Hindsight Requested

I wondered if those of you who have walked this PD path for awhile could give hindsight advice to those of us at the beginning of the path. It would be greatly appreciated,

Warm Regards,

Sarah

37 Replies

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  • I'm in my 6th year. I'm on B1 vit (see my posts for proper type of oral b1). I think it is working for me.

    Today my neighbor said a friend told of their PD friend's success w/ CBD oil. I have tried in the past but maybe the strength not high enough.

  • RoyProp we were wondering if it's not an inconvenience if you could ask your neighbour how much CBD oil his friend was taking to have success please?

    Probably a silly question as it would depend how strong the oil is too.. Aargh sorry, going around in circles here.

    Some do say it is neuroprotective but I guess it hasn't been proven yet (or has it?)

  • Previously I purchased medium strength oil from CW of Colorado. I found no benefit, even at double dose. I am reluctant to purchase for that reason.

    I am waiting for my neighbor to receive more info.

  • Thanks so much for getting onto it RoyProp. We're experimenting with it and it's difficult. Not sure whether it's the CBD or other factors that makes my husband feel spaced out at times.

  • Thank you RoyProp,

    I have heard of CBD oil for cancer pain and for tremor help, but don't know much more about it. Here is the most impressive link I've seen about that:

  • Stay active ....

    Stay in motion....

    Did I mention ... stay active ?

    There will be times, hours, days where u may be down ... it will pass

    When my meds are "off" I'm a mess...

    Can't function at all

    However I did just begin taking the extended release c/l

    My off times aren't so drastic as they were

    It seems the immediate release comes on hard, doesn't last long enough , crashes even worse

    Eat healthy

    Stay active

    I hope this helps

    Be well

    C!

  • I totally agree with the "stay active". My doc told me to exercise like my life depends on it. Not really into exercising, per se, but I did find an inexpensive exercise bike for the house and use it as often as I can....it does make me feel so much better.

  • Sounds as though you have a great Dr!

  • Ok, I like that way of saying it, ha! Thank you Truescorpion.

    Sarah

  • Thank you very much, C,

    Sarah

  • I was diagnosed 14 yrs ago at the age of 46. There's not a lot I would have done differently except I would have tried to deal with PD without meds and tried exercising & supplements first. But, on the otherhand, the meds help me move better so I can exercise better. Because of exercising I've been able to keep my meds low. I would have retired earlier because the stress from working was harder on me than I realized. Highly recommend Rock Steady Boxing (RSB). rocksteadyboxing.org. If there isn't one near you, any vigorous exercise will help. RSB now has 470 affiliates around the world with over 20,000 members. It's non-contact, it's fun and it helps.

  • Also check out Delay the Disease. I’m a certified instructor in Minneapolis. This program is in many cities. Specific to Parkinson’s, we use an exercise formula that combats the symptoms.

    Www.delaythedisease.com

  • I'm very aware of Delay the Disease. It also is a very good program. I met David Zid several times at Symposiums.

  • Thank you heidi1, I looked this up. What a good idea to have an exercise program specifically set up for people with Parkinson's. There is only one in California, and too far north for my Mom, but maybe someone else following this thread will follow the lead. Also, it looked like they had DVDs, which might be helpful too. Thank you,

    Sarah

  • Delay the Disease has books and DVDs for sale on amazon. There are also some videos on YouTube. In addition, you can follow their Facebook page which often has helpful tips/exercises.

  • Thank you laglag, I am recommending to my Mom that she stick with a version of Mucuna Pruriens and supplements at first. We are also looking into the amino acid (Hinz/Stein) protocol at least first. I looked up and found a rocksteadyboxing program about ten minutes from my Mom's house. Ha, I'm trying to picture my sweet, soft-spoken mom boxing at 79 years of age. Older people do it too?

    I'm grateful for the advice,

    Sarah

  • Yes! A lot of older people go to Rock Steady. Go to the website again & watch the videos. You'll see how everyone loves it. Also read the Testimonials, I have one under Debbie.

  • well thats a hard one as we are all different people with pd all have different things happening to us but one thing most of us do is exercising i do every day some of us have pain some not.i just got home 2 weeks ago from china i had some stem cell work done im not sure what will happen as it takes awhile to click in.so it will be months before i know if some thing will happen but at least i tried.so keep taking your meds some day there will be a cure for us and the people like us.i hope soon.regards john.

  • I believe there will be a cure. Now would be good! Sending you lots of healing thoughts. Please let us know how it goes.

    Best,

    Sarah

  • Hello

    We are all unique in our PD journey. I am nearly nine years into mine. What I know now and wish I had known eight years ago; exercise, to help sustain your physical strength, balance and posture. My partner always comes with me to my Neurological appointments, two sets of ears. I always type out my symptoms and issues on a sheet A4 for my Neurologist to read, as it is easy to forget something important. If you are diagnosed when you are young (I was relatively young at 52) really look into the drug options available to you some doctors push Levodopa when perhaps You can manage your symptoms with other medications, I managed to hold off taking Levodopa for six years. I have always been open about my condition, on the whole people are very supportive. Yes I lost some relationships noteably my sister (whom I suspect is terrified she could get it and a friend whose elderly father had PD).

    Watch out for certain antidepressants re weight gain which exposes us to other health issues.

    Each day will be a challenge one way or another but there is a lot of good living still to do. Be a well informed PD person, keep as fit as you can, laugh at yourself and when anxiety creeps in think of something that makes you very happy in my case it is my Grandson Christopher.

    Best wishes Lovepug

  • Thank you Lovepug, Love the name! Exercise seems huge. I like the idea of a spreadsheet. In addition to another set of ears, which is wise, is to record on your phone the conversation. That's always great for rewind. I was amazed at my mom's first appointment. My sister listened in by phone, my stepdad was there and my mom. I got three different versions afterwards! My parents heard that she didn't really have Parkinson's. My sister said, no the doctor definitely said she had it. Many thanks for the advice,

    Sarah

  • If you are interested in the boxing therapy mentioned above but don't have classes near you I have been using

    hasfit.com/workouts/home/ki...

    The big fast arm and leg movements seem to be very helpful. (My attempts aren't pretty but better to do it than not I reckon.) There are dozens of fitness programmes from beginners, reduced mobility etc to advanced.It's free and I run it off an ipad app but its all free on youtube etc also. You tube has loads of workouts if this isn't up your street. Better to go to classes near you if you have them though especially the boxing therapy. I'm just starting out like you and currently trying to keep off meds for a while (against advice of the professionals wanting me to go on levadopa though have minimal symptoms so far, have made this decision largely from reading posts like those above) . So far so good , trying to exercise as much as possible and messing around with supplements in a not very convincing or scientific way. Don't think I'll manage 6 years though. Great question, good luck!!

  • Thanks for the exercise link. No ready steady boxing anywhere near me so very welcome suggestion.

  • Thanks Ratzkywatzky, I know! Everybody seems to be pushing the Sinemet. I don't know if it's because it's important to interject more dopamine into the system to keep other neurons from dying?? But if it has an average of 6 years of effectiveness and then leaves people with extra unwanted muscle jerking, I think, why is this so wonderful? We are looking into the Mucuna Pruriens and some of the supplemental recommendations by Rich (silverstrov on this board). Wish more medical doctors would be willing to consider alternatives instead of pretending it doesn't exist. Thanks for your help. If I stumble upon the cure I will be sure to get back to you!

    Sarah

  • Exercise, exercise, exercise, eat well , fresh air , laugh. My husband was diagnosed 11 years ago, he didn’t take medication for 2 years , if he had his time again he would have started sooner as he had to give up running due to foot cramping , he was a marathon runner . After 8 years he retired from being a head teacher, best thing he did as it gave him time to concentrate on himself doing things he wanted to do and much less stress! I bullied - yes bullied him into joining a physio led gym last Nov and to cut a long story short he has lost 10lbs in weight, he has more upper body strength than I’ve ever known him to have, he does Pilates - that was a major breakthrough and on Sunday he is running a half marathon, by his own admission he never thought he would be able to do that again . Don’t get me wrong he has bad times but the goidcdef outweighs the bad 😀

  • Could /did he start running again as soon as he went on meds?

  • to tell you the truth he didn't try, he was so busy at work and he also started painting again - he's an artist - and renovating an old Beetle car, but i think he would have been able to, it was just confidence. His running has started again due to the support of the instructors at the gym who encouraged him to try especially Derek an ex leicester Tigers player who didn't realise John had Parkinsons at first and when he found out that Johns aim was to run again he really encouraged him. Johns first runs were to complete, over a month the Parkinsons UK Time to Run in May, the idea was you completed a distance - half marathon for john - over as many days in May as it took you. John did it in two days! He raised over £800.He does have to time his runs with his meds, he goes 30 mins after taking them so the half marathon this weekend will be a challenge for us as he takes meds at 8 and it starts at 9.15, it will take John hopefully just under 2 hours , but he needs another tablet at 11am so he will have to carry one with him! he will have lots of sup.port around the course with water and rescue tablets if necessary.

  • Funny enough I'm an artist/ illustrator, still managing that OK at moment. Thanks for the reply, gives me hope I'll be able to keep on running and painting for a while yet then! (and not be too stubborn about not starting meds!) Sounds like your husband has a great attitude, an inspiration to us all!

  • Thanks Ruff1, Wow, that is impressive. And it's interesting to hear that he wished he had gone on meds earlier, because I've heard the opposite from a couple of people. Thanks very much for your advice,

    Sarah

  • At one time the thinking was to stay off medication as long as possible but we’ve read lots that contradict that theory . Johns thinking is live for today you don’t know what’s round the corner , we have lost three friends in two months just lately, 1 57yrs -cancer, 1 61 yrs -heart attack and 1 67 kidney cancer . Why struggle on when medication can help you? 😀

  • I found that Pedaling at 80-90 rpm for 3-4 hours per week will lower symptoms an average of 35%. My book, If I Can Climb Mt. Kilimanjaro, Why Can’t I Brush My Teeth?, may help.

  • Nan, how and where can I find your book?

  • You can buy it on Amazon and my full name is Nan Little. It’s available in paperback and on Kindle. Thanks for asking.

  • Thanks NanCyclist, That's great that you're able to quantify it in a way to really see the amount of help. Exercise seems to be the number one piece of advice. And what amazes me is a major parkinson's association refuses to verify that exercise makes a difference. It reminds me of when the cigarette companies said we can't really prove that there is a for sure link between cigarettes and cancer. Clearly there is a link between exercise and PD help, experiencer verified! I am so impressed with what I read from your book on Amazon and will plan to get my mother the book. I have also written a book for OCD advocacy called Kingdom of Mind. You are inspiring, thank you, Sarah

  • Clearly the exercise message is getting through :) The one thing I would add is that it has better effect if it's an exercise that you enjoy. In my case it was LSVT BIG. I still do the exercises daily, nearly two years after doing the course.

  • Thank you, I will look into that.

    Many thanks,

    Sarah

  • I know PwP's at Rock Steady that have taken LSVT BIG and LSVT LOUD also and these classes helped them move even better. The LOUD is to strengthen the voice and actually works really good if you keep practicing.

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