- I SIGNED UP FOR THE ARMY IN 1978.
I REPAIRED WEAPONS.
ANYTHING THAT THE MILITARY FIRED I FIXED.
GOT HIRED AT THE POST OFFICE IN 1983.
I ENJOYED BEING A LETTER CARRIER FOR 30 YEARS,
AND I WOULD'VE STILL BEEN DOING IT
IF I DIDN'T GET BLESSED WITH THIS ILLNESS.
I COULDN'T DRIVE MY VEHICLE NO MORE.
I COULDN'T WALK...
HAD NO MOVEMENT IN MY SHOULDERS.
I COULDN'T PERFORM MY ROUTE.
I'D GET ON THE ROUTE AND FREEZE UP.
IT WAS VERY HARD FOR ME.
- MILES IS A 53-YEAR-OLD MAN
WHO HAS PARKINSON'S FOR THE LAST 14 YEARS.
HE HAS SUFFERED UNTIL ABOUT A YEAR AGO
WITH REALLY BAD MOTOR FLUCTUATIONS,
SEVERE RIGIDITY, TREMOR,
AND WHERE HE DID GET TO A POINT WHERE HE NEEDED A WHEELCHAIR
TO GO LONG DISTANCES, AND ALSO HE HAD A LOT OF PAIN.
- PARKINSON DISEASE PATIENTS DO HAVE A LOT OF PAIN,
AND WE OFTEN DON'T STRESS THAT AS THE MAIN SYMPTOM
THAT WE TALK ABOUT WITH PARKINSON'S DISEASE.
WE OFTEN ARE THINKING ABOUT THEIR MOTOR PROBLEMS,
THEIR TREMOR, THEIR SLOWNESS, THEIR GAIT,
BUT PAIN CAN BE A SIGNIFICANT SYMPTOM, AS WELL.
HI, MR. GARCIA. - HELLO.
- DR. OSTREM. NICE TO SEE YOU AGAIN.
THERE'S A LOT OF DIFFERENT WAYS IN WHICH PAIN
CAN BE A PART OF THE SYNDROME, AND ONE OF THE THINGS
THAT WE OFTEN SEE IT ASSOCIATED WITH
IS THAT OF PROMINENT RIGIDITY.
- THE WAY A PATIENT WOULD SENSE RIGIDITY
IS THAT THEY'RE VERY TIGHT.
IT'S LIKE YOU HAVE TIGHT MUSCLES.
- AND DYSTONIA IS ANOTHER TYPE OF MOVEMENT
THAT IS ASSOCIATED WITH CO-CONTRACTION OF MUSCLES.
- FOR EXAMPLE, THE NECK WILL START ACTIVATING
ON ONE SIDE REPETITIVELY, CONSISTENTLY WITHOUT STOPPING,
AND YOU START TO SEE MAYBE THAT SAME TURN OF THE HEAD
IF THE NECK MUSCLES ARE DYSTONIC.
- THERE'S MORE OF A ABNORMAL CURLING OF A JOINT,
OF A FOOT, OF A TOE.
IT COULD CURL DOWN. IT COULD CURL UP.
- AND IT'S OFTEN ASSOCIATED WITH PAIN.
- MILES' WORST PAIN WAS BETWEEN HIS SHOULDER BLADES
AND IN THE BACK, AND IT WAS REALLY TROUBLING
TO TRY AND SORT THAT OUT, WHAT THE PROBLEM WAS.
WE DIDN'T KNOW WHETHER IT WAS AN ORTHOPEDIC ISSUE
OR WHETHER IT WAS HIS PARKINSON'S,
FROM RIGIDITY OR DYSTONIA.
- THE PAIN THAT I'M DESCRIBING IN MY BACK AREA
WAS VERY INTENSE,
VERY SEVERE,
COULDN'T GET NO RELIEF AT ALL.
- I THINK THAT PAIN AS A NON-MOTOR SYMPTOM
IS VERY DISABLING.
- COULDN'T EVEN GET OUT OF BED SOMETIMES BECAUSE OF THE PAIN.
- SO PAIN AND DEPRESSION
DEFINITELY CORRELATE STRONGLY WITH EACH OTHER.
- WHEN I WAS HURTING,
I WAS SAD.
I WAS DOING EVERYTHING I COULD TO KEEP POSITIVE
AND THINKING THAT EVERYTHING WAS GONNA LOOSEN UP
AND I WAS GONNA GET BACK TO WORK.
I WANTED TO FUNCTION FOR MY WIFE AND MY SON
AND MY FRIENDS AND MYSELF.
I WASN'T READY TO THROW IN THE TOWEL JUST YET.
- IF THE PAIN IS FROM PARKINSON'S DISEASE,
IT OFTEN WILL GET BETTER WHEN YOU GIVE THE PATIENT
APPROPRIATE MEDICATION TO TREAT THEIR SYMPTOMS.
- LET'S JUST GET AN IDEA OF HOW BAD THE PAIN IS.
CAN YOU GIVE ME A SENSE ON THE SCALE HERE
HOW MUCH PAIN YOU'RE EXPERIENCING RIGHT NOW?
- I' HAVING MAYBE TWO TO FOUR.
- AND SO THE GOAL OF A NEUROLOGIST
TAKING CARE OF PARKINSON'S PATIENT IS REALLY
TO HELP IMPROVE THEIR ON TIME SO THAT THEY DON'T HAVE
THESE WINDOWS IN THEIR DAY WHERE THEIR SYMPTOMS
ARE VERY SEVERE AND THERE WON'T BE AS MUCH PAIN THEN, AS WELL.
- WE'RE REALLY HOPING THAT
WHEN WE TREAT THE PARKINSON'S SYMPTOMS WITH MEDICATIONS,
WITH DBS, OR WITH BOTOX THAT WE'RE REALLY RELIEVING
THAT PAIN SYNDROME SO THEY CAN CARRY ON THEIR LIFE.
- EXERCISE IS ONE OF THE MOST POWERFUL FORMS OF TREATMENT
THAT WE HAVE NOT JUST FOR PARKINSON'S,
FOR MANY OTHER HEALTH CONDITIONS.
- AND WE KNOW THAT IF PATIENTS DO EXERCISE
AND ARE MOVING THEIR BODIES MORE THAT THEY WILL HAVE LESS PAIN,
ACTUALLY HAVE LESS PROGRESSION OF THE DISEASE, AS WELL.
- IN JANUARY, DR. GLASS INCREASED MY MEDICATION
TO FOUR TABLETS EVERY THREE HOURS.
I WAS ONLY GETTING LIKE SEVEN MINUTES
OF ACTUAL MOVEMENT,
AND THEN I WOULD HAVE TO TAKE ANOTHER FOUR TABLETS,
BUT IT HAD NO RELIEF OF PAIN AT ALL.
I WENT TO PHYSICAL THERAPY, WHERE THEY PRESCRIBED FOR ME
A HEATING PAD
AND THE PILLS ALLOWING ME TO TRY TO ADJUST MY SPINE.
I WENT TO ACUPUNCTURE.
I TRIED YOGA, COULDN'T GET NO RELIEF AT ALL.
- WHEN HE HAD DEEP BRAIN STIMULATION SURGERY
ABOUT A YEAR AGO, THE MAJORITY OF HIS PAIN IMPROVED.
- RIGHT AWAY, I NOTICED WITH THE BPS INSERTED IN ME
THAT I HAD A FREE RANGE OF MOTION IN MY SHOULDERS,
AND THE PAIN STILL WAS THERE
BECAUSE IT WAS WITH ME FOR SO LONG THAT I STILL FELT THE PAIN,
BUT I DIDN'T FEEL THE TIGHTNESS IN MY SHOULDERS.
- AFTER HE HAD DBS, THE PAIN THAT HE HAD
IN HIS MID-THORACIC REGION-- AND THERE WAS ALSO SOME PAIN,
I THINK, IN HIS LOW BACK AND IN HIS FEET--
IMPROVED DRAMATICALLY,
AND SO THAT TOLD US THAT THAT PAIN
WAS PROBABLY FROM RIGIDITY OR A DYSTONIA.
- MY PAIN LEVEL RIGHT NOW ON A SCALE FROM ONE TO 10
BETWEEN NOW AND MY PAST PAIN,
IT WOULD PROBABLY BE A ONE AND A HALF TO TWO,
CONSIDERING BEFORE, I COULD'VE BEEN A 10 OR MAYBE EVEN A 15.
- AND SO WE'RE MANAGING HIM STILL WITH PARKINSON MEDICINES.
WE'RE OFFERING HIM BOTOX.
HE STILL NEEDS PHYSICAL THERAPY,
BUT HE STILL GETS AROUND REALLY WELL.
MILES HAS SOME DYSTONIA,
RESIDUAL DYSTONIA IN HIS GREAT TOE
WHERE IT'S REALLY DORSIFLEXING UP TOWARDS HIS HEAD,
AND IT'S QUITE PAINFUL.
- ONE OF THE SIDE EFFECTS THAT I HAD,
IT MAKES MY TOE STICK UP,
POKES A HOLE RIGHT THROUGH MY SHOE,
AND THESE SHOES ARE ONLY THREE WEEKS OLD.
- WE ARE NOW DOWN TO OFFERING BOTOX FOR HIM
TO TRY TO FOCALLY MAKE THAT MUSCLE MORE RELAXED
AND SO HIS TOE WILL BE MORE FLAT INSIDE HIS SHOES.
- SO WE WOULD USUALLY PLACE A NEEDLE ABOUT RIGHT IN HERE,
AND THAT'S ABOUT RIGHT WHERE THE MUSCLE BELLY IS
THAT'S CONTROLLING THIS MUSCLE,
AND THEN WE'D SEE THE TOE RELAX.
WE CAN'T INJECT BOTULINUM TOXIN
THROUGHOUT THE WHOLE BODY TO IMPROVE PAIN...
YOU READY TO GO? - YEAH.
- OK. HERE WE GO.
BUT IF THERE'S A SPECIFIC BODY REGION THAT IS IMPACTED
BY OVERACTIVE MUSCLES OR SPASMS OR DYSTONIA,
THEN YOU CAN TARGET THOSE MUSCLES THAT ARE OVERACTIVE.
ALL RIGHT. YOU DID A GREAT JOB.
NICE JOB HOLDING STILL, AND YOU SHOULD START
TO FEEL BETTER IN ABOUT FOUR TO FIVE DAYS,
SHOULD START TO MAKE THIS TOE RELAX
AND NOT CONTINUE TO POP UP LIKE THAT, OK?
- I DON'T THINK PEOPLE NEED TO LIVE WITH THEIR PAIN,
BUT WE, AS PROVIDERS, CAN'T HELP YOU
IF YOU DON'T TELL US THAT YOU'RE REALLY SUFFERING.
- I WOULD SPEND SOME TIME WITH SOMEBODY EDUCATING A PERSON
WHO HAS PARKINSON'S DISEASE AND PAIN THAT THEY'RE NOT ALONE,
THAT THERE ARE MANY, MANY PEOPLE WHO EXPERIENCED THE SAME THING,
AND THAT THEY CAN DO SOMETHING ABOUT IT.
- I'M FUNCTIONING...
NOT PERFECT...
BUT I'M FUNCTIONING WELL,
AND I'M HAPPY AS A MAN TO BE FUNCTIONING LIKE THIS.
MY 13-YEAR-OLD SON BENEFITS FROM IT,
MY WIFE, AND I HOPE EVERYBODY THAT I TOUCH.
- WE KNOW THAT IT'S REALLY IMPORTANT TO ACTIVELY ENGAGE
IN A SOCIAL LIFE AND GET THOSE LOVED ONES IN YOUR LIFE
TO STAY AROUND YOU, SUPPORT YOU.
- MY PAIN TOLERANCE IS PROBABLY PRETTY HIGH,
BUT MY WIFE COMING HOME TO ME AND MY SON COMING HOME TO ME
HELP ME WITH A LOT OF THAT.
WHAT MAKES ME HAPPY THESE DAYS IS KEEPING THE HOUSE IN ORDER,
TO MAKE DECISIONS, PAY MY BILLS, BEING RETIRED.
EVEN THOUGH I'D RATHER BE AT WORK,
IT'S KIND OF NICE BEING HOME,
MAKING SURE MY SON GETS OFF TO SCHOOL.
I'M NOT SCARED NO MORE. I TAKE A WALK TO THE STORE.
I WALK MY DOG.
I HAVE CONVERSATIONS WITH PEOPLE,
TRY TO ENJOY LIFE A LITTLE BIT SLOWER,
A LITTLE BIT SHAKIER,
BUT EVERYTHING IS OK NOW.