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SeanK

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Well I got the call last night w/ the results of my DAT Scan...  Doctor says, without a doubt, it's Parkinson's.  It seems I caught it early thanks, in large part, to people posting their experiences online.  It started with an occasional thumb twitch on my left hand around April 2015, then I noticed my arm is a little slower on that side to do things early last year.  That's pretty much where I stand today.

 

I'm 35 with two young boys, a wonderful wife, and a busy career.  The uncertainty of how this will impact all of that is the most unnerving part.  Perhaps it hasn't really hit me, or perhaps I adjusted during the diagnosis period for this outcome, because I remain oddly calm.  I guess I remain wildly (irrationally?) optimistic that treatment options (or better) will improve fast than the disease progresses.

 

I'm sure in the coming weeks I'll have many questions and hope to turn to all of you for advice.  For now, I'd love to hear what you wish you'd known when you were diagnosed.

 

Thanks!

 

S

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Hi Sean,

 

Sorry for the news.  You will likely go through periods of optimism and periods when you feel defeated.  You asked what we wish we had known when diagnosed.  For me, I wish I had known that I would still be doing most everything I did before six years from dx.  I also wish that I had exercised more and remained active both physically and socially.  While I do exercise daily, I generally stay "holed-up" and avoid leaving the house as much as possible.  Your work, children and youth will likely keep you moving and engaged and this will help you to remain independent for a very long time.  Best of luck - I hope you stay connected here.  Gardener

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Hi SeanK,

 

What Gardener says is absolutely true...good days and bad days.  I was diagnosed at 33 years of age (15 years ago).  I am 48 now, am married, and have two active kids (12 and 9 years of age).  While this is a progressive disease, don't lose heart or perspective.  Everyone's journey with PD is different; however, the likelihood is that you will have many, many more years of good functioning.  When I was diagnosed back in 2001, my symptoms were so minor, the whole diagnosis didn't really have a negative impact on me at that point or, honestly, for quite a few years into the diagnosis.  Finding the "right" medication combination was key, as was educating myself on what to expect.  It is amazing how much progress has been made with treatment options over the past 15 years.  I was on 6 medications until 2015, when I switched to the Duopa infusion pump.  It has been amazing.  While it's no fun getting the PD diagnosis, at least now you have a name for your symptoms...there is no "unknown".  Sometimes that is a relief in and of itself.  Keep doing what you are doing and don't let it overwhelm you.  I know...easier said than done!  Know that we are all here for support and encouragement as you need it.  Lean on us...

 

Peace and blessings,

 

Mihai (Michael)

Edited by Mihai
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Hi Sean,

 

Sorry for the news.  You will likely go through periods of optimism and periods when you feel defeated.  You asked what we wish we had known when diagnosed.  For me, I wish I had known that I would still be doing most everything I did before six years from dx.  I also wish that I had exercised more and remained active both physically and socially.  While I do exercise daily, I generally stay "holed-up" and avoid leaving the house as much as possible.  Your work, children and youth will likely keep you moving and engaged and this will help you to remain independent for a very long time.  Best of luck - I hope you stay connected here.  Gardener

 

Thank you, Gardener.  That's really comforting.

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Hi SeanK,

 

What Gardener says is absolutely true...good days and bad days.  I was diagnosed at 33 years of age (15 years ago).  I am 48 now, am married, and have two active kids (12 and 9 years of age).  While this is a progressive disease, don't lose heart or perspective.  Everyone's journey with PD is different; however, the likelihood is that you will have many, many more years of good functioning.  When I was diagnosed back in 2001, my symptoms were so minor, the whole diagnosis didn't really have a negative impact on me at that point or, honestly, for quite a few years into the diagnosis.  Finding the "right" medication combination was key, as was educating myself on what to expect.  It is amazing how much progress has been made with treatment options over the past 15 years.  I was on 6 medications until 2015, when I switched to the Duopa infusion pump.  It has been amazing.  While it's no fun getting the PD diagnosis, at least now you have a name for your symptoms...there is no "unknown".  Sometimes that is a relief in and of itself.  Keep doing what you are doing and don't let it overwhelm you.  I know...easier said than done!  Know that we are all here for support and encouragement as you need it.  Lean on us...

 

Peace and blessings,

 

Mihai (Michael)

 

Thank you, Mihai!  :-)

 

Can I ask... you mentioned at the beginning symptoms were quite mild.  Did you hold off on medication?  I'm due to speak w/ my doctor about our plan next week.  Trying to learn as much as I can in advance.

 

Thank you!  Sean

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Hey Sean,

 

I did start on medication immediately.  I know there are various opinions about that nowadays.  Some recommend starting immediately while others say to hold off due to the potential future side effects of the medications (such as dyskinesias, which I do have).  Talk to your doctor about the pros and cons of each approach.  My advice is if the symptoms are problematic enough, use the medications...they will improve quality of life.  I don't remember ever discussing that issue when I was diagnosed.  I just went ahead and began the meds.  There are many meds available that support Sinemet (Carbidopa/Levodopa) in various ways, so the bigger issue beyond WHEN to begin meds is usually WHICH meds!  Hope that helps!

 

Keep in touch,

 

Mihai

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Welcome Sean,

 

I guess we are heading the same journey but I am about 10 yrs older than you. I had similar symptoms in 2015 plus left hand cramp and diagnosed 2016. I am doing ok, nothing change. Emotionally  I am feeling  better, somewhat accepting PD after 9 months

 

I have been doing exercise almost daily  at home and pushing myself to continue even I have two kids, full time job, full time wife :-),

 

I will see my MDS , 3rd visit again in 2 weeks. Likely will no need medication base on mild symptoms I have. I have been told the progression is very slow, so be positive ( struggling with this)  and exercise is the key for general health  well-being that we can do.

 

Good luck.

Edited by pinkdaisy

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Sean,

 

Welcome to the club you never wanted to join. Half the battle is knowing what you are fighting. The good news is now you know. I was diagnosed at the same age as you. I held off on meds, partly because I needed time to research and partly because I was trying to find a good Movement Disorder Specialist.

 

Thankfully I live in a suburb of Rochester NY and we have The University of Rochester Medical center. There I found a study I could join called Steady PDIII. This study is the final testing for a drug called Isradipine. The belief is this drug will slow progression of the disease. Because I had not taken any PD meds and I had a positive DATScan I was accepted into the study. The wait time to start PD meds was six months. This study also introduced me to DR.Richard. My current MDS.  

 

After the 6 month waiting period we talked and decided to start with Azilect. This helped a little. I was less stiff and my mood was much better. After that we added Cardopa/Levodopa. My MDS and I both are of the mind set that dyskinesias are caused by disease progression and not Levodopa. I can say that with my current meds, I have not had many issues and no side effects. I function just fine and lately (even with all the political BS) I have been the happiest I have ever been.

 

My best advice is, research as much as you can, ask everyone their experience, then discuss with you family and Dr. what the best action should be. Keep moving, keep working and get a good support team.

 

Life isn't over, it is just different than you thought it would be.

 

Blessing and good luck

Ask any question you would like.

Adam

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By the time I was diagnosed, it was good news.  However, I wish I had paid attention to the grievance process, because it still applied to me.  Also, I wish I had really understood how dangerous agonists were for me.  I just had a DBS installed and I have a lot of optimism for the future.  I have 4 kids and my wife, and they are all supportive.  Just take the lowest medication you need. 

 

It is not a death sentence and there a lot of ways to manage it for the rest of your life, or until a cure comes along.

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Welcome! Wish you didn't need this group, but hope you stick around.

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Hi Sean,

I'm a newbie here as well although I've had symptoms for two years after sudden onset.  I would consider seeing if there is a good naturopath in your area.   I am lucky to be near one of the best naturopathic universities in the US.  I have gotten very good symptom control with glutathione injections and there is a thought that they might slow progression.  I would also consider having genetic testing done.  I just found out I am positive with the LRRK2 mutations and there are some drugs getting close to drug trials that may be able to slow or prevent progression for folks with this mutation.  It doesn't hurt that one of the google founders has this mutation and has donated 50 million to studying ways to stop the disease.  And as mentioned before, daily exercise makes such a difference, esp with music.

best wishes,

Lena

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Hi Sean, I was diagnosed in 2007 and because the progression of my condition was so slow I only started on medication in 2012 - Sinemet 25/100 twice daily and that's the dosage I'm still on. This is my view (not advice, I'm not qualified): as there is no drug that will slow down or halt the progression of Parkinson's, there is no need to start taking medication untilwe have reached the stage that it is interfering with our quality of life or is preventing us from doing something we have to do or want to do. Then medication can make a crucial difference in our lives, as others on this forum will confirm. The reason why I advocate delaying medication is that you will then be delaying the onset of the side-effects of the medication.

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My neurologist that I spoke to first and also who diagnosed me, said he wanted to wait on medication till I could not function mainly because of side effects to the medication. He wanted to see me every six months. Meanwhile we moved so I just waited without the doc visits. I was diagnosed Dec. 2006. Started medication Oct. 2011. During this five year span I did show side effects. But I cooped with them. Side effects of the PD I mean. This was just my experience. When I did start meds it helped me to keep functioning. 

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Hi Sean,

 

I was in a similar place as you about a year ago (I'm 34, have 2 kids and busy career as well), so I'll tell you the things I wish someone told me back then.   For perspective, I'm on meds now, and would agree with others that the better questions is not when to start but what to start. 

 

There are several things I wish I knew:

 

1.  Often times you will hear concerns about dyskinesia, sleep attacks, fatigue, nausea, etc with the meds.  You will also hear about impulse control disorders (IDC's), but because of their embarrassing nature, they are under-reported and under-discussed.  Don't fall for that - like me, you are a young male, which puts you in a high risk category for ICD's.  Be aware that if you develop one, you may not realize it until it has really caused some problems.  When I started meds, I remember a pharmacist mentioning ICD's to me, so I thought "OK I'll keep an eye out for that".  I wish I had realized that "keeping an eye out for it" is nowhere near enough.

 

2.  I felt oddly calm at first too.  There were then some moments where I felt like it hit me suddenly, especially when I noticed a symptom getting worse.  Don't let it bother you too much - the slow progression gives you plenty of time to learn to adapt - and you will adapt.  Also don't worry if the experience is not what you expected - it's different for everyone.

 

3.  When the time comes for sinemet, getting it dialed in can be a tricky endeavor.  There are many formulations, schedules, interactions, etc.  Be patient and you will get it right.

 

4.  If your wife says "why are you mad at me" when you are perfectly happy and fine, you may have some facial masking going on.  When you tell your wife she is going deaf, it's probably your voice :-)

 

5.  Try to get in the habit now of keeping walkways clear of toys / junk (and if they already are, I am very jealous of you).  It took me a while to realize just how much this was bothering me in my place with the kids.  (not to mention that it becomes a hazard as well).

 

that's all for now, I'm sure I'll think of more later

Ed

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Hey Sean,

my 2 cents? Start on Azilect now. There is more than a suspicion that it can slow the progression of PD, but they just can't emphatically STATE it. All 3 of the highly respected MDS drs I have seen have said that THEY believe it slows the progression. That's good enough for me.

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Hi S,

 

I was Dx this past May right before my 40th birthday in August. Looking back I wish I knew that though the initial Dx brings tons of different emotions it doesn't change who I am. I am a mother of 2 young boys, working part time as a cognitive behavioral therapist (never knew how handy that would be in my own life!) a wife, friend, sister, daughter & so on...and none of that has changed! I'm sure the future will have its rocking times but one day at a time. Many of the others above speak to progression and how it's different for everyone and often slow...that's a true story & one to keep in mind.

 

Hope that helps...

Take care

Melissa

 

Ps...I am on Azilect, only that as of now, as mentioned above bc my MDS believes in the research about it slowing progression. I've tolerated it well, no notable side effects

Edited by Minna76
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Hey Sean,

 

How's it going?  Any updates?  

 

Just wondering...

 

Mihai

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Sean,

 

I was very recently right where you are now. Dx'd last March at 30. Father of a 3 year old, getting my career moving, planning for future, all that stuff. 

 

Two suggestions simply based on my experience.

 

Enjoy the lack of your response. Just be a normal guy and enjoy whatever is going on around you. There will be times (lately for me) where the full reality of this disease smacks in you in face and you cannot shake the inescapable thoughts of your future and what it may or may not include. This comes and goes, and thankfully it stays gone more often than not. It's my belief that the human mind isn't capable of feelings of grief this immense, so it disperses the grieving process into short busrts of sadness and then shuts back down to allow us to continue to function. My suggestion is to allow that process to occur however it may. Let yourself be sad on the days where it hits home (when you bawl watching a commercial for an allergy medicine, simply because the father danced with his daughter at her wedding) and don't fight the feelings aware. You need to feel sad sometimes. The days that its gone, take notice of the amazing parts of your life and the happiness that's in it. I have been so much more aware and able to immerse myself in the good things I have, and its a powerful thing to take note of.

 

Now that was all hippie, psychological feel good stuff.  My second suggestion is the opposite. Work...the...f@ck....out. Change your schedule, go to a gym, buy weights, get a second hand treadmill and binge watch madmen in your basement while you run. Anything. Make your body work. Even if you already work out not...work.....the...f@ck...out...more...The ONLY thing that has been clinically established to slow down the progression of this disease is exercise. No offense to a lot of the older people on here, but Y.O.P.D. patients (like you and me) have a great opportunity to use our body to fight this disease. I'm not saying it'll fix anything, I'm not even saying it won't actually kind of suck, BUT its like putting money into 401k. You don't want to put it away when you could use it to buy something shiny, but you have it now, and it'll be worth even more if you build upon it, so don't wait.

 

Also, if there's any local support groups around you. Try 'em out. There a very real benefit to talking about this stuff, these feelings, these fears and these pains to empathetic and not sympathetic ears.

 

Sorry you had to find this forum, but welcome.

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Sean,

Sorry to welcome you to the class of 2017.  I'm 2016.  Realistically as young onset, you know about as much as most of medical science does about you.  There are 1800-2400 YO cases in the US every year.  We are all snowflakes, no two alike. No progression is exactly like anyone else's.  Just generalized trends.

 

Find a MDS you can communicate with, and that takes your concerns seriously!  Mine is a royal pain in the ass.  I"m about to fire him because he told me my side effects (which are horrendous) are all in my head.  Well, they are but not in the way he'd like to believe.  The "hysterical woman" diagnosis that most YOPD women get even after the PD is common.  Side effects are very real!!! 

 

Do not let anyone dismiss your opinion about your treatment.  Until the MDS sticks their head into the DBS frame and has it cranked on for real, their opinion is in third place behind mine and my husbands.  It's shockingly easy for glib advice to roll off the tongue without real empathy for the consequences, even with an MDS!   (In my case, you don't loose 25 pounds of fat and muscle off of a 145 pound body because it's "all in your head". And, I've been cleared by the head of the neuropsychiatric section as not crazy, or manifesting this loss through starvation.)

 

I'd get the genetic testing done to see if it's a known variant or true idiopathic.  23 and me does free genome mapping of PD patients, but you'll need a genetic counselor to read it.

 

Exercise!!

 

Get nutritional testing done to see if your deficient in anything- most PD are vitamin D deficient, which impacts a whole ton of metabolic processes.

 

I work in Financial Services:

Welcome to Retirement Planning 600 and Estate Planning 400.  (You skipped undergraduate work by virtue of a chronic illness, LOL.  Time to get your MBA.) FIND A QUALIFIED FINANCIAL ADVISOR and an ESTATE PLANNING ATTORNEY who works with chronic illness.

 

Find a qualified employment attorney and learn what is and isn't legal in your state, and decide how much you share to ANYONE connected to you staying employed.  This unique for all of us.  PD is not universally covered under ADA- what you share can and will be held against you by most employers especially as young onset.  The likelihood of dementia is ultra low for us but is common in older onset.  Someone looks up the wrong kind of PD, see's dementia, makes a wild assumption and watch discrimination happen. For me, it will kick me out of the industry so I keep my trap shut.

 

Welcome to Budgeting 201- be thoughtful about your spending and saving habits, and how that ties into the future if you can't work. 

 

Life Insurance is still easily obtainable, but the price just went up.  Do not delay in getting the biggest policy you can realistically afford.  Term Life Insurance is fine, but only if you can convert to a permanent policy in the future without evidence of insurability. It can be a god send down the road for planning options. 

 

Get a HUGE Life policy on your wife, bigger than you think you need. 

 

You are now no longer insurable for individually underwritten long term care policies.  The only way you can now get it is if your employer offers a group plan, and has automatic enrollment into the plan.  Seriously consider working for companies that offer it as a group benefit- the US Government, Deloitte, Accenture, RGP, Grant Thornton.  There are others, seek them out.

 

Continue to live life, have goals and dreams!!!

Waywrd1

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 I guess I'm going to be known as the dancing exercise lady.  My MDS recommended the Argentine Tango so my husband and I tried to find a teacher and quickly realized that it's difficult to start with the AT so we started ballroom lessons.  We have worked our way up to the AT after 2 years.  My kids are thoroughly amazed that their dad does this---he was not a dancer at all.  Now we go out and look ok busting a move on the dance floor.  Anyway, I completely forget that I have PD when we are dancing.  It's been one positive thing that has come out of my PD.  

 

Also, execise....I do the PWR (Parkinson Wellness Recovery) program.  I highly recommend it.  All exercise is great, but PD specific is even better.  www.PWR4life.org and lots of videos on youtube....The Brian Grant Foundation is also an exercise oriented online resource...stay away from the internet rabbit holes...only look at positive posts!

 

I have realized that life will be different but it can still be great.  

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