[Beata]

I was exposed to DDT several summers as a child. My parents and our neighbors in Michigan would contract with a spray plane to spray DDT to control the mosquitos. We thought it was great fun to run behind the spray plane and play around in the DDT mist.

[Beata]

Exercise exercise and more, you guessed it, exercise!

[Beata]

Hi All! I started taking CBD about a year ago.  I went to a dispensary in my area (San Diego) on the urging of a family member and asked what they recommended for sleep disturbance, because that was what was bothering me the most. They suggested a combo of CBD and CBN, 5 mg. I tried a number of different brands until I found one that worked. I am currently taking gummies  flavored with either mango or elderberry. Yum!  Various different brands are flavored with other flavors. I had to play around a bit with dosage and settled on 2.5 mg, a half of a gummy. Since that time my sleep is almost back to normal. And with good sleep I feel almost as if my brain is healing, if that’s possible. I am currently no longer exhausted and crabby

I do still experience occasional disturbingly vivid dreams and talking in my sleep (my poor husband!). Melatonin addresses that well when it happens.

CBD and CBN do not get me  ’high’ so please do not use that as a reason not to try it. I just drift off and sleep deeply.

[Beata]

Hello All, you are so inspiring and brave.
I was diagnosed five years ago and feel good. I take Sinemet and Azilect and my symptoms seem to be currently controlled. I exercise daily, am learning Spanish, try to do new things to keep my brain off balance, have begun painting, and take handfuls of supplements. I have two questions. Firstly, I do plan on starting mannose, but I am amazed that you all are able to tolerate coffee. I loved my coffee fix, but I had to give it up because it gave me major shakes. How do you do it? SO envious.

Second, given the fact that the biome is off kilter in Parkinson’s, what do you take in order to adjust the gut biome? I’ve heard acidophilus and probiotics and probiotics. Does anyone have insights?

thankyou thankyou thankyou

 

 

[Beata]

In the scheme of things this counts for, well, nothing, but it makes other people giggle. Myoddest symptom? When I get a pedicure, the pedicurist scrubs the bottoms of my feet with a lava stone. And it KILLS me. My feet are so sensitive that I cannot tolerate it any more. The ladies working in the salon all get a great giggle out of it when I moan and wiggle but it truly is torture for me! Does anyone know if Parkinson’s make you more ticklish?

[Beata]

Sure! I’ve been diagnosed for five years and am doing well. I exercise, eat well, keep my mind active, and try to do all the things that are recommended for Parkinson’s. So far so good.

[Beata]

Hi There.  I have a very delicate stomach and was therefore amazed to find that Sinemet, a combo of Carbidopa and Levodopa,  not only addressed my Parkinson’s symptoms but also did not upset my stomach. I believe that Levodopa is the component that buffers the formula and prevents nausea.
As for sleep, I have found that I do well with 15mg timed release Melatonin and .25mg CBN/CBD, the latter to be obtained at a dispensary. I have lately added 500 mg Niacinamide. I still have my rocky nights occasionally but this regimen helps.
Additionally, my mantra is exercise exercise exercise, as much as I can. When I let up I don’t feel as well, I don’t move as well, I don’t think as well.

 

 

 

 

 

[Beata]

Hi All.

 

It is so good to hear from all of you. I get strength and encouragement from reading your thoughts.
I have had crazy dreams since young adulthood, didn’t know about a link to PD until I developed more symptoms and was diagnosed 3 years ago. (I am 67). For me exercise is crucial, affecting sleep and elimination and mood. If I don’t get out there I don’t perform as well, and I also don’t have as much fun. I like to have fun!

So I go to the gym and I do Rock Steadt and I SUP paddle on the ocean and Iswim and I do whatever I can to get my heart rate up. I’m not perfect but the days where I stick to it are definitely better.
so my message is, get out and do it!

 

 

 

[Beata]

I remember when I was 12 or so, my parents and neighbors hired a light plane to spray the neighborhood with DDT to kill the mosquitos. The plane flew low and we chased the plume of white mist, playing and laughing. I remember my skin was moist from the mist.

[Beata]

I try to exercise daily, 5 days a week for at least 30 minutes. Usually more. I go to boxing classes, go to the gym, walk, etc. I find I go through periods of quite a lot of joint and muscle pain, and exercise seems to help as long as I don’t push too hard. If I over exert I feel horrible, flu-ish. COQ10 has made a major difference as have pregnenalone,  vit D, and other supplements. Im taking Sinemet and Ropinerole and Azilect. I’ve been diagnosed for 4 years or so. Six months ago I went to see a naturopath to see if I could feel better. He did blood work, and recommended a bunch of supplements.  They have definitely made a major difference in my energy level as well as my sleep and sense of well being.
additionally the naturopath found that I have hugely elevated levels of lead and mercury. I did a series of chelation sessions. I feel prettt good a lot of the time now.
onward!

[Beata]

I have had. nightmares about being chased for decades, even though I e only been diagnosed about four years. I have unfortunately slugged my husband and have thrown myself out of bed. Thank goodness my neurologist recommended melatonin. It seems to take care of the problem. And additionally helps with sleep.

[Beata]

I have been attending a Rock Steady Boxing class since shortly after my diagnosis 3 years ago. It is very enjoyable and is one heck of a great workout. I always feel much better afterwards. It is inspiring to see how others handle their challlenges. I learn so much.

[Beata]

Hi All! I find that, at least so far, constipation is only a problem when my diet slips. I eat primarily greens and protein, in the form of fish or nuts or beans, and fruit etc, and rarely pastas or bread or other carbs. No dairy, as it really affects my digestion and thought processes. I find it gums me up, physically and mentally.
Also, lots of water is so important.
I do a tummy self massage every morning before getting out of bed. Deep pressure, moving from right lower quadrant up, across above the umbilicus, then down, ie following the path of the large intestine. Deep massage stimulates peristalsis, or movement, of the colon and speeds elimination.
Hope this helps!