How to deal with Parkinson's Disease

[Parkage]

I am new here. I was diagosed with Parkinson's on July 10th of this year.Neurogist stated I had had the disease for 2 1/2 to 3 years pior to that undiagnosed. It started with tremors on right hand then with left hand. I was put on APO-Levocarb 25/100 mgCarbidopa/Levodopa, 1 tablet 3 times a day. No other information given to me such as: Is this a high dosage? Is the dosage ever reduced? What should I do to slow progression of disease? If Possible.What foods, etc. to avoid. My grandfather, uncle and possibly my mom had the disease but it was not talked of in any length. Anything I can do to minimize the effects of this disease or slow it down would be appreciated.

[MBAnderson]

Me too. When I was diagnosed, my neurologist said, "There is no cure, there's nothing you can do" and so I did nothing for several years which was a huge mistake. I believe there is a lot you can do and the sooner you start the better.

Spend several hours a day reading this forum. Start with vigorous daily exercise and read all the vitamin B1/thiamine threads. Soon, (about 20 minutes) you will know more than your neurologist (about how to slow the disease.)

[Hidden in reply to MBAnderson]

Can’t say it better.

“Spend several hours a day reading this forum. Start with vigorous daily exercise and read all the vitamin B1/thiamine threads. Soon, (about 20 minutes) you will know more than your neurologist (about how to slow the disease.)”

[Hidden]

Three tabs daily is typical.

Join Facebook group Parkinson’s thiamine hcl

m.facebook.com/groups/23226...

[Hidden]

Exercise your ass off and read this:

hindawi.com/journals/omcl/2...

[JohnPepper]

Hi MalivP. No Pd medication does anything to slow down the progression of Pd. So, in the beginning, the best thing you can do is to start doing fast walking.

My Pd started in 1963, but I was only diagnosed in 1992, I took Sinemet and Synmmetrel for two years and because my condition had continued to get worse I heard about MAO-b inhibitors, which do have the ability to slow dow the progression, so I asked my Neuro to take me off the first two meds and put me on the new one.

At that time I had been going to the gym for 90 minutes, six days of the week and my performance there was continuing to get worse, I decided to stop going to the gym and took up the fast walking, Within four months my performance had started to get better. In 2002 I stopped taking the medication and continued to do the walking. I am Pd-medication free since then and have lived a normal life. I am not tying 86 and am still doing well.

Doctprs from all over the world, without having examined me, have told their patients that I don't have Pd because there is no cure for Pr. I do not claim to be cured, because when I stopped doing the walking, for other heath reasons, My Pd symptoms start to get worse. U have not walked much for the past two years because of heart problems and me tremors are a lot worse now and so are other symptoms, but I have started walking again, even for only one kilometre avery second day.

If you are interested you can look on Youtube and see my videos. you can Google my name or going to Amazon.

Many other people with Pd are doing the walking and turning their lives around and it costs nothing, just a little effort!

[Smittybear7 in reply to JohnPepper]

Great advice! Glad you are doing well!

[MyGolf]

I take Carbodopa/Levidopa 25-100 (2 tablets 3x day every 4 hours. So your on a low dose. My doctors told me to keep moving. I’m a very active person so this is not hard. Walk walk and walk some more, do some resistance weight training. You don’t have to use heavy weights. 3 or 5 lb will work. Or go heavier if you would like.

I still have one glass of wine with dinner and eat what I want.

[Parkage in reply to MyGolf]

Thanks.Your response help me .

[Limpy932]

Welcome to the group. I too was diagnosed this year (March 2). So there you are going along with life & life kicks you in the goolies. What a year this has been. A pandemic and a disease that will change your life. So what have I learned in these seven months? In the beginning, I was reading like a crazy person to find out as much as I could about this disease and to educate myself. And then I found I was becoming depressed reading about all the symptoms of PD. So I stepped away for a while. And then I read a comment that resonated with me. Someone said "don't let someone elses story, become your story". In a nutshell, we are all diagnosed at different ages and stages and will have different symptoms. So we are all not going to suffer all of the symptoms associated with PD. So what have I done since March 2? I contacted Parkinson's Canada and received lots of info and a medic alert bracelet. I joined a local support group (no meetings right now, but once Mr Covid has left, I am looking forward to them), became a Parkinson's volunteer, exercise each day, surround myself with only positive people and let it be known that I am the boss, not PD.

The biggest thing I have learned is that you must educate yourself & take charge. Seven months ago, my neurologist wanted to put me on medication immediately. I told her I was not ready for medication, as for now I currently just have left hand tremors & was worried about the side effects of the drug.. Through others, I learned that you need to deal with a PD specialist. She was not one & only had four patients with PD. She specialized in patients with brain injuries, so I asked to be referred to a specialist. Two months later I was sitting in the office of a MDS. Look at me! Six months ago I had never even heard of a Movement Disorder Specialist. What a difference. I started medication a month ago (Selegiline), at the lowest dose, after the Dr. explained the pros & cons of delaying medication. I am taking one day at a time & trying to stay positive. In these unprecedented times, I know there are people a lot worse off than I am & I know I have a lot to be thankful for. I have support from groups such as this & the PD Facebook group and if on the odd day, I want to shed a tear, that is ok too. Keep smiling. You are stronger than you know.

[MarionP]

Do what Anderson says. Read and make reading about PD your hobby for a while to get up to speed. Read about B1 in this website, there is quite a lot to go through. Excercise.

[alaynedellow]

Yes time is on your side. So educate yourself on your new companion. You will soon know more than your neuro as marc said. Only you know how u feel, what works for you n what u accept. This is a slow disease so learn what you can and then decide on your path. No 2 of us are the same or suffer the same. The meds dont save your life they help you to live so no rush. Become informed n make informed choices with your neuro/ doc etc and stay in touch with us. Gd luck

[Parkage in reply to alaynedellow]

Thanks.

[beehive23]

#1 avoid stress at all costs....#2 sleep no matter what it takes. imo. hang tough.

[Parkage in reply to beehive23]

Thanks. Appreciate the info.