In 2015, Sandy’s husband, then 45, suffered two strokes. The result left him both disabled and unable to work. One of the many effects from these two strokes was a condition known as Pseudobulbar Affect.
Pseudobulbar Affect is a condition, according to pbainfo.org, that causes uncontrollable crying and/or laughing that happens suddenly and frequently. It can happen in people with a brain injury or certain neurological conditions. A person having a PBA crying spell may cry when they don’t feel sad or when they only feel a little bit sad. Someone having a PBA laughing spell may laugh when they don’t feel amused or when they only feel a little bit amused.
For many who suffer daily from Pseudobulbar Affect, relief has come with the advancement of medications that provide a renewed sense of normalcy to their lives. Yet sadly, as we hear time and again, it’s the cost of treatment and these very medications, that too often, seek to stand between the patient, and getting their lives back, and for many even still, actually saving their life.
For Sandy and her family, it has left her being the only one able to work. Though they do have health insurance, it does not cover the entire cost of the medication her husband so desperately needs. For them, there is but one medication that works, and the cost is alarming. This left them at the crossroads of facing a far too common reality.
Not able to afford treatment, a conclusion was made that for Sandy’s husband, he would have to stop taking the medication. In her words, “He cannot live a half normal life without it.” The anxiety and depression that he faced every single day was beyond debilitating.
But something happened. Someone told her about Patient Services, Inc.
“PSI is 100% responsible for saving my husband’s life. The financial help they have given us for his medicine is nothing short of a miracle for us. I thank God for these men and women who are so selfless and this organization for their help. Without them I would have to also hire someone to sit with my husband while I work if he didn’t have this medication. Thank you PSI. You will never know the impact you are making in our lives as well as others across the country. We are forever grateful. May God bless you all.” Sandy tells us in an email she had recently sent to us.
Overcoming The Doughnut Hole: Jerry’s Story
When Melissa’s husband Jerry was diagnosed with a brain tumor in October of 2008, their son was just 11 months old. Fortunately, Jerry did not have to undergo radiation or chemo until 5 years later when the tumor first showed signs of growth. That was 2013.
Since then, Jerry has battled severe anxiety and depression and has tried multiple medication regimens to aid in these treatments. Most recently, in 2017, his neurologist offered to try a new medication that was being used to treat anxiety and would possibly offer a bit of normalcy back to our routines and would allow him a bit more freedom that he so desperately wants.
Melissa tells us, “They were right. The medication has been a breath of fresh air. The only problem, it is extremely expensive. Medicare pays for most of it, but it causes him to reach the “doughnut hole” so quickly that we end up owing more than $400 each month for the medication that he so desperately needs. This $400 doesn’t include the other 11 medications that he takes on a daily basis.”
But again, like Sandy and her husband, Melissa found out about PSI.
“Without PSI, we never would have been able to keep up his regimen of the daily medication (twice a day) that allows him the freedoms to live outside of crushing anxiety. My son wouldn’t be able to enjoy his father in a way that he should be able to, like other children are able to spend quality time with their fathers. My husband’s original prognosis was 5 to 10 years and this year, marks 10 years. We have never focused on the prognosis, but it has always been in the back of our minds (how could it not?) and we pray each day for another good day and Jerry’s medication with the help of PSI give us those good days.”
From heartbreak to hope, we’re honored to have played a part in helping these two families find relief from the overwhelming costs of their medication.
For the employees at PSI, these two stories represent many more of why we wake up each morning and cannot wait to get to work. We are honored to have an opportunity to come alongside those battling rare disease and chronic illnesses in a way that might bring them perhaps a sliver of hope. For it is in each of their stories, that we find strength, courage, and inspiration. And it is here, where we find in ourselves, a new hope for our own lives.
Simply put, for all those we get to work for and fight fight every single day. We have two words for you.. You matter.
If you or someone you know has been recently diagnosed with a rare disease or chronic illness, please visit our website and learn about the work of PSI. We’d also be honored to share your story.
Everybody has a story, especially a story if you have a child or a family member with a chronic illness. Your story matters and can change people’s lives. We believe that it can change people’s minds. We need your help to continue to share your stories, and to continue to express your first amendment right. Will you join us? Take action today by clicking here.
Together, we can make a difference.