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Lou Hevly

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@louhevly

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    Lou Hevly replied to the topic Did you notice changes to your symptoms after getting vaccinated? in the forum Coronavirus (COVID-19) and Parkinson’s 8 months, 3 weeks ago

    Unfortunately one Pfizer shot caused severe swelling in both hands; 3 months later, the left has recovered but my right is still affected.
    All this is purely anecdotal; we get vaccinated not to protect ourselves from covid, but rather to prevent spreading it to others.

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    Lou Hevly replied to the topic Speech to Text? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months ago

    Hi Louis,

    The Chrome browser has a Speechtexter program that seems to do quite well if you… speak… very… slowly… and… distinctly. Google “speechtexter”.

    The keyboards on my cell phone, both “Swype for Huawei” and “Google voice typing” have a microphone icon on the keyboard that opens a speech-totext dialog.

     

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    Lou Hevly replied to the topic Faith in the face of adversity in the forum Living ​With​ ​Parkinson's Disease 1 year, 5 months ago

    If bad things didn’t happen to good people (and good things to bad people), we’d all be good, but for the wrong reason: not from love, but from fear.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Do you have any questions about mannitol? in the forum Parkinson's Disease alternative treatments 1 year, 8 months ago

    I’ve been taking 7-10 grams a day (weight: 160, height 5’11) for about a month. One of my symptoms, cog-wheeling in my left shoulder, and associated discomfort when reaching up and out for something, or when flapping out a sheet when making the bed, seems to be less annoying than usual. I dissolve it in a glass of kombucha; perhaps  if I took it…[Read more]

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    Lou Hevly replied to the topic No pharmaceutical drugs? in the forum Parkinson's Disease alternative treatments 1 year, 11 months ago

    What Andrew L. said. If your body is producing enough dopamine, then you don’t have PD; if it isn’t, you do and you’ll have symptoms, which can be varying degrees of tolerable. In my case, it’s Restless Leg Symptom, which would be hell without Sinemet and Mirapexin. However, “when you’ve seen one case of PD, you’ve seen one case of PD”: you may be…[Read more]

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    Lou Hevly replied to the topic Young Onset Parkinson's Disease in the forum Living ​With​ ​Parkinson's Disease 2 years, 3 months ago

    Hola Argya:
    Welcome to the list!
    Wow, twenty-one is really young for the onset of Parkinson’s. But everybody’s different and you may be lucky and have minor symptoms for a long time. One thing for sure is that there are no two cases completely alike.

    Michael J Fox had relatively early onset, I think in his late twenties, and he still has a very…[Read more]

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    Lou Hevly replied to the topic Wondering About Azilect? in the forum Using our forums 2 years, 3 months ago

    @frances: Only 200mg? All the suplements I’ve found on Amazon are in the 400-1200mg range.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Wondering About Azilect? in the forum Using our forums 2 years, 3 months ago

    I take Azilect 1g daily along with Sinemet 3 x daily in the hope that it will delay the need to increase the Sinemet dosis in the future. I haven’t tried leaving off the Azilect to see how much worse it might get because I’m still experimenting to see whether an increase in magnesium intake –via almonds, cashews, peanuts and spinach– will…[Read more]

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    Lou Hevly replied to the topic Food Cravings and holes in your socks in the forum Parkinson's Disease Symptoms 2 years, 4 months ago

    I hear you Toni! Very true, all you say. All I can say is hang in there, enjoy to the utmost everything positive in your life.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Food Cravings and holes in your socks in the forum Parkinson's Disease Symptoms 2 years, 4 months ago

    Hi Toni,
    You don’t mention what meds you’re taking, but the agonists (ropinirole, pramipexole, etc.) are famous for provoking compulsive behavior (shopping, gambling, sex, etc.). Even sinemet or its generic equivalents can have this effect. I’m no neurologist, but from what I’ve read, dopamine is a motivational component of reward-motivated…[Read more]

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    Lou Hevly replied to the topic My last post to the Parkinson's forum in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 4 months ago

    Dear Jean:

    First of all, you will be sorely missed, but life goes on and we have to accept that most good things come to an end. I’m glad to hear you’ll be continuing Slow is the New Fast and I still think you should find a publisher for the whole series. It’s the best real, up front and honest description of someone who suffers “hard-core”…[Read more]

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    Lou Hevly replied to the topic How do you answer, "How are you?" in the forum Living ​With​ ​Parkinson's Disease 2 years, 5 months ago

    Dear Maria,

    I think there are people, and then again, there are people (See? I’m a truly profound thinker!). Some are really concerned, especially if they’ve just learned you’ve got PD and others are just going through the motions. And it’s hard to really tell who’s who. But as it is for the shepherd, for us it’s worth trying to separate the…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Are you deficient in Vitamin B12? in the forum Parkinson's Disease Symptoms 2 years, 5 months ago

    Dr Dale Bredesen, in his book “The End of Alzheimer’s, writes:
    «Vitamins B6, B12, and Folate
    Keeping your homocysteine optimally low requires sufficient levels of vitamins B6, B9 (folate), and B12, all in their active forms. Pyridoxal-5-phosphate (P5P) is the active form of vitamin B6, methylcobalamin is an active form of vitamin B12, and…[Read more]

  • 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 2 years, 5 months ago

    Hi Joe,
    Welcome to the forum.
    I played music semi-professionally until I was in my 40’s and kept it up as a hobby until I got Parkinson’s at around 65 (I’m now 70). The bad news is that I pretty much had to give up playing my instruments, the acoustic guitar and the clarinet, because 1) my coordination was just that little bit off that made…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic What PD symptom impacts your quality of life most? in the forum Parkinson's Disease Symptoms 2 years, 6 months ago

    Hi Maria:
    I’m 70 and was diagnosed with PD 4 1/2 years ago. Most of my symptoms are mild, but my Restless Legs Syndrome gets really bad if I don’t take meds. I have sporadic periods of insomnia, occasionally staying awake all night. Lately I’ve been sleeping better, perhaps due to a med schedule change. Specifically:
    6-8am 1/2mg Sinemet, 0.26mg…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic Exercise support group? in the forum Living ​With​ ​Parkinson's Disease 2 years, 6 months ago

    I try to do 30 minutes of yoga every day, but generally manage only 3-4 times a week. It’s mostly work on flexibility and balance. I also have a stationary bike and I put the control at the greatest resistance and pedal as hard as I can for as long as I can, usually 2 minutes. It’s great for relieving the symptoms of Restless Legs Syndrome.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How long does it take for your medications to take effect? in the forum Parkinson's Disease Medications 2 years, 6 months ago

    The conventional thinking is that the levodopa “competes” with other proteins when penetrating into the bloodstream. Therefore they say to take it at least ten or twenty minutes before ingesting food so it enters the blood more readily. I try to remember to take it before meals, but sometimes I forget and take it after and it doesn’t seem to make…[Read more]

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How long does it take for your medications to take effect? in the forum Parkinson's Disease Medications 2 years, 6 months ago

    No, but I try to take the sinemet before meals, because its absorption through the intestins can be slowed by the presence of high protein food.

  • Profile picture of Lou Hevly

    Lou Hevly replied to the topic How long does it take for your medications to take effect? in the forum Parkinson's Disease Medications 2 years, 6 months ago

    I take meds according to schedule (sinemet at 08’00, 15’00 and 21’00; Azilecte and Mirapexin at 15’00). Sometimes I’m experiencing symptoms at these times and sometimes not, so it’s not really a question of when they kick in.

    BTW, I’ve discovered that, at least for me, it’s not good to take Mirapexin (pramipexol) in the evening because it worsens…[Read more]

  • 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, 6 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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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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