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Meriban

Boy am I new to this

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56 year old male, in great physical shape, despite the tremor in my right hand....I just got done fighting cancer for the last 5 years...I got one year off of, no maladies, and then....Wham...last Tuesday...oh btw...you have parkinson's disease...the neurologist at Mayo did the DAT Scan, blood tests, neurological tests...the works, and he points to the area on the scans where the brain is diminished and said...that, right there is how we can tell it is Parkinson's .  I asked him about toxins being the cause and he said that my blood test ruled that out...So, now what the heck do I do....Stay physically fit...maintain my vegetarian life style...seriously?  At this point I am sick of challenges...I am on Ropinirole and I don't sleep well at all, I have a constant headache, I have no appetite, I feel lethargic and bummed. CBD Oil really helps...I don't drink alcohol, don't smoke, don't do any drugs, besides the Ropinirole...The funny thing was, the only advice I got from the Neurologist was take the 2 mils for two weeks and if it works well, we will leave the dosage there...If I need more, double the dose and we will leave it there...Then he said "see you in 4 months"...really....That's all you got...No workout program? dietary program, best practices, support?  See you in 4 months indeed.

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Welcome to the club none of us wanted to join!

 

Is your doc a general neurologist, or a Movement Disorder Specialist (MDS)?  If you don't like the care you are getting from him then look for a different doc, and if you can find an MDS you like that is likely your best bet.

 

For now your best bet is to stay physically fit.  Exercise is the one thing proven to help slow progression.  As far as drugs go, I would give the medication at least 2 weeks, maybe 3-4 weeks before you pass judgement, unless you start to experience serious problems like impulsive behaviors, or experience sleep attacks.  I don't think there is any dietary regime that has legit data to back up any benefits for PD.  Some people like a Mediterranean style diet.  Others like Paleo, others like the See Food diet.  Eat what you like in moderation and with a focus on general well being.  Since you state you are veterinarian I'd only caution to make sure you are getting all the protein your body needs, and all the amino acids.  It can certainly be done as a vegetarian but it's not as easy as when meat is included.

 

For a new diagnosis I'd have expected to have a follow up after 1 month to see how things are going, and if well, then stretch it out to 4 months.  Right now I'm on 6 month intervals unless something comes up that I need to be seen sooner for.

 

FWIW, the DaTscan is not definitive in the sense that it cannot distinguish between PD and PD+ syndromes.  It is not, unto itself, diagnostic for PD.  Its main value is to differentiate PD from Essential Tremor and other causes of PD-like symptoms.  There are toxins known (and others strongly thought) to cause PD.  Pesticides are the main culprits, but the defoliant Agent Orange that was used so much in Vietnam is also one.  Just because none show up in a blood test now doesn't mean there was some past exposure that set you down this path.  But that blood test does mean that you can't just eliminate some current exposure to obtain relief.

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You are in the right place on these forums.  Agree with just about everything stump put out there.  Attitude critical.  Being in good shape a plus.

Switch to an MDS if possible if you don't have one.  Learn all you can about PD and be an "informed consumer" with your caregivers. There are some very educational fact sheets at www.pdf.org as well as this website.

For me I have found that the disease progression on the physical movement side is on a different track than the mental cognitive side and it differs per individual of course.  The drug equation requires periodic attention in terms of what your take as well as strength and frequency/interval.  I did not need any drugs for first year at age 60 with a right hand tremor like yourself and have progressed from there over 4 years.  There are some good discussions about meds on both the doctor and pharmacy sections of this websites forums.  Every new drug introduced to me was carefully titrated up to the desired dosage.

You are a cancer survivor and will deal with PD head-on and well I think once you get your bearings on this!  Hang in there!

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Hi Meriban,

Welcome to the forum!  It sucks that you've been battling cancer and now have PD.  However, if you've had a 5 year battle with cancer and won, PD should be a breeze!  Unfortunately, doctors in the USA are little more than drug pushers.  Go to the doctor  ---  get a pill.  Have any problem --- the doctor will push a pill.

PD is an incurable, progressive, degenerative disease.  It can not be cured or modified by a pill.  There is not yet a pill that can even slow the progression of the disease, although there is at least one promising Phase III trial underway right now.  The only thing shown to slow the progression of PD is exercise.  If your doctor didn't discuss the importance of exercise with you, I'd find another MDS (movement disorder specialist). 

I'm about your age and like you had a serious disease (Late Stage Lyme Disease) before being diagnosed with PD.  Like you, my neurologist didn't say a word about exercise or anything else that might be beneficial.  I fired him and found a doctor that knows that exercise is better than any pill.  My MDS didn't push any pills on me and in fact doesn't recommend medication until really needed.

I have observed that there are two kinds of people when it comes to dealing with a serious disease.  The first kind is devastated by the diagnoses; goes into a huge depression; and sits on the couch waiting to die.  The second kind (people like you) declare war on the disease; gets moving with exercise; and continues with life as normal.  You are a winner!  KEEP FIGHTING AND KEEP MOVING!

 

 

 

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Ditto to all of the above. Exercise is one thing everyone agrees is beneficial. I kept a journal in the beginning to help sort out how I was tolerating meds. 

An MDS you like and trust is important as well. 

Keep moving! 

 

LAD

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I am lucky that my first doc was very optimistic and told me of exercise  benefits and programs available. He gave me lots of hope with treatment and exercise plans.  Being in my 40s, it was something I was carrying around for years already and I was pretty frustrated.   I recommend keeping the meds at the lowest dose you are comfortable with. My first MDS asked me if I was where I wanted to be.  I was satisfied where I was, but didn't exactly have everything perfect.  SO, she pushed more meds on me, and I took it as prescribed.  It was great first, but mental stability worsened and I am now working on tapering off.  I get programmed for my DBS Friday.  So, I hope that will help me taper off as much as possible.  This PD medication is helpful, but can be dangerous if not taken carefully. 

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I am lucky that my first doc was very optimistic and told me of exercise  benefits and programs available. He gave me lots of hope with treatment and exercise plans.  Being in my 40s, it was something I was carrying around for years already and I was pretty frustrated.   I recommend keeping the meds at the lowest dose you are comfortable with. My first MDS asked me if I was where I wanted to be.  I was satisfied where I was, but didn't exactly have everything perfect.  SO, she pushed more meds on me, and I took it as prescribed.  It was great first, but mental stability worsened and I am now working on tapering off.  I get programmed for my DBS Friday.  So, I hope that will help me taper off as much as possible.  This PD medication is helpful, but can be dangerous if not taken carefully. 

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Thanks for the responses, I appreciate the support.  I called Power 4 Life in Tucson, and will go spend 3 days with them in December to learn the exercises.  My Dr at Mayo is a Movement Specialist, and he was thrilled that I am persuing the exercise program.  What do you all think about Ropinirol as opposed to other meds? i.e side effects?  When I take the med and use CBD Oil, my tremor nearly disappears...Which thrills me.  I ride motorcycles and often my hand/arm shakes like a leaf...So it is great to have a little relief from the tremors.

Edited by Meriban

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Symptoms started 2015

Officially diagnosed With Parkinson's disease Oct 10, 2017

56 Y.O. Male From Phoenix AZ

Tremors on Right Side

Very Active Life Style

Mentor for Youth in Foster Homes as a Volunteer

Ride Motorcycles

Do Yoga and Meditate as well.

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17 hours ago, Meriban said:

Thanks for the responses, I appreciate the support.  I called Power 4 Life in Tucson, and will go spend 3 days with them in December to learn the exercises.  My Dr at Mayo is a Movement Specialist, and he was thrilled that I am persuing the exercise program.  What do you all think about Ropinirol as opposed to other meds? i.e side effects?  When I take the med and use CBD Oil, my tremor nearly disappears...Which thrills me.  I ride motorcycles and often my hand/arm shakes like a leaf...So it is great to have a little relief from the tremors.

I do the PWR program.... love it 

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On 10/17/2017 at 6:07 AM, PatriotM said:

Hi Meriban,

Welcome to the forum!  It sucks that you've been battling cancer and now have PD.  However, if you've had a 5 year battle with cancer and won, PD should be a breeze!  Unfortunately, doctors in the USA are little more than drug pushers.  Go to the doctor  ---  get a pill.  Have any problem --- the doctor will push a pill.

PD is an incurable, progressive, degenerative disease.  It can not be cured or modified by a pill.  There is not yet a pill that can even slow the progression of the disease, although there is at least one promising Phase III trial underway right now.  The only thing shown to slow the progression of PD is exercise.  If your doctor didn't discuss the importance of exercise with you, I'd find another MDS (movement disorder specialist). 

I'm about your age and like you had a serious disease (Late Stage Lyme Disease) before being diagnosed with PD.  Like you, my neurologist didn't say a word about exercise or anything else that might be beneficial.  I fired him and found a doctor that knows that exercise is better than any pill.  My MDS didn't push any pills on me and in fact doesn't recommend medication until really needed.

I have observed that there are two kinds of people when it comes to dealing with a serious disease.  The first kind is devastated by the diagnoses; goes into a huge depression; and sits on the couch waiting to die.  The second kind (people like you) declare war on the disease; gets moving with exercise; and continues with life as normal.  You are a winner!  KEEP FIGHTING AND KEEP MOVING!

 

 

 

There's a saying that it's okay to rest for the moment but never give up, you may succeed with next blow. Exercise, exercise, exercise. What ever type that works for you. Low impact stretching to high aerobic running. It's amazing how much better you feel after exercising. I agree PM.

In the interim of waiting on what next to do. There are valuable exercise videos on You Tube. Just type in Parkinson's Exercise and go from there. A good starting point is the B.I.G. program which is supported by the docs. It gets you to kind of over exaggerate movements like walking, stretching, etc.

You definitely need to be dealing with a MDS if it works out for you. I guess there are also neurologists that have interests or background in PD among other things. I haven't been to one. Just sharing the information that they exist.

As was told to me from the beginning.....it's not curable.....but it's manageable. I think I'm in my 3rd year after diagnosis and that saying is holding true.

It's unsettling when you're first told. But after you learn more about it and deal with the symptoms, life goes on! 

Sometimes its a day at a time, other times...... its time to be looking forward to something, a week out, a month out, etc......what ever it takes to change your perspective and keeps you going.

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7 hours ago, papa57 said:

There's a saying that it's okay to rest for the moment but never give up, you may succeed with next blow. Exercise, exercise, exercise. What ever type that works for you. Low impact stretching to high aerobic running. It's amazing how much better you feel after exercising. I agree PM.

In the interim of waiting on what next to do. There are valuable exercise videos on You Tube. Just type in Parkinson's Exercise and go from there. A good starting point is the B.I.G. program which is supported by the docs. It gets you to kind of over exaggerate movements like walking, stretching, etc.

You definitely need to be dealing with a MDS if it works out for you. I guess there are also neurologists that have interests or background in PD among other things. I haven't been to one. Just sharing the information that they exist.

As was told to me from the beginning.....it's not curable.....but it's manageable. I think I'm in my 3rd year after diagnosis and that saying is holding true.

It's unsettling when you're first told. But after you learn more about it and deal with the symptoms, life goes on! 

Sometimes its a day at a time, other times...... its time to be looking forward to something, a week out, a month out, etc......what ever it takes to change your perspective and keeps you going.

Nice! Happy to see you are doing well and encouraging others! 

 

LAD

 

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I guess I am still in the "oh hell no" stage.  After reading so much about the disease, I got even more bummed.  It is hard getting my head around the idea that, the pills just treat symptoms, not cure it.  Is it wise to do clinical trials, especially ones were unproven medication can be so detrimental to health?  I want to wrap all the info about the disease, what can I expect?  Are there maladies I can expect at certain points? What condition I can expect my body to be in, in ten years?  It seems so capricious, that there are no hard and fast rules.  So, honestly...The only consistent answer seems to be...It is a degenerative neurological disease...Results vary. 

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Just be careful of what you read, and reading into it. It's very easy to think the worst. There's a lot of support out there. You'll find your way.

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I had a difficult time with the fact the pills don't cure either.  For 50 years whenever I was ill or had a pain I either took a pill, or was prescribed a prescription to take for a limited time and then could expect to be better when they were gone.  I can't explain how I felt taking one the first time knowing it was the first of many for life.  Now that I'm used to the idea my mindset has changed and I take them with the attitude that they are helping me.  You eventually let go of the ingrained idea of pill equals cure.   

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I guess I never thought of pills as a cure.  As a consequence I always resisted taking anything, at least for any longer that absolutely necessary.  

 

That said, I rarely miss a dose of PD meds.  I don't resist taking them at all either.  Mostly because I feel so, I guess normal when take them that I know right away when I didn't.  

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There are MANY diseases that aren't cured but are WELL CONTROLLED thru medication. That is what I'm hoping for for my near future. Not some pie in the sky CURE....just control it indefinitely (until maybe a cure can be found). Like diabetes and insulin.

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