Stories

Phil1

It was the Weirdest Thing

Diagnosed at 46

It was the weirdest thing. At first I thought it was funny as in ha ha and then peculiar. A couple of years later, I did not think it was funny as in ha-ha at all, and so started my life’s journey with PD. 

For four or five years prior to my diagnosis with PD in February, 2010 at the age of 46, I noticed that when I yawned, without fail, my left arm and hand would tremor. I thought it was weird, but I passed it off as strange phenomena. I did not feel the need to get a medical opinion until I attended a family Christmas celebration in 2007. I yawned and tremored in front of my nephew's wife, who at the time, was a third year medical student. In the middle of the kitchen surrounded by family members I decided to tell my "yawn and tremor" story to my niece in-law and to all who would listen. She asked a few questions and performed a reflex test and upper body strength test and advised me that I passed and she had no idea of why I tremor when I yawn. I thought no news was good news, and I really was not too concerned about it anyway. 

Fast forward to early summer 2008, my life partner, Steve, and I decided to take up serious road bike riding to prepare for a 300 mile/four day HIV/AIDS fundraising ride in August. Not being in optimal physical condition and riding with others who were, I needed to push myself to keep up in the training group rides. When I became fatigued and we stopped for a stop sign or a rest stop, I felt the tremor on my left side but now including my left leg and foot. So now I was thinking my glucose levels were low and I was diabetic, I drank too much caffeine, or this tremor is a normal body reaction to physical stress. I bought a glucose tester and monitored my blood sugars for weeks with normal numbers. So I concluded that my biking tremor was my natural response to physical fatigue. As the training season went on and I became more fit, the tremor frequency and severity during rides declined and stopped. My mind was eased. It had to be a normal nervous system thing. In August 2008, Steve and I rode the 300 miles throughout southern Wisconsin over four beautiful days without any tremor at all. My lesson learned was to stay in shape to avoid tremors from fatigue. Phil2

The winter of 2008-09 brought on some new conditions that I did not quite understand. I started to notice that my left hand was slow when I was showering and shampooing my hair. I felt strange as I walked. My left leg felt heavy when I lifted it in a sitting position. My left fingers did not cooperate at the keyboard. Buttoning buttons became awkward. My left pinkie was twitching, and my left hand and arm tremored occasionally when I was not fatigued. Some of the symptoms would come and go but the slow movement was there to stay. 

I decided it was time to get this checked out. In late January 2009, I went to see my GP. He could or would not diagnose anything so he referred me to a neurologist as I expected. I could not get an appointment to see the neurologist until April, so in the meantime, I started researching online. Was it a brain tumor?, Was it MS?, Was it ALS?, Was there too much stress in my life?, Was it PD? Was it another neurologic disease? I spent hours and hours, night after night, reading and sorting out the junk from the reputable information. I was preoccupied and consumed with finding out what was wrong with me. I developed a sneaking suspicion that I had PD. 

On April 20, 2009, I finally had my appointment with the neurologist. I had my list of symptoms and questions all typed up. She asked some questions and conducted the routine neurological exam. She ruled out a brain tumor and ALS to my relief. She explained to me that there were no diagnostic tests to diagnose many neurological diseases (unless I wanted a brain dissection) and that we’d have to monitor the symptoms over time for a diagnosis but PD was a contender. She was not able to make a diagnosis but offered essential tremor as a less serious possibility so she gave me a prescription of a beta blocker for that possibility and sent me on my way with a “ come back in six months and we’ll go from there.” 

During the spring and summer of 2009, the tremor and slow movement on my left side persisted in my normal day to day living routine. Steve and I planned to do the ride again in August so we started to train in earnest in May. During the twelve weeks training season, the tremor reared its ugly head during times of rest after fatiguing. The ride and the first weekend of August quickly arrived along with hot and humid weather. The 2009 ride proved to be much more difficult challenge due to heat, humidity, hills, rain, and wind. Up to the third day of the ride, my symptoms were mild , but on hot, humid, and windy day four, after three days of difficult riding, with sixty miles to go, my tremors presented intermittently while riding. This raised my level of concern and I finished the ride but it certainly was not easy. During the following months, my symptoms of left-side occasional tremor, and slow movement seemed to have stabilized.

My second neurologist appointment was on December 9, 2009. I showed up with my typed list of expanded symptoms and more targeted questions. She conducted the routine exam and asked about the beta blocker medication efficacy. I reported that the meds had little effect on my tremor. She again was not able to make a diagnosis and advised me to and come back in six months. Returning to work that day, I started to notice an even more awkward feeling as I walked and that my left arm was not swinging as I walked. I soon found out others noticed this too. A couple of days later, I was walking down an aisle at work in front of another employee who noticed my gait and asked me if I had a stroke. This shocked me but I explained that I had something going on neurologically and quickly returned to my desk with my mind racing to call my neurologist and report this incident. I was able to talk to the neuro nurse who said she’d report this to the doctor and get back to me. An hour later, the nurse called me back saying the doctor prescribed and ordered Sinemet which I recognized as a dopamine replacement PD drug. So I asked, so does this mean I have PD? She said that “apparently” PD was my diagnosis and that the meds could verify it. I picked up the meds and advised my pharmacist of my trepidation on this drug at age 46. She agreed but I took the meds home and decided not to take them. The next day I informed the nurse I agreed with the diagnosis but was not comfortable with starting the dopamine therapy considering my age and as I researched other alternative drugs for early onset patients. I asked her to make a request for me to the neuro for a referral to the movement disorder clinic at the local teaching hospital/clinic. She obliged and the next day I received a call from the movement disorder clinic to make an appointment. The next available new patient appointment was in five months. I took it but asked to be placed on the cancel list.
As luck would have it, a snow storm hit and caused cancellations in early February and because I live close to the clinic, I was able to get in to see the movement disorder specialist. She conducted the exam, asked me questions, and the diagnosis was confirmed. I expressed my concern about taking levodopa right off the bat and she agreed and discussed my treatment options with me. I decided on a treatment plan and went home to go on with my life.
Over two years have passed and life goes on albeit with a different mindset.

Today, my symptoms are still more of a nuisance than a hindrance, but I know that will change in time. I continue to work and hope to for a long time. Steve and I love to travel and we plan to insert more pins in our world map hanging on the hallway wall for years to come. I do all the things I have always loved to do and PD has offered me more things to love to do. I now have a new hobby to explore and study on a daily basis. I have met many new people who have enriched my life. I now exercise a lot more and participate in a weekly PD exercise class and a PD Zumba dance class. And I’m training for another 300 mile/four day fundraising ride. I am sure there will be more weird things that will come along my way in my future. I just hope that they are more funny than peculiar. I am so grateful for the loving support of my friends and family, especially Steve, my care giving life partner of twenty-three years. They all travel with me on my life’s journey with PD and help make my life more funny as in ha-ha than peculiar.

19 Comments

Thank you

Joanie, Jun 10, 2012

reply

You are a shining example of what a positive attitude can do for your body. You don't quite anything, you find alternatives to keep everything normal. You are more active than an average person. Keep up the fight Phil. People are routing for you!

Kris, Jun 14, 2012

reply

Phil, thanks for sharing your story. It really helped me understand what you have been going through the last 4 - 5 years but more importantly it showed me what a strong and positive person you are. All the best!

CAS, Jun 14, 2012

reply

Phil, you are an inspiration.

Nicky Cross, Jun 14, 2012

reply

Phil, thank you for being an inspiration to all of us! This article gave me additional insight into the disease...but more importantly, how we can manage and control the disease with attitude, perseverence, exercise, and support from family and friends. You are awesome!

Carolyn, Jun 20, 2012

reply

Hey Phil - thanks for sharing! We have always talked about our ups and downs ~ but You being the kind, concerned person you are, shouldn't have to deal with this ~ but then again, you are "that" kind of person that will be strong and fight thru. You always amaze me with all your activities and reaching out to people in need. I just hope we help you just alittle bit here at work get thru some tough days! : )

Janet, Jun 20, 2012

reply

Phil, you are yet another example of extaordinary individuals who have a certain "light" about them when faced with life's proposals. I respect, encourage and see as example your courage and "carry on" attitude. I send you good energy to use should you need it, and of course love to both you and Steve as you both go about your many adventures in this amazing life we have all been given as a gift...

Tim, Jul 8, 2012

reply

Phil,
Thanks for sharing your story. Your positive attitude will be an inspiration to others.
Your ambition to research and learn on a daily basis will help keep you current and also educate .

Keep strong.....you have many family and friends who support you!

Scott L., Jul 8, 2012

reply

I have known Phil for over 25 years and he has always been a man of love, compassion and great kindness, now I can add strength and inspiration.

Joe W, Jul 8, 2012

reply

Hey Phil, I've known many parts of your story, but not the whole story. Thanks for writing and sharing it, it is indeed inspiring. Your great will and fantastic spirit has kept and will keep you strong. You have me and many friends that love you and hope to support you though the journey. As you are doing, keep capturing the opportunities of each day.

Kev, Jul 9, 2012

reply

An inspiration to say the least! I'd like to emphasize another point from your story and that is your search for knowledge and understanding about what was going on, and knowing to ask the right questions and not blindly just "do what your told." I learned that with my Steph through her struggles and encourage parents and friends to do the same--YOU have to be in control and informed. If you need a second opinion to be comfortable--get it.
Well Done.
I love you, my friend.

Kari, Jul 10, 2012

reply

Phil~ your new journey in life with PD sounds like my experience.I had symptons of lack of arm swinging,my right foot dragging among a few others.I too in the beginng tried to rationale these problems: I broke my left leg in grade school(they say breaking bones in your leg or foot is like a precurser for PD,if remembering correctly)getting on in years since I was 2 yrs away from 40.At the time, I was working as an assitant to a anestheseologist preparing his "tools" for the next case he was involved with@ the NE. Medical Center.I talked to one of our nurses about it,told her my beliefs or rationale.Linda said no, there definitly was something going on.I am lvg. parts out~however I am like Phil trying to have a sense of humor and roll with the punches.I am active at our welllness center exercising in the warm water pool and taking chair pilates and yoga classes there for years. To sum this up, I will not let PD run my life.Be strong and brave you can fight the fight!

worked at our medical center A went to a general neuro DR. first

Kate , Aug 22, 2012

reply

Do you find that your symptoms of tremor are worse after exercise for a couple of days

Buck, Aug 30, 2012

reply

Thanks for your story. It's encouraging to know that life continues on and the progression is slow. Your upbeat attitude is encouraging!

M, Dec 14, 2012

reply

Thanks.....

Mirela, Jan 9, 2013

reply

God bless you for eloquently sharing your story so openly. This answered many questions that I have, as I wait to find out whether or not I have PD. Your positive attitude is inspiring and really helped me more than anything else I have read. I wish you the best of luck, good health, and happiness for many, many more years to come.

Robin, Mar 17, 2013

reply

BRAVO!!!!
THANKS PHIL FOR MAKING SENSE OF AN INCOMPREHENSIBLE DISEASE. LET US HOPE, AS I MENTIONED TO MY CURRENT NEUROSCIENTIST AT THE PADRECC-'AT LEAST I WON'T HAVE TO CONTINUE TO GROPE AROUND IN THE MIDDLE OF THE NIGHT FOR ANSWERS.'(IN ONE SENSE IS ACTUALLY NOT TRUE BECAUSE I HAVE RBD AND SOMNAMBULISM). MEANING, AS EACH NEW SYMPTOM PROGRESSES, AT LEAST THERE IS THE SURETY THEY BELONG TO SOMETHING. THE DISEASE HAS A FACE AND THAT FACE HAS A CHAMPION. BEST OF WISHES FOR YOU AND YOUR COMPANION-I PRAY YOU BOTH KNOW YOURSELVES AND EACH OTHER...

JAMES SHOWERS JR, May 12, 2013

reply

Hi, Phil! I relate to your determination to interpret what your body is saying. I get frustrated when doctors run tests, tell you they are inconclusive then tell you to come back in 3-6 months! It sounds like you have a wonderful support system-one that believes you are feeling what you say instead if coming up with "you need to exercise more" as a solution-this is denial! I asked my Neuro the other day about right arm tremor when I yawn. He said it wasn't normal but said to "keep an eye on it." I just had a brain MRI, Carotid Doppler, and EEG in his office. All were "normal" but the EEG showed "slowing." He said it was common enough for a 55 year old. Problem is, I have so many medical issues my husband wants to trade me in! I have Secondary Adrenal Insufficiency dx'd about 1 1/2 years ago-so Prednisone for the rest of my life. This one I diagnosed myself and demanded an ACTH Stimulation test which confirmed it. Hypothyroidism for over 35 years. Pulmonary Sarcoidosis found about 5 yrs ago. Osteoarthritis all joints-already had right hip replaced-left and bi-knees are shot as well. I have had 2 rhizotomies in lower spine this year. Glaucoma. Cataracts. Bone Density scan recently revealed Osteopenia because the Prednisone is sucking the life out of my bones. Just had a Colonoscopy and EGD-4 polyps in stomach and 2 in colon w/abnormal small bowel biopsy gave him reason to send me labs to r/o or confirm Celiac Disease. Plus I've had IBD and reflux for many years. I take Prilosec 2x daily. My cabinet looks like a pharmacy it's actually embarrassing. My 93 yr old mother-in-law only has to take vitamins. If my body doesn't shut down, I will probably end up with chemical poisoning! Doctors think you are non-compliant if you don't take the meds they prescribe. I have every kind of specialist there is and now they want me to go to a Cardiologist. I have high BP and Vasovagal near syncope-prob cuz of the meds(or stress). I was let go from my last job because I have too many doctors appointments. I feel so alone in this with a family that thinks I am a hypochondriac and if I just took my aching body for a walk every night I could dump my pills and be cured. I am going to read more on PD even though I am scared that I may see myself there. Thank-you for your story! We are our own best advocate! My absolute best to you and thanks for listening!

Shawn Sobaszko, May 18, 2013

reply

I was just recently diagnosed a week ago at 51 years old and put on carb/levo reluctantly. Your story reminded me so much of my own. From the lack of left arm swing, to the slight tremors and clumsy gait. I was wondering what treatment plan you were on and how it was working for you. The carb/levo is a lot to handle and I also just recently lost my job due to appointments and not being able to keep up through my computer skills. Thank you so much for your story. God Bless

ave maria, May 31, 2013

reply

Participate in the discussion and share your insights

In reply to:

cancel