PD Questionnaire here:

    https://redcap.bastyr.edu/redcap/surveys/?s=JA43fy#_ga=2.93173981.1310629375.1570811238-null

    It’s a great initiative, but I spent an hour filling out the form and was supposed to have received an email confirming…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How do you answer, "How are you?" in the forum Living ​With​ ​Parkinson's Disease 2 years, 10 months ago

    When anyone tells me I’m “looking good” I respond, “That’s cause I’ve got my clothes on”.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic What was your first symptom? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Hi Jean, I’m doing all right, and I sure hope you can say the same. I had polymyalgia for two years in 2011-2012 and still have a little neck and shoulder stiffness. I thought these were hangovers from the PMR, but maybe they’re another Parkinson contribution to my “well-being”.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic What was your first symptom? in the forum Parkinson's Disease Symptoms 2 years, 10 months ago

    Anosmie (lack of sense of smell), 12 years ago. Mild kinetic tremor (tremor when lifting or manipulating something) 6 years ago.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic When did you disclose your PD at work? in the forum Living ​With​ ​Parkinson's Disease 2 years, 10 months ago

    I mention it because I sometimes get a spaced out look during class and I didn’t want my students thinking I was getting bored!

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Do you talk about death and dying? in the forum Living ​With​ ​Parkinson's Disease 2 years, 10 months ago

    Yes, but I don’t connect PD with it yet. It’s more like philosophic speculation, especially the question of whether anything we do has any bearing on what, if anything, comes next.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How do you answer, "How are you?" in the forum Living ​With​ ​Parkinson's Disease 2 years, 10 months ago

    Can’t complain, or I’m fine.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How often do you see your neurologist? in the forum Living ​With​ ​Parkinson's Disease 2 years, 10 months ago

    I see my neurologist twice a year. But at the moment my symptoms are stable, so there really isn’t much reason to see him. Also, once when I wanted to change my meds, I carefully explained why in an email and he made the prescription change for me.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Do you drool? in the forum Parkinson's Disease Symptoms 2 years, 11 months ago

    😉
    I was taught never to talk with my mouth full, but if I want to get a word in edgewise in this country (Catalonia) I have to grab any opportunity. So I used to be pretty good at it, but now with PD I’ve had to give it up.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Do you drool? in the forum Parkinson's Disease Symptoms 2 years, 11 months ago

    Yes, I drool. And my mouth hangs open when I observe anything interesting for very long.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Why did you join this forum? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years ago

    Hi Avril, what you’re experiencing with the effectiveness of Parkinson medications is normal. Every case is different and even the best doctors can only prescribe for patients on a trial and error basis.

    Sinemet is the “gold standard” of Parkinson’s treatment. The normal beginning dosage is a tablet (25/100) 3 times a day. What are the main…[Read more]

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      replied 3 years ago

      lou, you are too kind, thank you for your encouraging words..

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