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Jared Koch

Advice on Physician selection and treatment options & support for YOPD

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Hello, first post for me as I recently have overcome the "denial" phase and am "coming out" about my diagnosis I received as a 36 year old man, almost 3 years ago. My first symptoms showed up as a small tremor in my left index finger and an overwhelming feeling of anxiety. I chalked it up to the affects from an unwanted marital separation and stresses of losing my wife and the ensuing divorce litigation and custody battle of our 1 year old daughter. Those things have since stabilized, but my PD has not. The small tremor has now taken over my left arm and shows itself on my right side occasionally as well. I move noticeably slower and have trouble with little things like typing, tying my shoes, eating, etc.

 

I initially visited 2 doctors in my hometown, Springfield, IL. Since I was in denial, I felt almost offended that they both immediately wanted to put me on medication, as though they were driven by the pharmaceutical companies. I reluctantly started Azilect, only in hopes that it would hide my tremors. After about 3 months I didn't feel much difference and decided to stop it and find another physician. I found a God-sent Angel of a doctor, Dr Dyveke Pratt, in Peoria, IL. who did not push medication on me and instead prescribed cardio exercise, healthy diet, and less stressors in life. As symptoms progressed, we did decide to try Mirapex, to which I did not see relief. Admittedly, I am not a good prescription pill taker and probably did not give it a true test. Upon that realization, Dr. Pratt and I decided to once again eliminate medication. She prescribed me with 6 months of daily physical exercise, getting my heart rate above 130bpm for 30 minutes, every day. It's been 3 months and I haven't missed a day. I'm in great physical shape, but my tremors have gotten worse, and symptoms are progressing.

 

Now I find out that Dr. Pratt is leaving the INI practice and I have no inclination of where she is going. I feel that medication is in my near future but am scared to death of it. I do not want to start Carbidopa/Levodopa, not yet. If that's the "big gun", I want to wait until I can't live without it.

 

So, I'm in search of a physician in or near Central Illinois, and am open to any thoughts, advice, experiences, or questions from anyone listening...

 

Thank you 

Edited by Jared

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Don't be so scared of meds. It's fine to want to minimize them, but t they have their place, especially since you are no longer able to control the symptoms with exercise.

 

I started on C/L right away due to concerns over the agonists. You're not really saving yourself anything by waiting to use it. If you develop dyskinesia due to it that will probably happen about the same time if you start taking it now vs in another few years. And if you start taking it now you'll get that much longer with improved quality of life.

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Many prominent neurologists and MDS's believe that you should only take PD meds when they become necessary.  My MDS is one that believes this.  Like you, I am a little over 3 years since diagnosis and I do not take any PD meds.  I tried Mirapex for a few months until my fatigue got so bad that I was falling asleep at stop lights.  I quit taking it before I got killed in an accident (thanks to Mirapex).

 

Now, I take medical marijuana for my tremor, urinary urgency, fatigue, difficulty sleeping, and to provide a sense of well-being.  It is working great for me and I haven't had any side effects.  I see you're from Illinois and I'm guessing they have medical marijuana there.  You might want to give it a try.

Edited by PatriotM
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Look for a Movement Disorder Specialist.  Link

 

At 36 I can understand you wanting to hold off on levodopa.  It is a fantastic medication, but under forty is more likely to experience

dyskensia (aka involuntary movements).   As you approach 70, it is very unlikely to experience dyskensia.  

 

Do get a copy of "The New Parkinson's Disease Treatment Book" by Dr. J. Eric Ahlskog. 2015 Edition.  He does a fantastic job of listing each medication and why he recommends it.  For YOPD taking our gold standards of Levodopa (Sinemet) brings a hih risk of dyskensia after 5 years of treatment, compared to someone starting medication at 70. 

 

Exercise, Diet, and getting a good nights sleep are all key.  I finally got to the point where I seemed like I was drunk in the afternoons, so

medication is fantastic.   

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Jared,

 

Just forgot to say that your doctor is correct - exercise is the best medicine for PD and is the only thing that has been shown to slow the progression of PD.

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I have been diagnosed for about 18 months or so and stayed on C/L CR immediately after my Sinemet challenge. I agree with Stump, don't be afraid of using meds. The studies I have read say that it is disease progression and the higher dose of C/L required to address the symptoms rather than the time taking C/L.C/L does not stop working, but rather your brain keeps loosing dopamine cells. Other studies show better UPDRS scores over time for those taking C/L vs those delaying meds. I chose to take meds and feel better now and continue to work. I know that I could not have continued to work like I have without C/L. I was already exercising quite a bit when I was diagnosed.

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Jared,

 

You need to do what's best for you. I agree with SWVA in regards to C/L (Carbidopa/Levadopa). I also agree with Patriot that excercise is very beneficial. I was already exercising regularly when I was diagnosed 3 years ago. I tried Mirapex prior to my official diagnosis but it may me so tired I could not function at my job. I tried Azilect as a monotherapy shortly after my dx but discontinued it's use within a couple of weeks because I didn't notice any changes. I started on C/L roughly 2 years ago and added Azilect later after I participated in a study in how Azilect can aid in the cognitive decline I've experienced with Parkinson's. I switched to Rytary last year as it gives me longer "ON" periods. Do what you think is necessary to maintain the best quality of life you can. As the disease progresses, it's going to rob that quality. I for one wish to protect my quality for as long as I can.

 

Good luck.

 

Dave

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Welcome, Jared! You've done yourself a huge favor by coming out of the PD closet. Many forum members are willing to share their experiences & feelings. It certainly helps to know you're not alone.

 

See an MDS for the best treatment options. There is a list on this website.

 

Exercise is definitely key, particularly vigorous/high-intensity exercise. I love Rock Steady Boxing. Tai Chi is good for balance & range of motion.

 

As far as medication, that can take some time to properly tweak. Be patient, educate yourself through reputable sources, ask lots of questions, & listen to your body. Remember that there are options in all the drug classes, so just because one doesn't work doesn't mean another one won't. From what I have read, tremor is difficult to control with medication. You might want to give medical marijuana a try; at least keep tabs on it's research, as it looks very promising. It's only a matter of time before it's legal every state. It's on the Florida ballot (for the second time) this November.

Edited by secret squirrel

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Welcome,

 

Like you I was diagnosed in my 30's. I was 35 to be exact. I waited about a year to start with meds. My MDS and I had a long discussion and we started with Azelict. After about 3 weeks I noticed that some of the stiffness in my legs

let up and my mood was much better. Since it did not cover all my symptoms we started with Carbidopa/Levodopa

25/100mg. This made all the difference in the world. I felt 10 years younger. I was able to exercise more and keep

working.

 

I did a ton of research and I could find no solid research that stated starting C/L earlier or later would make a

difference. The latest research done by independent labs (not associated with big pharma) shows that it is disease

progression that causes dyskinesia to start. For ease lets say at year 10 after diagnosis you would progress far enough to have dyskinesia when taking C/L. If you wait 5 years then you only get 5 years of feeling good. If you start

now you could get 10 years of feeling good.

 

This is the research I found and my MDS who is on the MJF foundations board and a researcher in a major research institution agrees.

 

Good luck and make the best decision for you. Exercise is key but if you cant move to exercise then you won't get

much benefit.

 

Blessings

Adam

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Welcome,

 

Like you I was diagnosed in my 30's. I was 35 to be exact. I waited about a year to start with meds. My MDS and I had a long discussion and we started with Azelict. After about 3 weeks I noticed that some of the stiffness in my legs

let up and my mood was much better. Since it did not cover all my symptoms we started with Carbidopa/Levodopa

25/100mg. This made all the difference in the world. I felt 10 years younger. I was able to exercise more and keep

working.

 

I did a ton of research and I could find no solid research that stated starting C/L earlier or later would make a

difference. The latest research done by independent labs (not associated with big pharma) shows that it is disease

progression that causes dyskinesia to start. For ease lets say at year 10 after diagnosis you would progress far enough to have dyskinesia when taking C/L. If you wait 5 years then you only get 5 years of feeling good. If you start

now you could get 10 years of feeling good.

 

This is the research I found and my MDS who is on the MJF foundations board and a researcher in a major research institution agrees.

 

Good luck and make the best decision for you. Exercise is key but if you cant move to exercise then you won't get

much benefit.

 

Blessings

Adam

 

Hi, Adam.  This is very helpful.  Thanks for posting.  So does this mean that it's okay to keep upping the C/L as symptoms get worse?  According to what you are saying, yes.  So would it be correct to say to definitely up the dose (with doctor's oversight) to as much as symptoms need?  This has really been so confusing to me.

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Linda,

 

With in the last few months I saw Dr. Okun post that you can go upwards of 2000mg C/L although rare and hardly done.

He did mention that there is no max Level. As long as dyskinesia are not an issue and everything is working well then he would prescribe more if needed.

 

Most of the patients he has seen, by the time they are above 1000mg Levodopa a day they have progressed to a point

where dyskinesia is a problem and he looks at DBS or other alternatives.

 

Hope this helps

Blessings

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I am at 1,100mg  per day now.  I don't have bothersome dyskinesia issues.  I have some mild in the left leg/foot, but that has been there on other doses.  I do take amantadine along with it; which can reduce dyskinesia.

 

I still have off periods that can interrupt the day, so I am looking into DBS to see if it can be any better.

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Yet another opinion !

I hesitated  to add my “two euros worth”, but being among (if not )the most senior  in this Guild of persons  diagnosed with Parkinson’s (diagnosis April 1987  at age 34), I thought I could share my experience.  At the time I was diagnosed there was no Internet, the patients associations were in their infancy and you could only rely on your neurologist.  Information was scarce and what you read in inevitably outdated encyclopedia was not really encouraging. I was lucky enough to  find a wonderful neuro, with excellent bedside manners (I love this phrase) who took time to discuss my options.  I decided I would not waste my still young years being miserable with a shaky hand and took  right away Levodopa (Madopar), which enabled me to enjoy a “honeymoon” period of 3 to 4 years.  It gave me time to consider having a baby, who was born 26 December 1992.   Pregnancy did bring about some worsening of symptoms, although the link between the two is hypothetical.  Anyway, in 2000, I had deep brain surgery in Grenoble , France (where DBS was first initiated) and I am still around and doing relatively well after all these years. I never look back so I never tried to imagine what would have been my path had I delayed taking Ldopa. Exercise is certainly a good thing and this opinion is shared worldwide.  But when you have a full time job and a family, it is most difficult for a Parkinsonian mother  with a young child at home, to find time, and foremost energy, for a daily or even twice weekly hour of exercise.   Everybody tries to defend their own vision and experience. !  You have now to make your opinion.

Good luck and keep us posted

Mireille

Edited by MIMILASTER
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I was diagnosed a year and a half ago at age 44. I started C/L right away as I didn't want my symptoms causing issues with my job. (Which they were at the time) I am glad I did. I felt so much better after starting Sinemet! I decided to live for today and not worry about what may or may NOT be down the road. Just my thoughts and opinion. Like others have said, it's up to you!

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Linda,

 

With in the last few months I saw Dr. Okun post that you can go upwards of 2000mg C/L although rare and hardly done.

He did mention that there is no max Level. As long as dyskinesia are not an issue and everything is working well then he would prescribe more if needed.

 

Most of the patients he has seen, by the time they are above 1000mg Levodopa a day they have progressed to a point

where dyskinesia is a problem and he looks at DBS or other alternatives.

 

Hope this helps

Blessings

 

Thanks, Adam.  I saw my MDS yesterday, and he added one more dose of 50/200 sinemet a day and said that the belief has changed about not going above 1,000.  I'll be right at 1,000 with this added dose.  My concern also was about the potential dyskinesia that may happen, but like many others I have decided to do what is needed to maintain a good quality of life and then accept that I'll deal with the future when it comes, whatever it may bring.

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