Forum Replies Created

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  • lou-hevly

    Member
    September 2, 2022 at 2:25 am in reply to: Do you use music to manage Parkinson’s disease?

    I had to give up playing both the clarinet (jazz) and the guitar (country/blues, song writing) because the PD messed up my coordination just enough that playing became frustrating. However, listening to music is still a big part of my daily activity.

  • lou-hevly

    Member
    September 3, 2021 at 12:45 pm in reply to: Did you notice changes to your symptoms after getting vaccinated?

    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.

  • lou-hevly

    Member
    August 25, 2021 at 12:28 am in reply to: Speech to Text?

    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.

     

  • lou-hevly

    Member
    December 19, 2020 at 4:10 am in reply to: Faith in the face of adversity

    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.

  • lou-hevly

    Member
    September 9, 2020 at 5:01 am in reply to: Do you have any questions about mannitol?

    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 with water the effect would be less? Who knows? I’ll post back in a couple months with a progress report.

  • lou-hevly

    Member
    June 24, 2020 at 4:14 am in reply to: No pharmaceutical drugs?

    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 the exception! Good luck!

  • lou-hevly

    Member
    February 18, 2020 at 2:48 pm in reply to: Young Onset Parkinson’s Disease

    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 active and productive life.

    Things you can do that are almost for sure safe and may help are:
    Eat healthy. Fresh fruits, nuts and vegies, blue fish (mackeral, tuna, salmon), organic grains and cereals; avoid processed foods.
    Get a lot of exercise, do yoga.
    Get a blood test and be sure your level of basic vitamins, especially B-1, B-6 and B-12, C and D are at healthy levels.

    I’ve had PD for the last 5-6 years (I’m now 70).

    All the best to you and may your symptoms be light,
    Lou

  • lou-hevly

    Member
    February 12, 2020 at 9:48 am in reply to: Wondering About Azilect?

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

  • lou-hevly

    Member
    February 12, 2020 at 1:49 am in reply to: Wondering About Azilect?

    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 somewhat relieve the RLS (Restless Leg Syndrome). However, I have sporadic insomnia and this is also a factor. So I don’t want to add any other factors in the mix till I figure out whether the diet change is having an effect.

  • lou-hevly

    Member
    January 17, 2020 at 12:54 pm in reply to: Food Cravings and holes in your socks

    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.

  • lou-hevly

    Member
    January 17, 2020 at 3:33 am in reply to: Food Cravings and holes in your socks

    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 behavior. The anticipation of most types of rewards increases the level of dopamine in the brain. So we”re flooding our brains with artificial dopamine, which perhaps has an effect on our desire levels; if normally you have been able to control your desires for certain foods, now with this artificial dopamine flowing, the desires are more than you can handle.

    Eating junk food is relatively harmless unless it gets completely out of hand, but there have been cases where PD victims have lost everything on gambling sprees or have had their marrriages break up over infidelity, and especially the agonists have been shown to be responsible for this.

    As for the sock hole problem, do you keep your toenails short ;-)?

  • lou-hevly

    Member
    January 8, 2020 at 4:40 am in reply to: My last post to the Parkinson’s forum

    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” Parkinson’s that I’ve seen anywhere. Like I think I told you, my wife cried when she read my Catalan excerpts from your work.

    You’re an inspiration to us all and if my PD ever gets to a critical state, I won’t be bitch and whining: I’ll be trying to live up to your example.

    God bless you,
    Lou

  • lou-hevly

    Member
    December 6, 2019 at 7:28 am in reply to: Are you deficient in Vitamin B12?

    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 methylfolate is an active form of vitamin B9. When you get your blood tested for vitamin B12, you’ll see that the “normal” values are between 200 and 900 picograms per milliliter (pg/ml). This represents one of many examples in which physicians accept as “within normal limits” values that are clearly suboptimal. For vitamin B12, you’ll often see a footnote to the results, explaining that “normal” levels between 200 and 350 may be associated with vitamin B12-deficiency-related disease such as anemia and dementia! You therefore don’t want to walk around with a “normal” B12 level of 300; you want a level over 500.»

    As for the difference between methylcobalamin and cyanocobalamin, see: https://www.justvitamins.co.uk/blog/cyanocobalamin-versus-methylcobalamin/

    Last July my blood test showed B-12 to be at 226. After 4 months of taking a 1000mcg supplement it only went up to 298, so now I’m taking 2000mcg daily.

  • lou-hevly

    Member
    November 15, 2019 at 5:17 am in reply to: Exercise support group?

    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.

  • lou-hevly

    Member
    November 13, 2019 at 1:59 pm in reply to: How long does it take for your medications to take effect?

    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 much difference. What I do notice is that the symptoms are worse and more frequent the less I sleep.

  • lou-hevly

    Member
    November 7, 2019 at 5:01 am in reply to: How long does it take for your medications to take effect?

    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 my insomnia.

  • lou-hevly

    Member
    November 5, 2019 at 12:14 pm in reply to: Neurologist and treatment style

    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 and he went ahead and added it to my prescription without my even having to go in for an appointment. And, as it happens, it turned out to be effective; my RLS has improved greatly.

  • lou-hevly

    Member
    October 22, 2019 at 10:59 am in reply to: Azilect/rasagaline; have you tried it?

    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 that is not very precise: two people with the same symptoms might come up with different scores; or, a PD patient and his or her caregiver might come up with different scores, based on the same symptoms.

  • lou-hevly

    Member
    August 5, 2022 at 4:14 am in reply to: Which symptom is most challenging to navigate?

    Have you tried Kayam tablets? My wife (63 years old) swears by them. They’re on Amazon.

  • lou-hevly

    Member
    December 7, 2019 at 7:58 am in reply to: How do you answer, "How are you?"

    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 sheep from the goats.

    Anger is good for catharsis, for the “purgation of emotions”, but it’s probably not a good place to stay. And has being diagnosed with PD been responsible for making you “doubtful and suspicious of almost everything”? I can’t really empathize that well, because I’ve so far been “lucky” and had mild symptoms (Well, if I were really lucky I wouldn’t have got PD in the first place!), so if having PD has caused major disruption for you, then all I can say is I’m sorry for you.

    Finally, here’s a relevant quote from Michael J Fox’s web site:
    «Many neurologists report that symptom deterioration is often significantly slower in those who take a positive and proactive stance toward their condition than in those who do not.It would be ridiculous to suggest that a positive mental attitude is achievable all the time. But we have found various methods that help enormously to remain upbeat about life.»
    https://files.michaeljfox.org/Guide_for_the_Newly_Diagnosed.pdf

    All the best,
    Lou

  • lou-hevly

    Member
    December 1, 2019 at 6:00 am in reply to: Why did you join this forum?

    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 playing frustrating and 2) my playing level has always been such that I had to dedicate significant time just to keep up a mediocre level. The good news is that my singing isn’t affected, at least so far. You say you’ve lost some chops, but of course you have experience and expertise, and so perhaps you can learn to do more with less.
    What style of music do you play? Are there any links online we could follow to hear you?
    All the best,
    Lou

  • lou-hevly

    Member
    November 26, 2019 at 12:01 pm in reply to: What PD symptom impacts your quality of life most?

    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 Mirapexin
    1-3pm 1 mg Sinemet
    7-9pm 1 mg Sinemet, 1 mg Azilec
    12-1am (just before bed) 1/2 mg Sinemet
    You don’t mention what your other symptoms are nor what anti-Parkinson’s meds you’re taking. This might be good to know. Part of my insomnia is due to not being able to get into a comfortable position –I toss and turn– but I think this may be a PD symptom so I’ve started taking half a Sinemet tab just before bed.

    All the best,
    Lou

  • lou-hevly

    Member
    November 7, 2019 at 7:46 am in reply to: How long does it take for your medications to take effect?

    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.

  • lou-hevly

    Member
    October 30, 2019 at 3:24 am in reply to: Sinemet dosage

    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.

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