Sinemet has saved my life, for now. - Cure Parkinson's

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Sinemet has saved my life, for now.

michelagvolpe profile image
35 Replies

Great depressive crisis last night with accelerated breathing, tremors, stiffening. When you have no one competent to share your condition with and have some comfort, it is dangerous not to have Sinemet at hand. I had to run and get it while I was still sane enough to avoid taking another kind of pills.

It's very difficult, I hope I can do it because I have responsibilities towards my brothers suffering from ataxia. But I'm very tired.

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michelagvolpe
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35 Replies
pdpatient profile image
pdpatient

My prayers are with you and your family and I pray that you continue to have the strength to take care of yourself and your brothers.

michelagvolpe profile image
michelagvolpe in reply topdpatient

thank you, I don't believe in God, but in the power of our brain and mind. Mine are weak at the moment. I need energy from outside.

JohnPepper profile image
JohnPepper

I took Sinemet in 1992 for my PD but it diod not reeverse the symptoms in any way.

I then started to do FAST WALKING, which had heloed my late wife with her health problems and she bgged me to do the same. I eventually did, but with no cob=viction.

Three years late rI had no symptoms of PD. I am not cured I simply have no PD symptoms as long as I walk for one hour, every second day, as fast as I can.'That was 32 years ago and I am now 89 years old and still hav enoi symptoms.

I look forward to many more years of walking as fast a I can.

Read my story!

Gymsack profile image
Gymsack in reply toJohnPepper

John you do not know what the hell Parkison's is, you have never experienced it .

Walk for an hour? sometimes I can not stand up and keep my balance for 5 minutes.

why dont you take a walk John, a long, long walk.

tiredpuppy profile image
tiredpuppy in reply toGymsack

Everyone is at a different stage of this disease and everyone responds differently to meds and activities. I'm sorry you are seriously affected now. But all should be able to share what has helped them, and perhaps someone else will find help from that. Quite a few here are able to exercise for an hour. We can read posts and just keep going if we find them inappropriate for our situation. (I quit following this forum for several years because the snarky comments discouraged me too much, and I missed out on a lot of information as I tried to help my husband. Please don't make me sorry I'm back.)

JohnPepper profile image
JohnPepper in reply toGymsack

I was diagnosed with PD in 1992, probably before you were born. I had to give up my job and became self-employed. I won't think of you as an idiot but rather as misinformed.

Be positive and start to find out how you can handle your own health problems. Help others to also solve their health problems!

Esperanto profile image
Esperanto in reply toJohnPepper

Unfortunately, there is no exchange taking place to somewhat nuance your experiences, as I have asked you several times. We probably just need to read your story and especially buy your book...

JohnPepper profile image
JohnPepper in reply toEsperanto

Hi Esperanto

That woulkd be the easiest! However, in one short sentence it consists of diagnosis of PD, Reaction to that. What happend two years after diagnosis and how I reversed my PD and how anybody else can reverse their PD.

Esperanto profile image
Esperanto in reply toJohnPepper

From what I gathered from your book, it appears that you developed a form of chronic stress-induced Parkinson's disease. You mentioned that you attributed the root cause of your issues to work-related factors: low self-esteem, struggled to cope with the demands of managing your own business, working 16 hours a day, and getting less than 4 hours of sleep and overweight.

The solution you outlined included starting with the right medication, dedicating ample time, exerting significant effort by adopting a positive mindset, effectively managing stress, and making the wise decision to leave your stressful job and to enjoy life as a retiree. Additionally, you made important lifestyle changes with diet and engaged in fast walking as a form of exercise. However each time you became unreasonably stressed some of the more noticeable symptoms slowly returned.

JohnPepper profile image
JohnPepper in reply toEsperanto

I must stress that I only took PD medication for one year, after which I only did FAST WALKING and my ovement symptoms had all disappeared within three years.

I have stayed PD movement symptom-free since 1997 and have continued with the FAST WALKING ever since!

Esperanto profile image
Esperanto in reply toJohnPepper

Thank you John for your response. In your book, it is clear that your anti-stress measures, particularly the prospect of a carefree retirement, have helped alleviate your PD symptoms. Your fast walking likely supported this, but it could have been perhaps any other form of exercise in the outdoors as well.

JohnPepper profile image
JohnPepper in reply toEsperanto

No! No! No! Just in cas you do not believe it - NO!

I tried every exercise in the gym and only when I had given up an dmy late wife had begged me to do the FAST EWALKING with her, which has=d helped her so much, did I give in and start the FAST WALKING and ONLY THEN DID MY PD BEGIN TO COME RIGHT. I think the dfast walking exerts maximum effore and sustains it until you stop.

It does not pay to do it for more than one hour every second day.

I have nbeen PD movement-symptom-free sibce 1997.

Esperanto profile image
Esperanto in reply toJohnPepper

Yes! Yes! Yes! 🙂 I am convinced if you choose an intensive outdoor sport, such as hikes, nordic walking, powerwalking, triathlon, which you also like, the effect is pretty much the same. In any case, just like with you, it must definitely have an anti-stress feature!

JohnPepper profile image
JohnPepper in reply toEsperanto

The most important factor is keeping the pulse-rat up to maximum and hold it there for a maximum of one hour. Does anything else chieve this?

Esperanto profile image
Esperanto in reply toJohnPepper

In various sports, you can maintain a high heart rate of 85% for an hour, depending on your fitness level and conditioning. Some examples of these sports are running, swimming, nordic walking, cycling, boxing, HIIT and circuit training.

Personally, I dislike traditional sports and prefer engaging in activities that provide similar effect on your heart rate such as digging (gardening), chopping wood, and hiking in the mountains. These activities not only help you stay active but also allow you to enjoy nature and the outdoors.

JohnPepper profile image
JohnPepper in reply toEsperanto

Can you imagine me, at 89 doing anything other than walking?

Esperanto profile image
Esperanto in reply toJohnPepper

No, but in your next life, you can take up gymnastics and, like Johanna Quaas, do exercises on the parallel bars at the age of 92 !

PD exercice for seniors
JohnPepper profile image
JohnPepper in reply toEsperanto

You miss the point entirely. It is maintaining the high pulse rate for one hour every secondd ay thta doies the trick. It produces GDNF and repairs damaged brain cells.

JohnPepper profile image
JohnPepper in reply toEsperanto

Agreed. But! Can you see me doing any of those?

Esperanto profile image
Esperanto in reply toJohnPepper

You have spent half your life practicing fast-walking and are highly trained in it. I live in the countryside, and indeed, you can see 90-year-olds working in their vegetable gardens and stockpiling firewood. They have been doing it their whole lives and continue doing so until they collapse. 💪

JohnPepper profile image
JohnPepper in reply toEsperanto

There is a big difference between FAST WALKING and farm work or any other type of work. It is the maintained high pulkse rate thegt does the rtrick. Why can't you believe me?

Esperanto profile image
Esperanto in reply toJohnPepper

This CP forum is also there to try to broaden our field of vision and open you up to new PD insights. I understand that you don’t feel like it anymore, but it’s necessary to move forward. You could have read that there are more methods then fast walking to increase your GDNF level in the article pdpatient recently posted:

The 32 Best Ways to Increase GDNF

February 4, 2024 Jordan Fallis

optimallivingdynamics.com/b...

While fast walking remains a valuable form of exercise for PD patients, it is essential to keep an open mind and explore alternative methods to potentially increase GDNF levels. High-intensity interval training, mind-body practices, dietary considerations, and non-invasive brain stimulation techniques are just a few examples of areas that warrant further investigation. By embracing a multidimensional approach to PD management, we can continue to expand our understanding and uncover new insights that may contribute to improved outcomes for individuals living with PD.

JohnPepper profile image
JohnPepper in reply toJohnPepper

If you can stand up and you are able to put all your weight on one leg and stick the other leg out in front of you , then you can walk!

Parkie1 profile image
Parkie1 in reply toJohnPepper

I've been dx PD 5 years, but HD symptoms for 20ish years. In wear off I find it difficult to stand, but I can often walk for 2 or more hours. I also do horse riding every week. John's story inspired me to keep up the regular exercise, which is" included" in my prescription according to my consultant and PD nurse. A strange old thing is Parkinson's!

JohnPepper profile image
JohnPepper in reply toParkie1

The thing to remember about PD is that it affects the subconscious brain. We can consciously do things with no problems but when it comes to memory, things get a bit difficult.

We control most actions subconsciously. So, get used to doing things consciously!

Siep profile image
Siep in reply toJohnPepper

Hi JohnWat is your diet do you take special food.

Grts Siep

From Holland

JohnPepper profile image
JohnPepper in reply toSiep

I eat a very balanced diet! I eat alot of vegetables and not a lot of meat. I try to avoid a lot of starchy food to avoid putting on too much weight!

1rocketman profile image
1rocketman

So sorry you are dealing with this on your own. I can't begin to imagine the difficulty you are having with no support. As the caregiver in my situation, I know how lucky your brothers are to have you!

Gymsack profile image
Gymsack

I have made changes to my medication availability. From the beginning I could get at least a 30 minute warning that I should start considering taking a dose of CD/LD and if I let it go too long than all I needed to do was sit quietly for 10 minutes while my brain made some of my own dopamine and then I could move enough to find my pills on the kitchen table .

My neurologist said that he thinks that now my brain is no longer making any dopamine . I have shortened the time between doses of CD/LD to 3 hours and that seems good enough for now but will need to be shortened in time or strength increased again soon. The biggest problem is that there now is no warning that I need to take medication. The bottom falls out and I am frozen and everything hurts when I try to move especially in the middle of the night .

I am using "ALEXA" to give me a reminder every 3 hours ,works well when I am in the house but I am looking for a watch or something that can be set to remind every three hours or can be set with at least 8 reminders and has an alarm that I can hear. I have constant noise in my head already full of smoke alarms and fire trucks and girls screaming so high pitch alarms do not cut it. I may have to obtain and carry a cell phone. I have a glass of water and some CD/LD on my bed headboard that I can reach ,some emergency LD in my wife's purse and I am looking for new medication dose containers that I can carry.

Good luck , try to be happy

You probably will not be a satisfactory care giver to your brothers and you will need a care giver yourself ,, admit it and make changes while you can. Time to find help now.

shaken-not-stirred profile image
shaken-not-stirred in reply toGymsack

Hi Gymsack I am not sure of where you are and what would be available - I bought my pwp a pill minder that you can set 8 alarms - Tabtime 3in x 2in with an alarm that is hard to miss - he carries his meds for the day and the alarm in a small canvas purse that can go on your belt - his meds case has 5 compartments with plenty of room for all your meds for the day ( can buy these at a chemist ( drugstore) and small enough to fit into the purse as well. Hope this helps you.

Gymsack profile image
Gymsack in reply toshaken-not-stirred

Thank you

I have ordered a Tabtime Super 8 Pill Timer Reminder from the Parkinsons society of Ontario . It has 8 compartments and 8 alarms per day that can be set once and will repeat every day and has much louder alarms at 80 db.

I previously owned one of the proto types but it had 4 compartment and 4 alarms that were inaudible. Getting it from the Ont. PD Society cost me $ 25.00 Cdn instead of the $80.00 others want.

I had forgotten about them

thank you

donate.parkinson.ca/site/Do...

JohnPepper profile image
JohnPepper

Hi michelagvolpe. Have you tried to do FAST WALKING? If so, did it work for you?

michelagvolpe profile image
michelagvolpe in reply toJohnPepper

I do swimming, cycling, running, fast walking, dance..... maybe they help..

JohnPepper profile image
JohnPepper

Hi The objective is to produce more GDNF in the brain, which reverses the PD.

fast walking has been shown in tests done by th Mayo Clinic to be the best exrcise to achieve this.

Do you need any more evidence?

Gioc profile image
Gioc

Hi michelagvolpe,

In this situation I am using a product based on melevodopa, commercial name Sirio.

Melevodopa is a type of levodopa that dissolves in water and its absorption should be faster.

If your body does not store enough dopamine, your symptoms will follow the levodopa cycle in the blood, so it is important to quickly restore its level.

There are other methods to speed up the absorption of Madopar or C/L, one of which involves acidifying the stomach with water and vinegar when taking levodopa to promote its emptying.

Everyone has their own method, what matters is knowing that the sooner you restore the level of levodopa in the blood , the sooner the symptoms and the related e usual dramatization, that we all have, will cease,

it's always like that!

Gretting from Italy, Como lake

Pinus pinea

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