NORD has strongly supported the establishment and expansion of the Compassionate Allowances Program created four years ago by Social Security Commissioner Michael Astrue and his staff. This program fast-tracks the review of applications for disability assistance from people with devastating and, in many cases, rare diseases.
To illustrate the impact this program has had on the lives of many patients and their families, we are sharing with you the following story sent to us by a young wife and mother named Katie. Katie is active in one of NORD’s Member Organizations — the Association for Frontotemporal Degeneration.
Here, with her permission, is Katie’s story:
My husband Mike’s life was taken in early 2012 at the age of 33 by a progressive neurological disorder called Frontotemporal Dementia (FTD). Looking back, FTD made its first appearance during my pregnancy with our son, Noah, now not yet 5. Mike’s behavior became erratic and unpredictable. He purchased things we couldn’t afford, walked for miles in the middle of the night and began having problems at work. He abused alcohol. I started getting phone calls from Mike’s friends wondering if he was “mad at them” and I realized that Mike was having difficulty reading and writing.
By the time Noah was six months old, Mike’s executive functioning was so poor that I didn’t feel comfortable leaving the two of them alone together. In September of 2008 I accompanied Mike to a routine physical appointment with his primary care physician. I asked her “my husband is acting so weird, does he have a brain tumor?” She was the first of 8 medical professionals to misdiagnose him with depression.
My mother encouraged me to keep searching for a better answer to Mike’s changes and rapid decline. In February of 2009, Mike was seen by the Chief of Cognitive Neurology at the Beth Israel Deaconess Medical Center in Boston. He had something that the previous physicians and mental health professionals lacked; experience with FTD. At the time, Mike and I were 29. We had been married for 6 years and Noah was 10 months old. I was told that FTD was a terminal illness with no known treatment or cure. Social workers from the department encouraged me to consider residential placement for Mike.
Four days after receiving Mike’s diagnosis I returned to work. I wondered how I would tell my supervisor about Mike’s condition and what it would mean for my ability to continue working. I never had that conversation. My sister called me that morning to tell me that Mom had a heart attack in her sleep and didn’t wake up. My mother was 58 years old. Seventeen days after losing Mom we were back at Beth Israel to hear the results of neuropsychological testing that my father had for memory issues. At the age of 59 he was diagnosed with Early Onset Alzheimer’s.
I quit my job and let that three-bedroom house go to foreclosure. Noah and I moved in with Dad. Mike began a day care program and eventually moved into a skilled nursing facility. I learned to juggle play dates and medical appointments. And, I became a professional at paperwork. I had to do A LOT of paperwork for both Dad and Mike: Medicaid, food stamps, health insurance, the court system and more.
My best experience was with Social Security. Every employee I spoke to on the phone or in person treated me with compassion and respect. They were extremely knowledgeable and efficient at handling my questions and follow ups for more documentation. Both Mike and Dad benefitted from the Compassionate Allowances program and their approval process was expedited. This was such a relief. I was no longer working to earn a paycheck but the bills kept coming. SSDI gave me the autonomy to pay my basic bills and then focus on my most important job: being a caregiver. When a loved one is dying, everything else takes a backseat. But, being able to take care of the necessities was a weight off my shoulders and I am thankful for that reprieve.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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