Progressive Multiple Sclerosis
"A Certain Kind of Beauty"
By Ashley Neglia
For the past 11 years, Dan Aronie's body has been ravaged by a rare form of progressive relapsing multiple sclerosis that attacks the central nervous system and steadily damages the nerves. At 33, his condition has deteriorated to such an extent that he can no longer live on his own. His tremors are so severe that he cannot feed or dress himself, and his body is so weak that he no longer has the strength to sit up on his own. Today he is dependent on 24-hour care from his family and hired caretakers, who help him get out of bed, dress, eat and go to the bathroom.
After Dan was diagnosed at 23, his mother, Nancy Slonim Aronie, asked him if he wanted to record the disease's progression. He agreed, and with the help of family friend, Gerry Storrow, Nancy began filming her son's steady decline. When Nancy showed her personal footage to filmmakers Liz Witham and Ken Wentworth, it struck a personal note and the decision to create a documentary about Aronie's life was made.
Called "A Certain Kind of Beauty," the film follows Aronie's progression from a 27-year-old, angry and struggling with his diagnosis, to a peaceful 33-year-old who can barely speak, yet somehow becomes a source of strength and indomitable will for everyone he encounters.
AOL Health had the opportunity to interview Aronie's mother, Nancy, to find out what life has been like for her son and her family.
Story continues below the gallery.
Living With Progressive MS
For the past 11 years, Dan Aronie [pictured] has been ravaged by a rare form of progressive relapsing multiple sclerosis that attacks the central nervous system and steadily damages the nerves. At 33, his condition has deteriorated to such an extent that he can no longer live on his own and requires 24-hour care to help him perform basic tasks.
Film-Truth Productions
Before his diagnosis, Aronie [pictured in his early 20s] had been an aspiring model and actor. He was handsome, well-liked and seemed to always have a girlfriend in tow. "He thought he was God's gift to women," recalls his mother, Nancy Aronie. But his disease has robbed him of the chance to ever walk down the aisle or perhaps even have a relationship again.
Film-Truth Productions
After being diagnosed at 23, Nancy asked Dan [pictured at age 27] if he wanted to record the disease's progression. He agreed, and with the help of family friend, Gerry Storrow, Nancy began filming her son's steady decline. When Nancy showed her personal footage to filmmakers Liz Witham and Ken Wentworth, it struck a personal note and they decided to create a documentary called "A Certain Kind of Beauty" about Aronie's progression with MS.
Film-Truth Productions
Dan was living in Denver when he was first diagnosed with progressive multiple sclerosis. One night he had extreme difficulty speaking and couldn't get words out. When he went to the emergency room the next day, doctors initially said he had suffered a stroke. But when the MRI results came back, they revealed Dan had MS. "We knew nothing about MS," says Nancy. "And the research we did was pretty scary."
Film-Truth Productions
"Ram Dass [pictured, left] uses an expression, 'How do you keep your heart open in hell?'" says Nancy. "And I feel like that's the work that Dan has given us the opportunity to do. How do you stay open and loving, and not freeze and get numb and angry? It's hurt. The pain has been unbelievable, but behind the pain there's always this knowing that this isn't an accident... This whole story was meant to be."
Film-Truth Productions
"It's been very hard watching my husband, Joel, [pictured, left] suffer because he doesn't have quite the same spiritual trip I do," says Nancy. "So I remember saying to him a long time ago, 'Would you rather have Dan angry and able-bodied or crippled and beautiful?' And he said, 'Angry and able-bodied.' That was a long time ago. And now he sees that Dan's at peace."
Film-Truth Productions
As the disease has progressed, Dan has lost the ability to take care of himself. He can no longer brace himself or push himself into bed. His parents and hired caretakers must help Dan perform basic tasks, such as showering, eating and going to the bathroom. His short-term memory has also begun to wane, and because Dan's condition is progressive, his body will continue to deteriorate. Here he looks at footage of himself at age 27.
Film-Truth Productions
Living With MS
AOL Health: Can you describe what life is like with MS?
Nancy Slonim Aronie: MS is like having a loose wire in your body, and you don't know where it's going to hit and what it's going to short out. It can short out the brain. It can short out the sight. It can short out your arms, your feet, your legs.
AOL Health: As Dan's condition has continued to worsen, what is he now capable of doing on his own?
Aronie: Nothing. He can't brace himself or push himself into the bed. [His caretakers] have to lift him. We lift him; we carry him. We diaper him. We clean him. We shower him. Most of the time he can't go to the bathroom on his own. He can't do anything, but he can make you laugh. He can make you feel like you're important. And he still can flirt. He says, "Mom, you're an amazing woman."
AOL Health: Will his condition ever stabilize or will he continue to deteriorate?
Aronie: We never know. The prognosis is that he'll get worse and worse, and he'll die. But so far, this guy almost died so many times. He had pneumonia three times this winter. He's been in the hospital three times, and the third time he got MRSA and another horrible bacteria.
AOL Health: Does he contract illnesses more easily?
Aronie: No, because he takes so many supplements he actually is healthier than most people in the house. People get colds, he doesn't get them. He's pretty healthy except for the MS. But his immune system can't fight off the big stuff.
AOL Health: What kind of care does he have?
Aronie: He has 24-hour care. He lives on Martha's Vineyard, and he lives in a regular house. Two of the caretakers live there, and two of the other caretakers come and work shifts. So we have four people who work 24/7, and we put our time in, too. But we're so lucky because now we have the best team in the world. They all love him and they all love each other.
This is the most meaningful job in the world -- to take care of somebody and know that their life is in your hands, and you're making them laugh and you're feeding them and you're watching them respond because of your help. I think that's why these people are healing and why they're happy in their work and how he's healing, too. I mean, he's hanging in. This guy should have died 100 times, and he won't quit. I think he'll quit when he knows we can't afford it anymore.
AOL Health: How much does Dan's care cost?
Aronie: He's costing us $70,000 a year. Everything we make. We're both working. He has Medicare and Medicaid, and so all of the surgeries were covered. But the supplements [are not covered]. We get help from the state. They pay about $10.21 an hour, and we pay $20 an hour. But he's our yacht, and even though he doesn't sail in the water he sails in our hearts.
Continued: An Emotional Toll
Read and Post Comments |
More on AOL Health
Recent Comments
MarciaJ720 01:37:57 PM Aug 27 2009
I not only watched A Certain Kind of Beauty on-line but I went ahead and ordered the DVD and watched it as well.Touched me because I have had friends with who had a very similar course as the Dan the Man in the documentary. I have PPMS, just a slow downhill trip but I feel lucky to have what I have over what others have been given to fight.My heart, my thoughts go to Dan and his family.
DonnaDCMB 12:19:57 PM Jul 18 2009
Our family has our own MS story.. my wonderful brother was diagnosed with MS whenhe was 17 years old and died at the age of 55. He had a progressive case also.He was truly an inspiration-- he never once complained or showed signs of angerthrough all of the down sides of his illness. By the age of 25 he required total care.He always lived at home with the help of my mother, who died when he was 41, thenmy dear husband and I took over as his caregivers with the help of wonderful sitters.Dominic smiled everyday and spoke with his sweet eyes. We were truly blessed withthe gift of my brother, not ever looked upon as a burden. The last 22 days of hislife, he went into renal failure. We prayed to St. Joseph, the patron Saint for a peaceful happy death and Dominic's last weeks were truly beautiful. All themany visitors entered his room crying and left smiling and laughing-- he talkedand puckered up to kiss everyone who visited him. On January 29,2007 hewent home to be with the Lord and my Mot
lee comma ireene 10:58:01 PM Jul 17 2009
Dan's mother as well as his family and caretakers have all of my respect. To take care of someone requires a lot of work. I admire Dan's persistence and especially the fact that he is not a quitter. I wish the best for him.
SnkrsBlue 02:07:38 AM Jul 04 2009
MORE on GLUTEN ATAXIA AND MS. Anyone with a diagnosis of MS should look into Gluten as a potential cause of the symptoms. Google Roger MacDougall - the famous British playwright and author or co-author of "The Mouse That Roared" starring Peter Sellers and "The Man in the White Suite" starring Alec Guinness - was diagnosed with MS - not told by his world famous Nuerologist - progressed rapidly to the point where he couldn't walk, was bed-ridden - and practically blind from Nystagmus. After being told 4 years into his disease - he got disgusted with the medical profession (I think our medical profession is wonderful - we're just a young species) and decided to try a very basic diet - after an excruciatingly long time - some 12 years - he experienced a nearly full recovery. He walked (WALKED) back into his doctors office for a re-examination - and the doctor could find only one remaining symptom - a slight tracking problem in his eyes - the nystagmus I mentioned above. NOT ALL MS - o
SnkrsBlue 01:44:43 AM Jul 04 2009
Anyone with a diagnosis of MS should see - http://www.direct-ms.org/rogermcdougall.html. Find out if GLUTEN is causing or making your illness worse. Eliminating GLUTEN from his diet is helping my son recover - or at the least not progress as rapidly as it appeared to be.
SnkrsBlue 01:44:04 AM Jul 04 2009
Anyone with a diagnosis of MS should see:http://www.direct-ms.org/rogermcdougall.htmlFind out if GLUTEN is causing or making your illness worse. Eliminating GLUTEN from his diet is helping my son recover - or at the least not progress as rapidly as it appeared to be.
MountDeva 03:14:35 PM Jun 30 2009
He took vaccines. Forerign proteins got to his dna. look up dr.len horowitz. do the research.
ROSYFAYM 10:10:07 PM Jun 29 2009
Has anyone thought about "Wilson's Disease"? It's a rare, inherited disease that is caused by excess buildup of copper in the liver. Some of the symptoms include tremors, difficulty walking, and slurred speech. Symptoms can appear as early as 5-years-old or as late as those in their 40's.
ROSYFAYM 10:08:56 PM Jun 29 2009
Has anyone thought about "Wilson's Disease"? It's a rare, inherited disease that is caused by excess buildup of copper in the liver. Some of the symptoms include tremors, difficulty walking, and slurred speech. Symptoms can appear as early as 5-years-old or as late as those in their 40's.
Amorg04 08:05:24 PM Jun 29 2009
i have survived advanced stage four non hodgkins lymphoma and a hemoragic stroke. i was not given much of a chance to survive either one and an wondering why i did not die
