Living with MS
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This photo essay was featured in the Philadelphia Inquirer on August 31, 2014:
http://www.philly.com/philly/news/local/20140831_Photo_essay_documents_life_with_MS.html
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This photo essay was featured in the Philadelphia Inquirer on August 31, 2014:
http://www.philly.com/philly/news/local/20140831_Photo_essay_documents_life_with_MS.html
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MS (Multiple Sclerosis) is a thief! It slowly robs its victims of motor function leading to disability, and possible incapacitation and shortened life. It’s very much like rapid aging- reduced capability and mobility.
Most people have heard of MS, but only those directly involved know what MS really looks like or what it means to live with MS. MS symptoms cover a very broad range. This essay is one person’s story- that person is 44 year old Fred Schwartz who suffers from a high degree of disability (8 on the 0-10 Expanded Disability Status Scale).
Diagnosed 20 years ago (1994), Fred’s MS was slow to take hold. After two years he was having difficulty walking and began declining social invitations, but somehow he remained in denial. By 2002 MS had largely claimed his legs and his ability to work as a financial manager. He couldn’t hide from it anymore. Fred was forced to accept that MS would impact much of the rest of his life. This reality caused Fred to become depressed and withdrawn. Through the intervention of a friend, Fred emerged to take on his new life living with MS.
Fred is single. He lives in his own home- a boarder provides some assistance and a housekeeper cleans and does laundry every two weeks. While his life is limited in many ways, he remains personally independent- not yet needing skilled care. He drives a specially equipped van and does limited tax consulting. But his independence is at risk as MS has been weakening his left arm and hand since 2011. Both arms are critical for “transfers” (movement between wheelchair, bed and toilet) and for driving. Fred candidly admits that he could be bedridden in the next two years and fears that could lead to rapid decline.
What is it like to live with MS?: “Every second of my life is affected by MS- sleep is the only escape; everything is hard to do; it restricts my social life- I had girlfriends but they couldn’t deal with it; I miss golf.”
Yet, there has been a remarkable benefit for Fred: “I’ve become a better person; I don’t smoke or drink anymore since that makes MS symptoms worse; I became a devout Catholic after a pastor explained suffering is a blessing that gets you closer to God- when you suffer, someone else gets relief; I’m a volunteer for the National MS Society at their office and I run a support group (he was named to the National MS Society Volunteer Hall of Fame; he made two skydives for the Myelin Repair Foundation to raise money and awareness!!)…. MS opened my eyes and gave me a different perspective on life…. I’m very limited physically, but I’m better off emotionally- I’m no longer depressed!”
Most people have heard of MS, but only those directly involved know what MS really looks like or what it means to live with MS. MS symptoms cover a very broad range. This essay is one person’s story- that person is 44 year old Fred Schwartz who suffers from a high degree of disability (8 on the 0-10 Expanded Disability Status Scale).
Diagnosed 20 years ago (1994), Fred’s MS was slow to take hold. After two years he was having difficulty walking and began declining social invitations, but somehow he remained in denial. By 2002 MS had largely claimed his legs and his ability to work as a financial manager. He couldn’t hide from it anymore. Fred was forced to accept that MS would impact much of the rest of his life. This reality caused Fred to become depressed and withdrawn. Through the intervention of a friend, Fred emerged to take on his new life living with MS.
Fred is single. He lives in his own home- a boarder provides some assistance and a housekeeper cleans and does laundry every two weeks. While his life is limited in many ways, he remains personally independent- not yet needing skilled care. He drives a specially equipped van and does limited tax consulting. But his independence is at risk as MS has been weakening his left arm and hand since 2011. Both arms are critical for “transfers” (movement between wheelchair, bed and toilet) and for driving. Fred candidly admits that he could be bedridden in the next two years and fears that could lead to rapid decline.
What is it like to live with MS?: “Every second of my life is affected by MS- sleep is the only escape; everything is hard to do; it restricts my social life- I had girlfriends but they couldn’t deal with it; I miss golf.”
Yet, there has been a remarkable benefit for Fred: “I’ve become a better person; I don’t smoke or drink anymore since that makes MS symptoms worse; I became a devout Catholic after a pastor explained suffering is a blessing that gets you closer to God- when you suffer, someone else gets relief; I’m a volunteer for the National MS Society at their office and I run a support group (he was named to the National MS Society Volunteer Hall of Fame; he made two skydives for the Myelin Repair Foundation to raise money and awareness!!)…. MS opened my eyes and gave me a different perspective on life…. I’m very limited physically, but I’m better off emotionally- I’m no longer depressed!”
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Fred Schwartz: Anyone who meets Fred would describe him as an upbeat, friendly, and charming guy who just happens to be in a wheelchair. But spending time with him reveals the depth of his challenge living with MS.
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Another Day Living With MS: Morning light explodes into Fred’s bedroom as he readies himself for the challenge of getting from bed to wheelchair. He has already taken a muscle relaxant and a pain killer. The medical alert button around his neck and urine drain tube are part of living with MS.
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Starting The Process: He manipulates his body into position without the help of his legs.
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Clutching His Skin.
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Tugging His Legs Into Position.
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The Launch: Once committed there is no turning back. He will either land in the wheelchair or land on the floor. He usually makes it but not always… His spiritual guide watches over him.
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Grasping The Wheelchair.
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Safe Landing: Fred makes the transfer, but it took a lot out of him. He’ll make many more transfers before this day of living with MS is over.
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Dressing: Fred struggles to put on a shirt. He spends most days in boxers and barefoot- pants, socks and shoes are just too difficult.
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Upbeat: Moments after his ordeal Fred emerges from the bedroom with a smile on his face. Living with MS is a struggle but he doesn’t let it dampen his spirit- even though his next 16 hours will be in a wheelchair. He’s a role model for anyone facing huge challenge.
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Meals: Everything about living with MS is difficult and food preparation is no exception- counters are too high, faucets are too far away, refrigerators are too deep, and opening a package can be impossible with his weak hand. Fred keeps his menu very simple- he eats the same things everyday: fruit, cereal, snack bars, prepackaged meals. But food is important to Fred- whenever he talks about trips he has taken in the past, he always mentions restaurants. Living “with” MS means living “without” many of life’s pleasures.
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Dining Room Table: To get ready for breakfast, Fred positions a tray on his wheelchair.
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Stretch: His yogurt is almost out of reach.
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Rip: Fred grimaces as he tears apart ripe bananas.
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Pull: With his weak hand, removing the yogurt seal without spilling the contents takes concentration.
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Bite: Getting into a snack bar requires another approach- teeth have become an alternative to his left hand for difficult tasks.
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Still Positive: Most people would be annoyed to have worked so hard for such a simple meal- but not Fred.
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Going To The Office: Fred describes his life as boring. Being largely housebound, his entertainment is split between his office and the TV.
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Office: Fred spends time on correspondence, news, video games, and part time tax work. He’s become an adept one-handed typist. Evidence of living with MS is all over the desk- pills, prescriptions and medical bills.
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Snail-Mail: Fred uses his “third hand” to open letters- his curled left hand is just a bystander.
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Therapy: If Fred is to remain independent, he must maintain his ability to do safe transfers. This means staving off the weakness in his left arm and hand. An occupational therapist is working on his hand and developing strategies to make his transfers less exhausting and more safe- for Fred, living with MS means lots of falls.
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Transfers: The therapist evaluates the bathroom where falls are the most dangerous. Fred is open to anything that will keep him on his own, but he understands that may not be realistic for the long term. Living with MS means living with others inside his personal space.
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TV: Fred socializes mostly through TV. Many people do that by choice, but for Fred living with MS raises high barriers to venturing out. He watches all sorts of shows including activities that he would love to do but can’t: cooking and golf. He used to be a very good golfer.
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Church: But one commitment is so strong that Fred goes out every week if he has enough energy and doesn’t fall in the process- Sunday night Mass. His effort is heroic and it’s nothing more than putting on pants- a 20 minute ordeal! These images don’t do justice to this extraordinary process.
Step 1- Use Reach Extender To Grab Pants.
Step 1- Use Reach Extender To Grab Pants.
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Step 2- Coax Uncooperative Legs Into Pants Legs: While sitting in the wheelchair he can only get pants up to his thighs.
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Step 3- Transfer To The Edge Of The Bed To Pull Up Pants As High As Possible.
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Step 4- Lay Down On The Bed For The Arduous Task Of Getting Pants Up To The Waist.
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Step 5- Flail Arms Wildly Left And Right Rotating The Torso So That Pants Can Be Pulled Up: To the uninitiated, this looks violent and exhausting.
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Step 6- Transfer Back To The Wheelchair: Fred’s expression is not about pain, but the explosive energy at the moment he makes the move. Like any athlete, he has to land the shot.
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Step 7- Tuck In Shirt And Zip Up: After almost 20 minutes Fred can finally relax. He takes these gymnastics in stride, but how long will his strength allow him to do this?
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Leaving The House: After yet another transfer to his power chair, Fred lowers himself to the garage floor.
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Up The Ramp: Fred enters his specialty equipped van. Living with MS requires a lot of equipment!
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On The Road: Fred really lights up behind the wheel. This is the one time living with MS that he is equal to everyone else. He’s a quite a good driver.
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Control System: Steering is controlled with a spinner knob. Throttle and brakes are controlled with a single lever. Decreasing strength of his left hand puts this system at risk. Fred is looking into other options to keep him on the road for as long as possible. Not being able to drive would be a serious loss.
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Payoff: After all the hard work, Fred is finally where he wants to be- St. Peter Roman Catholic Church in Merchantville, NJ. Living with MS will not keep him from living his faith.
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Back Home: Three hours after starting his preparation, Fred returns safely. It was difficult but worth it- he’ll do it again next week.
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Living With MS: Every second of Fred’s day, from transfer out of bed until transfer back, is impacted by MS. He’s sad about his limitations and concerned about the future, but he’s also optimistic for a cure- he would readily volunteer for a drug trial. For now he goes through each day with a smile on his face. His days end with a simple meal and TV late into the night. Then Fred heads to his bedroom for a few hours respite from living with MS.
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Flying High: In closing it must be said that no matter how severe the symptoms, living with MS does not have to diminish a person's spirit or what they can accomplish. This is one of Fred’s courageous skydives on behalf of the Myelin Repair Foundation- you go Fred!!
Fred skydives with Peter Rovnan of Freefall Adventures (Williamstown, N.J.); Photo by David Pancake.
Fred skydives with Peter Rovnan of Freefall Adventures (Williamstown, N.J.); Photo by David Pancake.