Books Written By Parkinson’s “Experts” Are Like Bad Lawn Mower Manuals

[jimcaster]

I really appreciate this site with all of you caring people offering helpful, realistic advice.

Maybe I’m just bitter, but I just read a book by a well known neurologist and came away almost disgusted. It’s as if I have a broken lawn mower and consulted his “manual” for advice — only to learn he doesn’t actually know why my lawn mower is broken and has no clue how to fix it. Instead, I’m supposed to be grateful that he can put some tablets in my engine, which might ultimately make my mower worse (side effects).

At least for now, I have the luxury of being able to avoid the tablets and run my “mower” at full throttle intervals on the treadmill, which seems like the only undisputed way to keep it functioning at its current level.

At least for now, I have more faith in my chiropractor who has helped me regain my sense of smell than I do in the world famous neurologist/lawn mower manual author....😊

[wifeofparky]

I am sorry you are so bitter but despite all the research the cause of PD is still unknown. Until then, the docs do their best to help symptoms of PD with what tools they currently have available and hopefully improve your quality of life. No two PD persons are exactly the same.

The progress that has been made in research and in new meds becoming available for treatment is amazing. Most of what is available today was not here just 5 1/2 years ago for my husband.

I am glad you do not need meds yet. Stay active and watch your diet. Document your symptoms and keep a log. What symptoms took you to see a neurologist in the first place and have you had a second opinion with a Movement Disorder Specialist?

I wish you the best.

[jimcaster in reply to wifeofparky]

Thank you very much. In truth, I’m probably more afraid than bitter. Right now, my symptoms are extremely tolerable. I’ve had diminished (almost non-existent) sense of smell for years and slightly slow arm swing on my right when I walk. The most troubling symptom is micrographia.

I am taking supplements recommended by my chiropractor and I am about to embark on Dr. Costantini’s thiamine regimen, thanks to this website. I’m also engaging in high intensity treadmill exercise every other day and lifting weights, golfing, or walking on alternate days. I’ve also eliminated gluten, dairy, and processed foods and have lost over 30 pounds this year.

In my better moments, I realize that I may actually live longer and healthier because of the Parkinson’s diagnosis. I was diagnosed just a week ago at Mayo Clinic.

Thanks for allowing me to vent AND to help me see the silver linings. This isn’t a challenge any of us signed up for, but we are all in this together and I really appreciate the exchange of ideas. We have a lot more information at our fingertips now, which is both encouraging and empowering. 😊

[park_bear in reply to jimcaster]

Indeed PD is a call to adopt healthy habits. Dr. C's thiamine protocol has been helping me.

One cannot expect a PD book by an MD to favor supplements. With that understanding I found a book by Weiner et al to give a good view from the MD perspective. OTOH I found books by Okun to be poor and overrated.

[nourilo in reply to jimcaster]

Have you started the high dose thiamine yet?

[jimcaster in reply to nourilo]

Yes. I'm very encouraged. See my post about it for more details.

[nourilo in reply to jimcaster]

Can’t find your post...How much B1 are you starting with?

[jimcaster in reply to nourilo]

I started at 3 grams per day, but reduced it to 2 grams per day about a month ago.

[jimcaster in reply to nourilo]

I'm doing this from my phone so I'm not sure it will work, but I'm trying to paste a link to my comments regarding B1. Here goes:

healthunlocked.com/parkinso...

[Bailey_Texas]

Hello jimcasterton

First your fear and mistrust of Doctors and PD meds is unfounded. They are the two most likely things that will help you live as close to a normal life you are able to live. Exercise along with prescriptions is the only other thing that will help you control your PD. We should do what our Doctors suggest and take the meds they prescribe and report back to let them know how we are doing so they can change what we are taking and what we are doing to improve our day to day living.

I was diagnosed 12 years ago. Back then Doctors and PWP (People with Parkinson's) knew very little of what we know now. Exercise was not even suggested to me then. Doctors did not prescribe Carbadopa Levadopa at first because they thought that it only would work for a few years so they held off as long as they could so PWP could use it in in the last stages of PD when they needed it the most.

We now know that Carbadopa Levadopa does not cause dyskinesia. Dyskinesia is just a part of PD. My Doctor did not Prescribe Carbadopa Levadopa until my 8th year. I also began doing Crossfit at the same time i started taking Carbadopa Levadopa. The two turned my life around. If my Doctor had prescribed Carbadopa Levadopa at first along with exercise i would have had a lot different life. I would have about $20,000 or $30,000 more in my bank account. I would have suffered a lot less pain. My wife would have had 8 years without worry. I would have been able to work a few more years. We could have traveled more and just had 8 years of somewhat of a normal life and i would be a lot stronger and fitter.

I would have been able to do anything that i wanted to do.

I know this does not support what i said about doing what our Doctors say but times are different now. With the use of the internet and sites like this we can control PD a lot better now. We can check what our Doctors tell us to do. And try things we find here.

I had been taking Ropinirole from the time i was diagnosed and I was to a point that i was looking at wheelchairs. I could not feed myself at times and could only walk maybe 200 feet. I was gambling and i had a sex addiction (the sex thing was ok by me it was only with my wife) to where we (my wife and I my wife was affected too she just handle the pills) were having sex 4 or 5 times a day. I could have an orgasm 3 times or less a day. My wife did not get sore no matter how long or how many times we had sex. Before this we only could have sex about 3 or 4 times a week because she would get sore. I was 59 and my wife was 58. My wife was insatiable. Some nights we would go for 3 hours straight.

I don't know what got into me tonight i just felt like sharing.

[jimcaster in reply to Bailey_Texas]

Thanks, Bailey! For now, even my doctor says medication is not necessary, so I’m really exercising, eating well and trying to stay off drugs, but if I ever need them, I’ll take them...

[Bailey_Texas in reply to jimcaster]

That is good to hear so many people are afraid of PD meds and the side effects that they may cause. A lot of people write about PD meds and tell how bad they are and they write how bad the side effects can be. I think most people who write bad things about PD meds are just anti meds and would not take them even if they work 100% of the time and they had no side effects.

I just want to say that most if not PD meds do what they are designed to do. And there is no reason not top use them.

[park_bear in reply to Bailey_Texas]

The reason why you were prescribed Ropinirole instead of levodopa in the first place was due to sophisticated pharma propaganda aimed at your Doctor. Propaganda that exaggerated the downside of low profit levodopa and minimized the downside of high profit ropinirole. Here is an example - a Medscape article that completely ignores the orthostatic hypotension risk and minimizes the impulse control risk of agonists. It uses the now-debunked dyskinesia scare against levodopa:

healthunlocked.com/api/redi...

"It is not an overstatement to say that patients with Parkinson's symptoms will be less than optimally managed over the course of their illness if these agonists are not added to their regimen."

---

In general this problem has not gotten any better. People post here on a regular basis reporting that their MD is recommending a dopamine agonist as their 1st medication.

[Hikoi in reply to park_bear]

park_bear

I dont know if what you claim is trueand I cannot open the link but

I do know you are on a mission to tell the PD community that agonists are bad. Do you think they have any use at all? Are you wanting to ban them?

[park_bear in reply to Hikoi]

I believe dopamine agonists should be used only after PWP have maxed out on levodopa. There also needs to be monitoring for OH and ICD.

The link is to Medscape, which is free but they want you to register with them first.

[Hikoi in reply to park_bear]

Thanks pb. Most drug formula leave the starting med up to the treating consultant. The choices usually are between levadopa, dopamine agonist and MAOB inhibitor. Decision are based on multiple factors including personal preference and bias and you have given yours. I might agree except it wasnt my experience and i am still on agonists. I do think there is a limit to their use and that they are generally not tolerated well in older people so should be avoided.

[JohnPepper]

Why not read other books written by Pd patients who have managed to actually reverse their symptoms? I not only have a book but have a website with lots of HELPFUL TIPS - reverseparkinsons.net - and contact me personally.

[jimcaster in reply to JohnPepper]

Thanks, John! I have read your book and was very inspired!! I am still able to run, so my “fast walking” is high intensity intervals of walking/running on a treadmill every other day. You are my role model. 😊

[JohnPepper in reply to jimcaster]

I don't advocate doing intensive exercise every day. I have every reason to believe that our muscles need time to recover after doing strenuous exercise. I have injured myself on many occasions, causing me to have to stop exercising for a period of time on most of those occasions. But that is your choice.

I increased my gym time to 90 minutes a day, for six days a week, at the time of my diagnosis, and my symptoms got worse at a faster rate than they had before I was diagnosed. When I stopped going to the gym, two years later and started doing the fast walking every second day, my symptoms immediately started to improve.

Being very clever and feeling very cocky, I started to walk fast every day. That was when I picked up problems. Torn muscles and tendons take a long time to recover. So I became a lot less cocky and realized that I was not as clever as I thought.

[jimcaster in reply to JohnPepper]

I agree, John. I’m also “fast walking” every other day....

[JohnPepper in reply to jimcaster]

Well done! Please let others know how you are doing with the walking.

[Farooqji]

While agreeing with you, I will make no comments here. My similar views in another post had badly backfired by someone who considers neurologists to be sacred cows and ultimate