\u2018My mind is still functioning, but my body isn\u2019t\u2019: St. Petersburg man with ALS finds help through local nonprofit.<\/p>\n
ST. PETERSBURG, Fla. \u2014 The disease ALS is often described as a thief \u2014 stealing a person\u2019s ability to move, speak and eventually breathe, while their mind stays fully aware. It\u2019s also one of the most expensive diseases to manage, requiring specialized equipment, around-the-clock care and constant support.<\/p>\n
For Rob Pope and his wife, Tammy, the toll has been both emotional and financial.<\/p>\n
Rob was in his early 40s and in good health when he started losing his balance and slurring his speech. Within a few years, he was diagnosed with a slow-progressing form of ALS, or amyotrophic lateral sclerosis \u2014 the same condition once known as Lou Gehrig\u2019s disease.<\/p>\n
\u201cThat has been the hardest part,\u201d Pope said. \u201cMy mind is still functioning, but my body \u2014 the one thing that I thought I could always depend on \u2014 is no longer working.\u201d<\/p>\n
As Rob\u2019s condition worsened, Tammy became not just his wife but his full-time caregiver.<\/p>\n
\u201cIt\u2019s heartbreaking,\u201d she said. \u201cOne of the things we struggle with a lot is that caregiving takes over being a wife. That\u2019s hard \u2014 that\u2019s a struggle for us.\u201d<\/p>\n
ALS has also been called \u201cthe bankruptcy disease\u201d because of the staggering cost of care. Deb Fabricatore, director of development for HARK ALS<\/a>, said families often spend hundreds of thousands of dollars out of pocket.<\/p>\n \u201cIt does often cost families $200,000 after insurance to care for their loved one,\u201d Fabricatore said.<\/p>\n HARK ALS, a nonprofit organization with a chapter in St. Petersburg, works to ease that burden through small grants that cover expenses insurance won\u2019t. From wheelchair repairs to mobility van maintenance, the group\u2019s help can mean the difference between independence and isolation.<\/p>\n For the Popes, that help came when their van broke down unexpectedly.<\/p>\n \u201cIt was like $700, and I didn\u2019t know what to do,\u201d Tammy recalled. \u201cI reached out and HARK said, \u2018Send me the invoice \u2014 we\u2019ll take care of it.\u2019 It was such a weight lifted.\u201d<\/p>\n To continue supporting local families like the Popes, HARK ALS will host its second annual fundraiser at The James Museum in downtown St. Petersburg on Nov. 2. The event will feature food donated by local restaurateur Matthew Smith, owner of The Hangar Restaurant.<\/p>\n \u201cI\u2019m absolutely blessed to be in the position I am,\u201d Smith said. \u201cI\u2019m always first in line to give back.\u201d<\/p>\n Despite the challenges, Rob continues to find joy in the simple things \u2014 spending time with his family, fishing and working on a 1937 Cadillac with his dad.<\/p>\n \u201cI love being on the boat and fishing,\u201d he said. \u201cHe\u2019s still captaining \u2014 we still get on that boat and he puts us on the fish.\u201d<\/p>\n Funds raised from HARK\u2019s event will go directly to Tampa Bay families battling ALS \u2014 not to research, but to the day-to-day support that helps them live with dignity.<\/p>\n HARK ALS is holding this fundraiser with the help of so many local businesses: The James Museum,<\/a> The Hangar, Jay LaMalfa ICG Next Finance, Cirsco Roofing, Albright Roofing, The Artistic Whisk, Duke Energy, The Whiskey Exchange and many more.<\/p>\n