Q+A with Michele Shea: Living with Multiple Sclerosis

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An interview with Michele Shea, a longtime sufferer of Multiple Sclerosis. Michele will be one of the guests of honor at an upcoming event in Radnor, PA, raising funds and awareness for the National Multiple Sclerosis Society.

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Q+A with Michele Shea: Living with Multiple Sclerosis

  1. 1. On  Wednesday,  December  5th,  333  Belrose  Bar  &  Grill  will  partner  with  the  National  Multiple  Sclerosis  Society  (Delaware  Valley  Chapter)  to  host  Shop  for  MS.  This  well-­‐time  charity  fundraising  event  will  give  guests  an  opportunity  to  kick  start  their  holiday  shopping  and  kick-­‐off  NMSS’s  spring  Walk  for  MS  (May  2013).  For  more  information  on  the  event,  visit  the  organization’s  event  page  on  Facebook.  For  an  inside  peek  at  how  Multiple  Sclerosis  impacts  its  sufferers,  please  read  this  Q+A  we  did  with  Michele  Shea,  wife  of  Belrose’s  “local  legend”  bartender,  Mike  Shea.  Her  journey  was  the  impetus  for  the  event,  which  organizers  hope  will  prove  out  the  benefit  of  bringing  community,  charity  and  personal  struggles  together.  It’s  a  thoughtful  way  to  make  a  difference  at  a  time  of  year  that  puts  the  spotlight  on  giving.                                      When  did  you  first  start  to  "hear"  the  alarm  go  off?    At  age  30,  when  my  2nd  child  was  5  months  old,  I  was  jogging  daily,  trying  to  shed  baby  weight.  One  morning  I  was  hit  with  a  wave  of  weakness  in  my  legs.  All  of  a  sudden,  I  couldnt  feel  them.  A  hospital  visit  and  extensive  neurological  testing  followed.  It  wasnt  until  9  years  later,  while  getting  an  MRI,  that  I  was  diagnosed  correctly.  The  doctors  finally  discovered  the  telltale  lesions  in  my  brain.      What’s  been  the  most  difficult  challenge  of  living  with  MS?    Accepting  that  some  days  Im  simply  going  to  feel  lousy  and  out  of  sorts,  and  that  on  those  days  its  OK  not  to  feel  guilty  that  some  activities  and  chores  will  have  to  wait.    Whats  been  easier  than  you  anticipated?    Giving  myself  a  shot  everyday.    
  2. 2. How  has  the  original  diagnosis/prognosis  panned  out  over  time?  Quite  well.  My  remitting-­‐relapsing  diagnosis  has  remained,  and  not  crossed  over  to  the  chronic  progressive.  That  is  when  patients  face  a  constant,  downhill  battle  with  their  bodies.      How  much  of  that  had  to  do  with  your  own  lifestyle/modifications?    Its  hard  to  say  because  while  I  try  to  maintain  a  very  healthy  lifestyle  of  eating  well,  exercising,  not  smoking  and  drinking  moderately,  I  do  know  of  women  who  do  the  same,  but  unfortunately  continue  to  decline.      What  scares  you  most  about  having  MS?    Initially  I  was  most  scared  about  being  confined  to  a  wheelchair  at  some  point.  Now,  however,  nothing  scares  me.  Having  lived  with  MS  for  21  years,  I  know  how  to  cope  with  any  and  all  setbacks.    Whats  the  misconception  that  you  encounter  the  most?    Most  people  think  anyone  with  MS  is  wheelchair-­‐bound  or  using  a  cane.  If  like  me,  youre  ambulatory,  theyre  amazed.    What  are  some  of  the  latest  medical  advances  in  treatment/prevention  of  MS?    The  FDA  approval  of  injection  therapy  such  as  Betaseron,  Avonex  and  the  medication  Im  on,  Copaxone.    Are  there  experiences  that  you  think  about  pursuing  now,  rather  than  later,  as  a  precaution  to  losing  any  mobility?    No.      What  do  you  wish  people  knew  about  the  disease?    People  should  know  that  while  there  is  no  current  cure  for  MS,  people  afflicted  with  it  can  still  lead  very  normal  lives  with  some  limitations.    How  has  sharing  stories  with  other  sufferers  or  family  and  friends,  helped  you  cope?    It  has  made  me  realize  that  others  are  experiencing  the  same  pain,  numbness  and  frustrations  that  I  am,  but  you  dont  need  to  let  these  things  hold  you  back  from  living  your  life.      Does  MS  manifest  differently  in  men  than  women?    It  seems  that  the  few  men  I  know  with  MS  have  declined  more  quickly.  That  could,  however,  be  because  they  have  the  chronic  progressive  type  of  MS.      How  meaningful  are  events  such  as  Shop  for  MS  and  Walk  for  MS?    Extremely  important—the  more  awareness  there  is  about  MS,  the  more  money  will  be  raised  for  research  (which  has  exploded  in  the  last  20  years).    
  3. 3. What  resources  are  out  there  to  help  instill  a  positive  outlook?    Every  local  chapter  of  MS  provides  so  many  resources  to  anyone  in  need,  from  support  groups  and  educational  programs  to  seminars  for  long-­‐term  disability  and  financial  help  to  those  with  limited  or  no  insurance.      Are  there  exercises/activities  that  you  cannot  engage  in  that  you  wish  you  could?    Yes.  Id  love  to  do  power  yoga,  aerobics,  go  for  a  jog…  but  any  activity  that  raises  my  body  temperature  usually  renders  me  "noodle-­‐like."    Whats  the  one  way  friends,  your  husband,  kids,  can  help  you  move  forward  as  you  age  and  head  into  uncertainty  regarding  how  your  MS  will  manifest?    I  am  blessed  with  an  extremely  understanding  and  supportive  family  and  network  of  friends  who  have  made  dealing  with  MS  very  manageable.  When  I  was  diagnosed,  my  children  were  5,9  and  15,  so  being  involved  in  their  academic  and  sports  lives  was  my  major  concern.  But  with  the  help  of  my  loving  parents  and  terrific  husband,  who  has  been  there  for  me  from  the  start,  the  challenges  of  parenthood  and  coping  with  the  uncertainly  of  MS  have  never  presented  a  real  problem  for  me.  One  day,  my  son,  Michael  asked,  "Mom,  are  you  going  to  die?"  I  replied  "Well  yes,  someday,  but  not  because  of  this."  He  replied,  "So  whats  the  problem?"  And,  that  pretty  much  sums  up  my  situation  well;  I  do  not  view  any  of  my  challenges  associated  with  MS  as  insurmountable.              

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