Stories

Alex Revised

You Can Do Anything

Diagnosed at 45

Hi my name is Alex Shepard and was diagnosed with PD at age 45, in 2009. Everything started one day when I was working out at the gym, doing shoulders and boxing. I felt a twitch on my shoulder, and couldn't lift anything with my left arm, but then that same arm started getting numb, so I ended up going to the doctor after feeling stiffness (rigidity), slower walking (bradykinesia), problems with my writing (micrographia), lack of arm swing on my right side when walking, and problems with my fine motor skills, to the point were I stopped working out for complete. Then I had severe pain (dystonia) between my shoulder blades and into the base of my neck.

So I had 6 months of Acupuncture treatment and took away the pain between my shoulder blades and my neck. But I still was having problems holding pens and gripping my silverware when eating. Simply trying to cut my meat, was becoming a huge ordeal. After I did blood tests, MRI's and Spinal Tap, to rule out other possibilities, I went to see two neurologists, one so called PD specialist, that was 80 years old, and his exact words were: "well young man I can only think that you have PD, and your going to end up in a wheel chair, so deal with it!" Well thank you very much Doctor. Wow, that wasn't very nice to say... So I saw the second one that really didn't care or had no clue, decided to do a two-week trial dose of Sinemet, he said: take it 3 times a day and if you feel better, then the diagnosis would be confirmed. I was feeling better, but my lack of motion was still not right.

I went on a cruise for a week, and on the ship, all I was thinking about was how miserable I was feeling and just wanted to jump over the board and end what every it was I was had. But on the last day of the trip, a miracle happened! My partner and I were looking at the sunset, my partner wanted a picture of our last day of the cruise... I thought, a picture of me feeling like sh....! So we asked the person next to us if he could take a picture, and he did very kindly. After that he said: "Excuse me but I have been watching you all week long and by the way you handle yourself, I can tell you have been diagnosed with Parkinson's".  He then introduced himself as a Neurologist, and said: "I can see you have PD, but you are not having the right treatment, I would like to help you!" He gave me his card and asked in what state and city I lived in, and that he knew many PD specialists. We were so happy to be there at the right time and the right place, that we all started crying!

When I came back home, I received an e-mail from the doctor I met on the cruise and set up an appointment. He took over 2 hours to look and analyze me and do some small tests, then he prescribed the medication correctly, including different medications and even told me what to avoid regarding food and side effects.

Thank God for my doctor. I am at the lowest dose of Sinemet, Requip, Stalevo and Azilect. I exercise every day for 2 hours, and now I am back at my boxing class and can say very proudly, that I am the fastest guy on the speed bag with coordination and technique, and also have Parkinson's! And there are 20 people in the class.

Madonna said in one of her concerts: "You can do anything"

28 Comments

My father lives in San Diego and has been getting the run around with his PD Doctor. Does your doctor by chance know someone he can recommend to my father in San Diego County? I would greatly appreciate it. He to has a similar story as yours. He seems to be getting worse,fast. He is 62 and was diagnosed 1.5 yrs ago. Thank you for your time and I am happy to hear you are doing much better :)

K.B., Mar 14, 2012

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I have a great Parkinson's doctor in San Diego. Her name is Dr. Irene Oh at North County Neurology. She is attentive & will spend as much time as you need addressing your concerns and questions.

Marisa Davis, Mar 17, 2012

First paragraph and half of second, sounds almost exactly how everything started for me, was working out regularly then started having issues with weight training and leg buckling, shoulder pain, stiff neck etc. After 3 years, 4 neurologist, misdiagnosis of Myasthenia Gravis, and scares of other even "worse" diseases, I finally got the PD label for all my stuff.
Anyway, before I got diagnosis, I thought I was crazy, thought it was all in my head and tried to wake up everyday refusing to have symptoms...that didn't work, good thing we finally found good docs and Sinemet!

Jeff, Mar 15, 2012

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It is really nice that people with PD can continue a normal life. But you also bring up the reality with the healthcare here in the US, where they have to make the numbers.

My wife was diagnosed 6 years ago and being Asian she feels more comfortable with chinese medicine vs western medicine. Sadly, all the eastern medicine and techniques we tried failed.

I work out of town and she is home with our two dogs for stretches of time, being alone is causing a lot of stress which I feels weakens the sinemet. If you doctor friend know of any caring doctor in the Portland, OR area, it would help. We go to OHSU which is a top notch facility but sometimes we feel like a number iso a patient.

JN, Apr 1, 2012

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JN, I hope this message find you well. I have PD and am Asian. I would like to share my progress of living with PD with your wife. I have a tremor on right hand and leg. I was diagnosed two years ago and am not taking any medication. I hope we can comparing notes on the side effects and changes we see in ourselves. My e-mail address is no.fax@hotmail.com.

"My wife was diagnosed 6 years ago and being Asian she feels more comfortable with chinese medicine vs western medicine. Sadly, all the eastern medicine and techniques we tried failed."

Michelle, Jun 28, 2012

I have seen multiple neurologists in PD and the only one to talk with me, listen to me and to help me has been Dr Nutt at OHSU-- even the other neurologists there are of no comparison. He is the best! He is often unavailable due to seeing many patients but put yourself on the list. He moved my case forward and he really listened to me, good luck my friend, it's a challenge that we have been given to be stronger better people than we were before.

JOHN MOLENAAR, Jan 29, 2014

I HAD THE SAME EXPERIENCE MY FIRST MD SAID:"u HAVE A CRYSTAL BALL OF HOW YOUR LIFE WILL BE WHERE MOST PEOPLE DON'T" THEN HE PROCEEDED TO PUT ME ON SINEMENT, NEEDLESS TO SAY THAT WAS MY FIRST AND LAST VISIT WITH HIM. WE FOUND A MOVEMENT SPECIALIST (MOST IMPORTANTLY HE AND STAFF WERE/ARE VERY COMPASSIONENT (CHARLOTTE NC) WHICH HAS MADE ALL OF DIFFERENCE TO ME AND MY SPOUSE. HIGHLY RECOMMEND THEM: DR AYERS MD AND DR DANIELLE ENGLERT MD

stephan, Apr 2, 2012

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I am also in Charlotte, NC and the proud patient of Dr. Sanjay Iyer and his wonderful staff. I am 50 years old, and was first diagnosed in February of 2010 by a general Neurologist who, unfortunately was not up to speed on PD and because of that I suffered much longer than necessary before getting the right treatment. I had my first symptoms begin about January of 2007, when I had a personal trainer coming to my home and suddenly found I could not lift my weight on my right leg on to a step. There simply was no strength. We thought at first that it was muscle fatigue, but of course, in the back of my mind, I knew better. As my symptoms progressed I had months of assorted pain, cognitive impairment, tremor in my right hand, an impaired ability to write legibly, etc. The pain and stiffness in my neck was excruciating, and I shudder to think how much otc meds I took trying to relieve it. I had expensive and unnecessary surgery on my right arm to correct the tremor I was told by one doctor was caused by a trapped nerve. I think I was so exhausted and frightened that when I was told it was Parkinson's Disease, I was actually a bit relieved! At least my enemy had a name, and now I could begin to educate myself and my loved ones on PD. Over the years I have learned two things I would like to share. The first is this: WE MUST BE OUR OWN ADVOCATE! If ANYONE in the medical community doesn't show you respect and compassion, if they do not listen to you and your unique situation, hit the door and don't stop looking until you find the right caregiver. I have had amazing care from Dr. Iyer and his nurse, Ms. Cashdollar, and I have had piss-poor care after flying across the country to the fancy Mayo Clinic. My point is to make yourself the head of your "team", which is my second point: SEEK OUT AND RECRUIT FOR YOURSELF THE BEST CARE 'TEAM' THAT YOU CAN FIND! For me, that has meant being blessed with a life-saving, compassionate, optimistic therapist (one who understands much of what I am up against, as she lost her beloved father to PD) several fabulous massage therapists who bring me SUCH pain and stress relief, a pharmacist who takes the time to explain about medication interactions, insurance issues, etc., and who has gone out of his way numerous times to find my the medication I needed when it was hard to find, and of course my Movement Disorder Specialist (thank you, Michael J Fox for that tip) Dr. Iyer, who is active in our community, lecturing, promoting awareness, funding dance and yoga classes, and never fails to instill a sense of hope when I seem to have lost mine. Do not settle for anything less than LOVING, SUPPORTIVE, EDUCATED, COMPASSIONATE CARE. And do the next folks waiting to be diagnosed a favor. When you get a slap in the face from some ignorant doctor upon receiving this devastating diagnosis or feel that your care is not up to par, write a letter to their superior. Take the time to post like we do here. It helps. It helped me. Thank you all:

Susan, Apr 21, 2012

In Charlotte, NC. Diagnosed one year ago. Should I see Dr. Iyer or Dr. Englert?

Katie, Jun 17, 2014

I am also in Charlotte and see Dr. Englert. She's wonderful! I had seen another neurologist who mis-diagnosed me with Essential Tremor and then when I got worse, proceeded to treat me like it was all in my head. Which it was, considering the source of Parkinson's. So I ended up with Dr. Englert after researching local doctors who specialize in Parkinson's.

Never settle for an answer you know is not right, or remain with a doctor who talks at/over you and not to you.

Shannon, Apr 6, 2012

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I had similar doctor experiences and I am now back to wrestling. We should get together for a workout?

Albert, Apr 7, 2012

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This article provide many tips. Very useful to me. Thanks a lot ?

Connie C. Khan, Apr 17, 2012

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Thanks for the link to John's blog, Trevor. I've added it to my side bar, as I know how important blogs like his were to me when I was disgaoned with Parkinson's.His newest post is about the fear of Dementia - something both my husband and I have to deal with, as we both had Alzheimer's parents.

Ngoc, Apr 27, 2012

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I had a similar situation with the first neurologist. Please anyone reading this , find a movement disorder specialist. The pd patients I know locally don't want to travel, but it can make all the difference. I go to Cleveland Clinic in Ohio, and it has made life so much better.

Carol, Jun 17, 2012

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Thank you all for your comments! We can make our lives easy if we share all our stories. The most important thing is to exercise. Exercise, exercise, exercise! You can jump, box weights, yoga, aerobics, etc. but keep your body moving. Also massage help a lot. God bless you all!

Alex, Jul 10, 2012

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My first time viewing this website and this blog has been very eye-opening. When I was first diagnosed, a close relative told me that neurologists would dread their appointments with me because I would just be another PD patient with no hope and multiple disabilities - how depressing was that? I am working very hard to stay healthy and stay hopeful, but some days it is very hard. My neurologist has no nursing staff and seems to think that a 15-minute appt every 6 months suffices for treatment. I would appreciate more stories of good PD docs, especially in DC - Baltimore area.

Molly, Aug 10, 2012

Hi Molly,

If you decide you would like to see another neurologist,we have an Information & Referral Center in Baltimore and they would be happy to refer you to someone who specializes in Parkinson's disease. The coordinators name is Ileen and she can be reached at 800-862-5457.

To find the full list of APDA I&R Centers, visit the "How We Can Help" section of our website.

APDA National Young Onset Center, Aug 10, 2012

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I will say up front that I have NOT been diagnosed with PD or YOPD.
I am 22 years old, and after being asked if I had PD, started doing research. I did not realize that this could actually affect someone my age.
I am currently trying to find a good neurologist who might be willing to talk to and consult with in the Fort Worth, Texas area.
Does anyone know of a good one here? Thanks in advance.

Chase, Nov 18, 2012

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Hi Chase,

The APDA has an Information & Referral center in Dallas, TX and they would be happy to give you information about local Movement Disorder Specialists (a neurologist who specializes in Parkinson's disease). The coordinator's name in Dallas is Rachelle Caruthers, and she can be reached at 214-345-4224.

APDA Young Onset Center, Nov 19, 2012

I'm terribly sorry for your condition, but am happy to hear you have overcome those feelings of impending doom. Right now 5 years later I'm still dealing with my issues and of course over the years I've developed more. I've seen so many neurologists and they all said it was essential tremors. Well a year ago I was at the neurologist again, this time because in the last two years I've developed what they told me was micrographia and told me to change the way in which I hold my pen when I write, even increased my beta blocker I take for my blood pressure thinking that would help and of course it didn't. My neurologist then had two MRI's and an MRA done on me last year to determine if I had a tumor only to find out my vertebral artery was tortuous, but still no answer. I even saw another neurologist who specializes in headaches Sara Sacco and nothing I was given helped so I still have migraines almost every day. My original neurologist had me see a neurosurgeon who only said there was nothing he could do, but he recommended I see a neurologist that specializes in movement disorders. By this point I was tired of all the dr appts so I gave up. I work as a pharmacy tech part time and happened to speak to a former neurologist who is now retired who happens to be one of my customers and he told me it sounds like YOPD and he was the only person who had brought that up in the last 5 years, but also said that it's such a rarely diagnosed disorder because there's not enough research so most dr's are hesitant to diagnose it. Well in the last six months, I have had the most annoying pain in my neck that feels like I'm trying to hold my head up with a cement block tied around my neck and then pain in my joints like my elbow and knees not only to mention when I walk I feel my knees shake and tremble as if I'm weak and when I walk down stairs anywhere, I grab the railing and have to watch my feet because I keep feeling like I'm gonna fall. My writing cramps are still difficult to deal with and my tremors have now referred to my head as well. The funniest thing is my eye twitching and what's funny about it is its been happening for the last two weeks and it happens every 6 minutes and lasting only about 30 seconds. Now I'm not sure if that has anything to do with anything, but it's out of the blue. The worst of all that I'm having problems with is memory. I forget things that I ate for lunch just a few hours before and my memory and speech problem have now affected me more than ever because I feel like I'm going stupid or insane. What makes me feel more insane is when my family and friends look at me when I tell them everyday that I'm miserable not feeling well and all the other symptoms and all they say is that I just have anxiety causing all these symptoms so they think I'm manifesting it all. I'm glad I read your story though because it's made me hopeful for an answer finally. Good luck to you and hope you continue to do well.

Alexander, Dec 6, 2012

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I have had extraordinary result with vigorous exercise, even amazing my neurologist. I recovered so dramatically that I began to question the diagnosis and insisted on having the new DatScan which can positively confirm PD. Well, I have it but am doing great.

I am 71 and was diagnosed three years ago. My main symptom was loss of vocal strenght, along with constant fatigue. My first neurologist was a horror: he told me "You have Parkinson's; take these pills, they will give you hallucinations". Period. That was about it. I went for a second opinion and a world of difference: a caring woman who takes all the time I need to listen and explain.

I found an article on the benefits of high speed pedaling on a stationary bike. Google and find it (there are several). The key is you must pedal faster than your comfort level called: "forced exercise". I also go to physical therapy and have learned many great exercises that I do at home. I average 90-120 minutes daily, and have become virtually symptom free. In fact, I was just tested this week at a sophisticated P/T center and my results far exceeded where I was three years ago. Just as another person on this site commented: "exercise, exercise, exercise". It repairs the brain and the body, literally.

Jim, Jan 18, 2013

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In reply to Jim on vigorous exercise.....

I agree 100 PERCENT that "forced exercise" can quiet the PD symptoms.I was dx in 1998 when I was 50. My family doctor sent me to a neurologist for what I was told would be a simple nerve test. The doctor was an old man with a terrible bedside manner. After a quick exam, he said I'll be right back and walked out of the dark exam room for 15 minutes, then came back in and without hesitating said. "You have Parkinson's Disease. You"ll be in a wheelchair in 5 years. There is no cure for Parkinson's but I'll give you some medication that should help."

I was pissed off. No cure, Wheelchair bound in 5 years. I walked out mad as hell and told no one. It was harder because it was the week Michael J Fox came out about his dx with PD. The TV, magazines and tabloids were having a field day with M J Fox's story. Fox The fight of his life." That weeK I learned a lot about PD from the news media an∂ it wasn't pretty nor very accurate.

Well I'm 64 now. Not in a wheelchair I'm still playing basketball, lift weights, swim, yoga,attend qugong classes, bicycle and hike. I've have a new lifestyle of daily exercise and eating smart. I accept that I'm Parkinson's Challenged. It has not been easy, but I'm up for the challenge... .Ask yourself if you are up for the Parkinson's Challenge? Attitude is everything. Get up and get moving.

Exercise. Exercise. Use it or lose it.

Stay Strong Be mindful.

Regards
Lou Modica
San Fernando Valley,
Los Angeles CA

Group Leader
SFV Young Onset and Active PWP Support Group
e-mail valleyYOgroup@yahoo.com

Lou, Feb 23, 2013

I have PD for five years. I was on Sinemet and Azilect for a couple of years, then I read a study on Tai-chi and how this technique improves the condition of PD sufferers. I do not take any medicine now and my symptoms are almost nil. I exercise at the gym every day and receive apitherapy twice a week and reflexology once a week. I try to avoid stressful situations whenever I can and I am leaving a full and productive life.

Juan Luis Daly, Jan 25, 2013

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What locations are the bee stings applied for your apitherapy treatments ?

mick gorospe, Jul 9, 2013

I was dx at 52 and am looking for a good Movement Disorder Specialist or Neurosurgeon in the South Bend, Indiana area? (Norte Dame)

Kathy Rosebrook, Sep 9, 2013

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Hi Kathy, I'm from the same area. I have been Dx'd for 10 years. Seen several neurologists in the area with nearly no help. Muscle contraction in arms legs back neck and jaw. Tremors started in right side but now both. Anxiety and pain thru ought from the muscles. Seems like if I even put my arms above my head, it wears me out like I've been lifting weights. I actually have manganism which is a form of Parkinson's. most of you know that Parkinson's is just a disease named after a man that had this shaking palsy. With Manganism, it basically is Parkinson's with a known cause which is from toxicity from the years I spent welding as an Ironworker. I would like to connect with you since u are also from the Notre dame area. 574-292-3910

Aimee Leed-lucas, Jan 11, 2014

Hi everyone, I hope you are doing well! Just wanted to share something funny that happened to me last weekend.
I went to a pool party where everybody took stuff from their closet to trade, or just give away. What ever was left they would take to Goodwill or Out Of The Closet for donation.
We all started dressing up in different outfits, and made a fun fashion show. One of the girls brought a couple of high heal shoes size 11, we started to play around and she insisted I try the high heal shoes on, I drank a couple of beers (don't like to drink more than that, because it makes me slower than what I already am), so anyway I tried them on, and big surprise! My balance was perfect and I could control the dyskinesia from my feet, perfectly! First I thought it was the beer, but after a couple of hours I tried again and I could walk easier than with my regular tennis shoes... I hate the thought of wearing high heal shoes, but if that is going to control my feet, well I am willing to try, why not! Maybe not girl stiletto shoes, but sure some male high heal shoes...

Alex, Jun 4, 2014

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I went in to see a neurologist for my Dyautonomia and left with an informal diagnosis of young onset pd. I and 47 years old. I was told there is no cure and my symptoms a mild so move on. If I want a formal diagnosis, come bak in 3 months when my Dyautonomia was under control and we could do the DAT Scan. I did, but insurance doesn't cover it and I don't have $2400 laying around. I am looking for a movement specialist for a formal diagnosis. I live in the Bakersfield area and will travel to LA or up north for a good dr. If anyone has any suggestions, I would appreciate it.

Pam Freeman, Jun 17, 2014

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