Gone Walking with Bob Mays

BOB MAYS:

MY BATTLE AGAINST PARKINSONS

THE AIM IS TO CONVINCE YOU THAT YOU CAN LEAD A FULL LIFE WITH PARKINSONS

I WAS DIAGNOSED IN 2012.  IT CAME AS A BOLT OUT OF THE BLUE AND A TOTAL SHOCK AS I HAD GONE TO SEE A CONSULTANT EXPECTING HIM TO TELL ME I HAD A TRAPPED NERVE.  HOW NAIEVE WAS I. I REMEMBER SITTING IN THE CAR CRYING TRYING TO TELL MY WIFE. 

I WAS VERY CONCERNED, I KNEW NOTHING ABOUT PARKINSONS, AND HOW IT WAS GOING TO IMPACT ON MY LIFE.

I REMEMBER SCOURING THE INTERNET FOR INFORMATION. I WATCHED A BBC DOCUMENTARY AND WAS LED TO BELIEVE THAT AS PARKINSONS SYMPTONS DEVELOP YOU GET WORSE AS THE YEARS GO BY. I CAN REMEMBER THE PROGRAMME STATED THAT SYMPTONS GET WORSE AFTER 5 YEARS.  I READ MY LIFE SPAN WOULD BE BETWEEN 10 – 20 YEARS AFTER DIAGNOSIS, I WOULD END UP WITH DEMENTIA AND AFTER 15 YEARS I WOULD END UP COMPLETELY DEBILITATED.  I WAS SCARED.

 WELL, ALL I CAN SAY IS I HAVE BEEN DIAGNOSED THE LAST 7 YEARS AND MY SYMPTONS HAVE GOT BETTER. TODAY MY INTENTION IS TO EXPLAIN HOW?

BUT FIRST, TO UNDERSTAND MORE ABOUT THIS ILLNESS I ATTENDED A SUPPORT GROUP MEETING IN BILLERICAY AND MET LYNDA VAN VEEN , A WONDERFUL LADY WHO INSPIRED ME THROUGH HER DEDICATION TO SUPPORT THOSE WITH PARKINSONS. LYNDA IS MARRIED TO CHRIS WHO WAS DIAGNOSED WITH PARKINSONS OVER 22 YEARS AGO NOW.  

FROM THAT DAY ON I KNEW THAT I COULD GIVE UP OR FIGHT THIS ILLNESS. I DECIDED THE LATTER.

I THREW MYSELF INTO ADVENTURE CHALLENGES, I COMPLETED THE THREE PEAKS, HADRIANS WALL, MARATHONS AND HALF MARATHONS.  WITH MY FRIENDS WE RAISED OVER £50,000 FOR MANY DIFFERENT CHARITIES. 

PLEASE BEAR IN MIND, CHARITY CHALLENGES IS WHAT I DO.  IT MAY NOT BE YOUR CUP OF TEA.  WHAT I AM TRYING TO EMPHASISE, SET YOURSELF SOME CHALLENGES, COULD BE LEARNING TO SWIM, RIDING A BIKE, LOSING WEIGHT, ATTENDING YOUR LOCAL GYM OR JUST GO DANCING, HOME OR IN GROUPS .  

PRIOR TO THE PROSTRATE CANCER WALK. WHICH I COMPLETED LAST YEAR, A FULL MARATHON THAT STARTED AT ST ALBANS AND FINISHED AT WEMBLEY WHERE I MET SIR GEOFF HURST TO RECEIVE MY MEDAL.  I WAS VERY FRUSTRATED AND IRRITABLE, AND DESPITE ALL THIS ACTIVITY I WAS NOT HAPPY WITH MY CONDITIONING.  I SUFFERED FROM A LACK OF BALANCE, I WAS FALLING OVER BY LEANING FORWARD TOO MUCH WHEN WALKING. I HAVE SUFFERED SOME HORRENDOUS FALLS.   MY SPEECH WAS IMPAIRED AND MY BODY WAS SO STIFF I WOULD LITERALLY GET OUT OF BED KNEEL ON THE FLOOR AND PULL MYSELF UP. I COULD NOT EVEN DRESS MYSELF WITHOUT HELP. 

ALL THE RESEARCH AND ADVICE I SOUGHT REVOLVED ON PHYSICAL ACTIVITY.  I KNEW OF A GYM OPENING NEARBY MY HOME, I WENT AND SPOKE TO THE MANAGER OF THE GYM AND EXPLAINED MY CONCERNS RELATING TO MY CONDITION, THE MANAGER INTRODUCED ME TO JOSH

WELL, MY LIFE CHANGED WHEN I SIGNED UP AT THIS LOCAL GYM AND MET JOSH.   HE HAS BEEN MY PERSONAL TRAINER FOR THE LAST 18 MONTHS.  I HAVE LOST OVER TWO AND A HALF STONE IN WEIGHT.  FOR THE FIRST 6 MONTHS HE FOCUSED ON BUILDING MY STRENGTH AND LOSING WEIGHT. HE WOULD STRETCH MY BODY IN PLACES THAT I DID NOT THINK WAS POSSIBLE TO DO ANYMORE. MOST NOTABLE WAS MY BALANCE IMPROVEMENT.

ONE MORNING I BROKE DOWN AND WEPT IN SHEER JOY AS FOR THE FIRST TIME IN YEARS I MANAGED TO PUT MY OWN SOCKS ON, TIE UP MY OWN SHOE LACES.  I COULD NOT WAIT TO TELL TERESA AND JOSH WHO WERE BOTH THRILLED FOR ME.   JOSH NOTICED ONCE AS I DROPPED MY KEYS I STOOPPED DOWN AND PICKED THEM UP WITHOUT THINKING.  NORMALLY I WOULD HAVE TO GET ON MY KNEES.

I RECALL A FAMOUS QUOTE FROM THOMAS EDISON

“OUR GREATEST WEAKNESS LIES IN GIVING UP. THE MOST CERTAIN WAY TO SUCCEED IS ALWAYS TO TRY JUST ONE MORE TIME”

I ALWAYS REMEMBER THAT.  SO, NO MATTER HOW I AM FEELING.  I DO NOT AND NOR SHOULD YOU EVER EVER GIVE IN TO THIS ILLNESS

SCIENTIFIC STUDIES HAVE SHOWN THAT EXERCISE AND PHYSICAL ACTIVITY CAN HAVE A DRAMATIC IMPACT ON THE OUTCOME AND WELL-BEING OF PEOPLE SUFFERING WITH PARKINSONS

FOR THE LAST 5 MONTHS JOSH HAS BEEN WORKING ON MY BALANCE.   SIMPLE THINGS LIKE LUNGES, I HAD TO USE AN AID TO START OFF WITH NOW I CAN DO A LUNGE ON A FAIRLY CONSISTENT BASIS WITHOUT WOBBLING.  

I CAN NOW STAND UP WHEN GETTING OUT OF BED.   I CAN NOW WALK THE DOG AND PICK UP HIS MESS WITHOUT HAVING TO KNEEL ON THE GRASS.  

JOSH IS TOUGH WITH ME. HE A GREAT MOTIVATOR, I NO LONGER STOOP AS I WALK, HE MAKES ME WALK ON THE TREADMILL CARRYING 8KG KETTLE BELL IN EACH HAND KNOWING I CAN NOT TURN THE MACHINE OFF.  IT USED TO BE I HAD NO CONFIDENCE ON WALKING ON THE TREADMILL WITHOUT HOLDING ON.

ALL THE EXERCISES I HAVE SHOWN YOU TODAY DISPLAY THE FOLLOWING

CARDIOVASCULAR ACTIVITY

STRENGTH

STRETCHING

BALANCE AND COORDINATION

HOW HAS MY LIFE IMPROVED

GAIT AND BALANCE

FLEXIBILITY

ENDURANCE/ENERGY

QUALITY OF LIFE

SENSE OF WELL-BEING

MEMORY AND DECISION MAKINGATTENTION AND CONCENTRATION

MOOD

REDUCED DEPRESSION AND ANXIETY

AND MOST IMPORTANT

QUALITY OF SLEEP

TAKING SMALL STEPS, AND WITH THE BENEFITS OF EXERCISE. THIS COULD BE YOU TOO.

AS A RESULT, I NO LONGER SHUFFLE OR STOOP FORWARD AS I WALK. MY BALANCE IS MUCH BETTER 

I AM A BETTER PERSON NOW IN THAT MY CONFIDENCE IS SKY HIGH.  I LOOK FORWARD TO THE CHALLENGES I FACE EVERY DAY. I NO LONGER FEEL SORRY FOR MYSELF.  MY WIFE TERESA IS HAPPIER IN THAT I CAN NO LONGER USE THE EXCUSE TO AVOID HOUSEWORK BY USING THE PARKINSONS CARD. DOES NOT STOP ME TRYING ON OCCASIONS BUT TERESA GIVES ME NO SYMPATHY.

AS A PARKINSONS SUFFERER, SPEAK TO YOUR LOCAL SUPPORT GROUP, THEY MAY BE ABLE TO PROVIDE YOU DISCOUNT PRICES FOR SWIMMING AND PHYSIO TREATMENTS.  DO NOT BE FRIGHTENED OF ASKING FOR HELP.

MONEY GIVES YOU DIFFERENT OPTIONS BUT MUST NOT BE AN EXCUSE FOR LACK OF ACTIVITY.  

FOR THOSE THAT HAVE RETIRED OR OUT OF WORK, KEEP THE BRAIN EXERCISED, DO THE CROSSWORDS, SUDOKU, JIGSAW’S, TAKE ADVANTAGE OF THE INTERNET. GET INTO THE SOCIAL MEDIA WORLD

LET ME TELL YOU, WITHOUT THE WILL TO BATTLE THIS DISEASE YOU WILL LET IT TAKE OVER YOUR LIFE.

I HAVE PROVEN WITHOUT ANY SHADOW OF A DOUBT THAT I FEEL I AM WINNING THE BATTLE AGAINST PARKINSONS.  SURE I HAVE OFF DAYS WHICH ARE RARE BUT WITH THE SUPPORT AND ENCOURAGEMENT FROM MY WIFE TERESA, JOSH AND MY FRIENDS, LIFE FOR ME IS GOOD.

IN JUNE 2019 THIS YEAR I RETURNED TO SCAFEL PIKE AND SMASHED IT.  THEN IN AUFGUST 2021 1M TO WALK THE COTWOLD WAY, A DISTANCE OF 102 MILES. CHECK OUT MY WEBSITE ON

uk.virginmoneygiving.com/BobMays.

IF ANYBODY HERE FANCIES A WALK IN A BEAUTIFUL PART OF ENGLAND, LET ME KNOW.

WHY DO I THROW MYSELF INTO SUCH CHALLENGES, I GIVE MYSELF A GOAL EVERY YEAR.  I CANNOT GIVE UP AND WILL CONTINUE USING FITNESS UNTIL I AM PHYSICALLY UNABLE TO.

LET ME TELL YOU, YOU WILL NOT DIE FROM PARKINSONS BUT YOU MAY DIE DUE TO COMPLICATIONS OF MOBILITY AND THEREFORE IT IS IMPORTANT YOU EXERCISE TO MAINTAIN A QUALITY OF LIFE FOR AS LONG AS POSSIBLE.

I BELIEVE THAT THE CRUCIAL THINGS ARE YOUR OWN PERSONAL EFFORT AND DEALING WITH THE CHALLENGE BOTH MENTALLY AND PHYSICALLY.

HOW YOU DEAL WITH PARKINSONS IS YOUR CHOICE.  I URGE YOU TO FIGHT IT WITH ALL YOUR ENERGY AND USE EVERY TOOL AVAILABLE.

 OR 

JUST SIT BACK AND TAKE THE TABLETS. 

YOU NEED TO KNOW THIS

BEING INACTIVE COULD SPEED UP YOUR SYMPTONS PROGRESSION.

DO YOU KNOW HOW MUCH TIME YOU SPEND SITTING EACH DAY, DO YOU KNOW HOW MANY STEPS YOU TAKE.  ONCE YOU KNOW THIS YOU CAN CHALLENGE YOURSELF AND TRY TO BE MORE ACTIVE.  IT’S GOOD FOR YOUR CARDIAC HEALTH GENERALLY AS WELL AS IT WILL SLOW DOWN THE PROGRESSION OF YOUR PARKINSONS   

I OWE IT TO MY WIFE, MY KIDS, MY FRIENDS AND MOST OF ALL MYSELF TO NEVER GIVE UP AND ENDEAVOUR ALWAYS TO STAY POSITIVE AND STRONG BY USING PERSONAL FITNESS IN THE BATTLE AGAINST PARKINSONS.

LET ME SUMMARISE, YOU DO NOT HAVE TO CLIMB MOUNTAINS, YOU DO NOT HAVE TO DO MARATHONS, YOU DO NOT HAVE TO JOIN THE GYM. WHAT YOU CAN DO IS PUT YOU AND YOUR FAMILY FIRST, GO OUT FOR REGULAR WALKS, TO WALK IS AN EXERCISE,  DO NOT FEEL SORRY FOR YOURSELF, ENJOY THE FRESH AIR, PUT A SMILE ON YOUR FACE. SWING THOSE ARMS AND PICK YOUR FEET UP, IT HELPS WITH BALANCE.  JOIN THE LOCAL SUPPORT GROUP, YOU AND YOUR PARTNER GO TOGETHER, BE UPTO DATE WITH EVENTS THAT THEY ORGANISE.  JOIN IN AND NEVER GIVE UP.

THINK OF EXERCISE AS A MEDICINE

PLEASE NOTE THIS

THERE ARE MANY REMEDIES ON U TUBE WITH SIMPLE EXERCISES THAT YOU CAN DO AT HOME COSTING NOTHING APART FROM YOUR TIME. 

THERE IS HELP AND SUPPORT TO TAILOR THE EXERCISES TO YOUR NEEDS AND DO ‘HOMEWORK’ OUTSIDE THE SESSION DURING THE WEEK.

REMEMBER = MENTAL AND PHYSICAL STIMULATION IS VITAL IN HAVING TO COPE WITH THIS DISEASE

DO NOT FORGET, YOUR FAMILY WILL NEED YOUR SUPPORT TOO.  THEY WILL WORRY, DON’T LET THEM. 

I WANT YOU ALL TO ASK YOURSELF, IS YOUR QUALITY OF LIFE WHAT YOU WANT? IS IT PARKINSONS STOPPING YOU OR ARE YOU PLACING LIMITS ON YOURSELF ON WHAT YOU CAN ACHIEVE?

PLEASE PLEASE PLEASE – PARKINSONS DOES NOT HAVE TO DEFINE YOU. DO NOT ALLOW YOURSELF TO LET IT TAKE OVER YOUR LIFE

IN NOVEMBER 2019 I PUT TOGETHER A REPORT ON THE ISSUES SURROUNDING PARKINSON SUFFERER’S ATTENDING HOSPITAL AS AN IN PATIENT.  I WAS WELL AWARE OF THE CAMPAIGN BY PARKINSON UK TO GET THE MESSAGE ACROSS . AS A RESULT I HAD A PRIVATE AUDIENCE WITH MATT HANCOCK THE SECRETARY OF STATE FOR HEALTH AND SOCIAL SERVICES.  THE MEETING WAS EXTREMELY USEFUL AND I HOPE ENSURING PATIENTS GET THEIR MEDICATION ON TIME WILL IMPROVE

DURING THIS PERIOD OF UNCERTAINTY, I NO LONGER ATTEND THE GYM BUT DO A WALK EVERY DAY.  IT IS ALSO IMPORTANT TO ME THAT I FOCUS ON BALANCE WHICH IS AN ISSUE I SUFFER FROM.  I COUNTER THIS THROUGH SIMPLE LUNGES

JUST LIKE TO FINISH OFF WITH A QUOTE FROM WALT DISNEY:

“AS WALT DISNEY SAID THE WAY TO GET STARTED IS TO QUIT TALKING ABOUT IT AND BEGIN DOING”

SO

START DOING, CHANGE YOUR LIFE AND START TRAINING



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