About me

[Megafone]

In the late spring of 2015, I found myself depressed. I sought out a psychologist. I quite liked him, but treatment had no positive effects. I was experiencing strange physical effects at the same time… Things like walking became difficult, my body was stiff, and my sense of smell and taste had diminished significantly. My family doctor stated that he thought it was not Parkinson’s, but he didn’t have another explanation, so he referred me to a neurologist who, in the first five minutes of meeting with me declared that I had classic Parkinson’s, with a side of dystonia at no extra charge.

Immediately I started on a course of Levodopa, and Primapexole for the dystonia, and within a week, the depression was gone, and I felt physically much better.

Fast forward to August 2023… I now take eight Prolopa capsules a day, and three Primapexole pills per day. I live a fairly normal life… With the exception of having to quit working. I was self-employed as a graphic designer, and I found that I I was making mistakes with billing, and everything took twice as long as it should’ve. Fortunately, in the early part of my career, I joined the registered graphic designers of Ontario, and I chose to pay monthly for disability insurance, which covered Parkinson’s.

I work out with a trainer twice a week, eat a diet that skews toward Keto, with the intention of going full keto, hand-in-hand with regular fasting, which I have found has restored some of my physical capabilities and reduced some of the Parkinson’s symptoms. For example, my sense of smell and taste has come back about 75%, and instead of having to go down the stairs in the morning on my bum, I am now able to walk downstairs. This summer, I have rebuilt our 16‘ x 20‘ backyard deck, and I still am able to enjoy driving my convertible. I have been approved after going through the testing for deep brain stimulation (DBS).

[Bolt_Upright]

Thanks for sharing. Maybe you can share a picture of your deck?

Maybe you would like to join the Zoom calls MBAnderson is so nice to host? You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[MBAnderson]

Yeah, phooey on your health, it's your deck we care about.😁

[ghoegap in reply to MBAnderson]

😂

[JohnPepper]

All exercise is very good for PD patients, BUT! THere is only one exercise that can reverse the movement sytmptoms of PD. That is FAST WALKING! Not casual walking, but WALKING AS FAST AS YOU CAN, PRODUCES A SUBSTANCE CALLED GDNF IN TH EBRAIN AND THAT REPAIRS YOUR DAMAGED GLIAL CELLS IN YOUR BRAIUN AND YOU GET A GREAT DEAL BETTER>

I have had PD since 1992 and in 1994 I started doing the FAST WALKING and by 1997 I WAS ALMOST FREE OF ALL MY MOVEMENT SYMPTOMS.

I take off-the-shelf-medication for all th eother symptoms.

Contact me for further information or buy my book.

[Megafone in reply to JohnPepper]

Thank you John! [We met in Ottawa ON Canada when you came to speak in 2018, I believe.] I walk my dogs every day, but the furthest I can go is about 1.5 kilometres, because about 1 km into it, my right foot turns inward and I hobble the rest of the way home. Your advice was to walk alone [no dogs], but they always need exercise. I guess, within each day, I could try walking with them an, later on, without them…

[FoieGras in reply to JohnPepper]

Hi John, I'll give it a shot! Only today has the blistering heat ended here in the South of France. Even walking slowly to my car was a challenge at 38°C and 85% humidity. Can you tell me the frequency of your slogs (daily?) and the distance/time you put in to feel the benefit. For me the distance is important because then I can work out which pub to go to to satisfy the formula. Thanks for your input.

Cheers, Dan.

[JohnPepper in reply to FoieGras]

In 1997 my distance was +-9 kilometres in one hour. Today, I am lucky to do 400 metres in 7 minutes, which is 17.5 kilometres per hour. That is because of other health problems, which stopped me from wealking any further, before getting bushed. I am nearly 89 and not many men walk faster than that but they do walk further.

[FoieGras in reply to JohnPepper]

Hi again John

Sorry, I'm not very good "wiv sums" but 400m in seven minutes works out at 3.5kms.

I reckon that's doable for me. But how often? Yes I can I can suck it and see, but do tell me from the get go and save me a lot of sucking please.

Cheers, Dan.

[jeeves19 in reply to JohnPepper]

Butt out John and stop posting these ridiculous claims. They’re inaccurate and unhelpful to newly diagnosed PWP.

[Despe in reply to jeeves19]

Please be nice, no harsh comments! HOPE should be alive!!!!

[jeeves19 in reply to Despe]

I’m trying Despe, I’m trying 😠😠😤😂

[Despe in reply to jeeves19]

How are you doing Adam? All good? Take care!

[jeeves19 in reply to Despe]

Yes. All good here Despe. Thank you 🙏

[pdpatient]

Hi Megafone. I am confused. From your commentary, it appears that you are doing quite well with the medication regime and your training regime.

Can you please help me understand why you would be going for DBS now?

[134A in reply to pdpatient]

I was wondering the same thing. Please enlighten us 😀

[Megafone in reply to pdpatient]

Yes, as the Levadopa is less and less effective as time goes on, and side effects are greater, I signed up for DBS to mitigate these realities. After hearing a dozen or more people answering questions about their experience with DBS, I feel the risks are worth it. The literature I’ve read and the doctors I’ve spoken to do not promise any reduction in the amount of meds you take after the DBS surgery, but several of the people I’ve heard interviewed who had the surgery and watch their diet did have a reduction in the meds they take on a daily basis. The overall picture I got was that one can live a life closer to normal once the controller has been programmed.

[elizajohn1 in reply to Megafone]

my husband's neurologist recommended DBS for him at a relatively early stage so that he would have the benefits of it longer. There are some benefits, but he continued to need carbadopa levadopa after, and took that until he had a severe case of psychosis, which lead to him being hospitalized and diagnosed with Lewy Body. Five years later, he is at home and does not seem to have Lewy body so has recently started taking CL again in small doses, which helps him have more strength- until he goes "off". then is it like withdrawal. I would caution if you have depression and anxiety and cognitive issues- he didn't pass the psych eval at UCSF but asked for a second review and got one.

[pdpatient in reply to elizajohn1]

Thanks for sharing. So you remember what the target was? I too have my neurologist at UCSF

[elizajohn1 in reply to pdpatient]

not sure what you mean by "target".

[pdpatient in reply to elizajohn1]

Target as in where the electrodes are placed. There are several targets, but the common ones are STN, and GPi. These we the ones UCSF offered me with the caveat that's STN resulted in great reduction in pills but with increased risk of impulse control. It is also the one with the most positive effect.

GPi also substantially increases predictable motor control but doesn't usually result in less Sinemet. It's also with less side effects. So, my question was if your husband got STN or GPi.

For the benefit of others, here is a link to the options :

ncbi.nlm.nih.gov/pmc/articl...

[Megafone in reply to elizajohn1]

yes, thank you for your reply. I don’t have depression, nor anxiety, although before I was diagnosed, I was depressed. But as soon as I got on the levodopa, the depression evaporated. Cognitive issues: I have a little trouble in the processing department, but the neurosychologist said it was not that bad.

[pdpatient]

Thanks to jeeves19 , we're going to soon find out in real time 😀👍