Newly Diagnosed with PD

[RS313]

hello everyone,

i am newly diagnosed with PD and just looking for support and ideas of how to slow the progression looking for positive people please

[bassofspades]

Hello, sorry to hear about your recent diagnosis. The good news is you came to the right place for advice. This site has a lot of good people who have tried it all.

I was first diagnosed 3 years ago, and at first I got worse, but in the last 6 months I have been getting better. Here's what I do, works for me, cant guarantee it will for everyone -

1. Try Mannitol clinicrowd.info/parkinsons/ it supposedly reduces the misfolded proteins that make up the alpha synuclean clumps that are said to be the source of your dopamine-producing brain cells dying off. Sign up for the trial and get mannitol on Amazon.com.

2. good quality grass fed Whey Protein Isolate daily. Source of important BCCA's that you need to supplement and fuel dopamine production in whats left of your brain's Substantia Nigra area.

3.Isradipine. A calcium channel blocker. 10mg, 2x day. Currently in phase III clinical trials, protects the substantia nigra cells from calcium buidup and instead they use their sodium channels to conduct activity. michaeljfox.org/foundation/...

Good luck! beware of sinemet. dovepress.com/parkinsonrsqu...

[Astra7 in reply to bassofspades]

How is the mannitol working for you?

Also I tried to read the sinamet article but it was over my head. what's the problem with it?

Tnx

[Xenos in reply to bassofspades]

Thanks, Bassofspades.

I will see my cardiologist and hopefully switch to Isradipine.

Mannitol seems to work for me. I'm in the CliniCrowd trial.

[park_bear in reply to bassofspades]

What do you do to mitigate the gas and flatulence caused by mannitol?

[bassofspades in reply to park_bear]

thats a problem! I just back off on the amount. I hear that Beano works, but I have not tried it. I can tell you that Mylicon (simethicone) does not work for flatulence here!

What does Mannitol do? Still not 100% sure its doing anything, but it is said to clear the misfolded alpha synuclean plaques. Most people report a return of smell sense and softening of facial expression. I can concur with that. I think its a very long term therapy. Also, I read that the supplement PQQ helps activate a gene (DJ-1) that isresponsible for these plaques forming. So PQQ + Mannitol should technincally erase that problem, and hopefully healing and neuroplasticity take over.

One more thing I forgot to mention is EXCERCISE helps heal the brain. Aerobic, fast walking, biking, etc.

[Beckey in reply to bassofspades]

So bassofspades, you never took any of the C/L drugs?

What is your dose on each of these three items? And how many times a day do you take them?

Thanks.

[bassofspades in reply to Beckey]

Hi Becky,

I took sinemet for 6-8 weeks, then I read this dovepress.com/parkinsonrsqu...

and decided that I do not ever want uncontrollable dyskinesia, I'll find a natural treatment.

so, I take NOW Dopa Mucuna, 2 capsules in the morning, along with NOW EGCG, 1 capsule, a large Fish Oil, and a capsule that has 100mg COQ-10 and 20mg PQQ. 15ml of Mannitol, which is probably not enough as I am 235 Lbs, 6' 2", but any more and I get horrible gas and diarrhea. 40 grams whey protein powder mid morning. all of the above is once per day. 10mg Isradipine twice per day, which is said to have neuroprotective benefits and is a mild BP med.

I hit the gym twice a week, hard, but i think I should exercise more, just always so damn pooped! My job also drains my adrenaline ( Cardiac Cath Lab tech)

There is still much to learn. Im discovering new information every day.

[faridaro in reply to bassofspades]

Thank you for the article. Will be looking into thiols - anybody have information on those?

[Beckey]

Hi, Robyn, and welcome. The magic bullet is -- exercise! Studies have shown that vigorous, regular exercise can slow the progression. I believe there are some folks in this very group who have burned up the track so intensely they have been able to decrease their meds. Cycling, swimming, crossfit training -- whatever you enjoy. I joined Rock Steady Boxing -- it's for us parkies, and it's a blast. They have participating gyms in many, many cities. Check it out: rocksteadyboxing.org.

[Astra7]

Azilect is helpful. It may slow progression and also helps with some symptoms although my neuro said it wouldn't. It particularly helped me with fatigue.

Other than that there are probably a hundred supplements etc that people take and it's very confusing to know what will help you! I'm a big fan of magnesium and NAC and have been taking those since diagnosis a year ago. I'm going ok most of the time. I also play tennis as much as I can. I'm 53.

Welcome.

[GymBag]

Exercise (a lot more than you think, really a lot more, many kinds)

Regular and strict Routine (meds , food, sleep, bowl movements, etc )

Close watch on non-motion symptoms : dry eyes, dry mouth, dry skin, sleep , swallowing, constipation, depression, keep it all under control.

Keep your weight down, stop smoking, have a beer or a glass of wine , go dancing, have a nap mid day, stop worrying about stuff that you can not do anything about, remove stress, plan for the future, eat out once in a while, put more beads on that necklace.

Try and be happy, remove stressful elements, people, locations, jobs, etc and enjoy what you have. Remember to go easy on caregivers and family. No whining ,complaining, or being grumpy or demanding but make sure they understand things are changing.

Oh one more. See a professional , a neurologist that is also a Movement Disorder Specialist and do what they say. If they prescribe medicine, take it .

[Beckey in reply to GymBag]

"If they prescribe medicine, take it." Fair enough! My question is, how long do you hang in there with meds that make you feel uncomfortable?

The doc started me on amantidine a few days ago. Today, I fell four times, kept nodding off, couldn't ever remember what I was talking about, and in short, felt unpleasantly stoned. Maybe it just takes a couple weeks to acclimate ... ?

[GymBag in reply to Beckey]

I would maybe ease into it a bit. Probably the last thing he said to you was "any problems contact his office" and if he did not ,he should have. I started all my meds slowly, small doses gradually increased. Are you taking liquid or capsule ? Capsule is the usual and is more gradual release but is in very short supply and a lot of people including me are taking the liquid form because it is all that is available and having some problems with it.

[Motherfather]

hello my new pd friend sorry to hear that. well my advise is first of all exercise any type will do walking making sure you swing your arms as they can get a bit stiff if you dont..well im not a believer in sinemet as it sent me to hospital for 5 days but then some people think its good.so maybe try it and see.i also use a small massage machine i bought from china ill send u what it is for.im using it now on my feet.its good cost you maybe 20 or 30 dollars from china u can use it all over your body.i also like the azilect i take 1 per day along with 3 madopar 250/50 not sure if u can buy it there im from australia..you will find things happening to you as you go along.they are just things that will happen to you but it happens to lots of us just go to your doctor he will give you things to take..ok dont worry we are all here to help u as best as we can..good luck.john.

[Motherfather]

youtu.be/kyVj0jryq5g(Not working as expected?)

[Motherfather]

youtu.be/iUqeSFEbOrY(Not working as expected?)

[heidi1]

Exercise! I am certified in Delay the Disease. Find a personal trainer near you who has background in Parkinson's or find a class. The people in my class are really bonding and were actually talking about starting their own support group!

My one on one clients have really delayed or sometimes reversed their symptoms. It's all about practicing perfect movement.

[carpark]

Hi Robyn, I am also newly diagnosed. It is scary to say the least. I've found this group very helpful and continue learning more every time I am on here. Being informed and feeling like you have some control helps a lot. I'm still trying to sort through it all and figure out what will work for me.

[Lionore]

Hi Robyn,

Welcome. None of us asked to be here, but we are a supportive, kind and funny group!

I can attest that I have learned a lot from others here about nutrition, supplements and the importance of exercise. Exercise for me is my job, seven days a week. There are a number of programs for PD, LSVT BIG, which I did, needs a referral for PT and OT from your neurologist, Rock Steady Boxing which will soon become available at my gym, Delay the Disease, classes and book/DVD, Parkinsons Dance, and others. Walking is great, just about any exercise is incredibly beneficial. I try to mix it up, aerobics one day, yoga another, workout with gym equipment another, and use music to keep moving. Try to relax, simplify your life, get sufficient rest, take breaks as needed. You are your own best advocate and everyone is different. You need to speak up if your doctor prescribes medication that causes unpleasant side effects. I take rasagiline only and hope to avoid needing more meds as long as possible but will accept them when it's time.

[RS313 in reply to Lionore]

thanks so much..luckily for me i work in homecare/hospice so i have access to PT/OT/ all therapies which have given some exercises and stretching as well.the key here seems to be staying mobile and up till now i have never been in the gym much but that will change as i want to do good or better anyway

[park_bear]

Qigong made a dramatic difference for me. My story here: healthunlocked.com/parkinso...

[Lionore in reply to park_bear]

Park-bear, I take two qigong classes a week. My teacher incorporates spirituality into the movements. It helps me let go of my ego, concern about my story line, and connect to the Universal Energy/chi. The classes are 85 minutes long and I have to sit here and there.

[FluteReed]

Unfortunately there is no known way to slow progression regardless of what any reply says to the contrary. Their comments on diet and exercise though should all be looked at. Either trust your doctor or get a different one. If you trust your doctor with the diagnosis why wouldn't you trust your doctor with treatments?

[park_bear in reply to FluteReed]

"The clinical study showed significantly increased DAT binding in the caudate and putamen (mean increase ranging from 4.4% to 7.8%; p<0.05 for all values) in the PD group treated with NAC, and no measurable changes in the control group."journals.plos.org/plosone/a...

IOW, NAC is helpful and may slow progression.

MDs are propagandized to believe that prescription meds only cause adverse effects very rarely and that non-prescription substances are useless. Nothing could be further from the truth:

"A striking feature of modern medicine is the debilitating and lethal consequences of adverse drug reactions (ADRs), which rank as one of the top 10 causes of death and illness in the developed world

"With an estimated 2 to 4 million serious injuries each year, drug therapy stands as one of the most significant perils to health resulting from human activity.

"833,076 adverse drug events reported to the U.S. Food and Drug Administration during 2014. …Although drug adverse effects are estimated to account for 100,000 to 200,000 patient deaths and 1 to 2 million hospitalizations each year

"[O]ne in every five [new drugs] eventually caused enough serious harm in patients to warrant a severe warning or withdrawal from the market"

tinyurl.com/zvgcu79

MDs do the best they can for patients within the constraints of their belief systems. Moreover, MDs do not even agree among themselves as to the safety and efficacy of various PD meds. On this forum we have a number of very well read and experienced patient experts who give generously of their time and knowledge. So there are plenty of good reasons to consult and participate in this forum.

[hairdresser1]

Hi RobynS

Diagnosed with Parkie in 2010, Tried lots of different things to keep moving, friend asked if I would like to do kick boxing tried it NOT FOR ME ! went line dancing this helped me quite a lot. But best thing was when I took up TAI CHI everything about it helps, movements mesmerizing slow, breathing correctly, calmness, balance, yes! it is a form of martial art, but my tutor teachers Tai Chi mostly for health. If you decide to take this art form up do find the right teacher not one who just wants to teach it as a martial art.

[Hamish]

Exercise, I was diagnosed 8 years ago age 48 , I joined a gym 1 year ago ,try to go 4 times a week I feel the best since diagnosed..so please exercise in any way that works for you

[RS313 in reply to Hamish]

that seems to be the key here.. wow 8 yrs and you feel better now than ever>?

i pray that i have the same results i will def be adding some exercise to my weekly routine

[RS313]

Thank you everyone for the support and for all the great ideas looks like exercise is the key the doctor has me on Sinemet kind of makes me feel loopy at first doesn't help with the tremers much but I haven't been taking it long I'm going to be watching all of the responses on here and definitely try some of them exercises number one

[vasilli]

The illness effects everyone differently but keep taking your meds and excerise daily and allow yourself to rest when you need it. I know you be there for your Granddaughter.

[MrPK]

RobynS

I was diagnosed in 2008 after 2 brain scans . I remember the neuro who made the diagnosis and his words were , I told you that you might have PD! I could never remember what he said during the diagnosis, but it seemed obvious to me that there was something wrong as I had suffered with a L Hand tremor for about a year! Anyway,the neuro told me at the diagnosis that I had about 15 years of useful life left and gave me a sinemet/plus script to pick up from the chemist and told me to take 1 a day and make an appointment to see him after 1 year.

I thought at that time that 1 tablet a day was easy, i could do the 15 years on my head and some. I made an appointment to see a different neuro the following year as nothing had changed and but he picked up that I had lost the tremor so this PD was going south as I was going north!!

Carry on taking the 1 sinemet no problems. This situation rolled on for 5 years and I clearly thought that this PD battle was going to be fight that I was going to win easily.

One day in my GP Surgery I mentioned that I didn't think much of the treatment for PD (I visit to the neuro/ year and 1 sinemet /day) seemed too easy to be true. she then said that there was a 3 monthly clinic that I should register with so they could keep track of me, etc.!!???

This was a BIG MISTAKE ! The first neuro that I saw at the first clinic I went to decided that I was undermedicated and i remember coming out that day with a script for the whole chemists' shop. I remember that day clearly as the worst decision I had ever made !

[VonnyM]

I was diagnosed this week. I'm looking for the same