Support Phil and Lety Through MSA-P Challenges

Hi, my name is Camille and I'm fundraising for my parents, Phil and Lety Lozano, as they continue to cope with the challenges of my dad’s diagnosis of Multiple System Atrophy- Parkinsonian type.

We are hopeful that with more regular treatment from physical therapists, and a medically- trained caregiver, he can begin seeing improvement in his strength and hopefully stand up and walk again.

We would love to see him back on his feet and walking, and your donation will go toward paying for care specialists with this goal as our focus.

Ultimately, Dad will need to be able to walk 30 feet as part of the requirements to enter a clinical trial that could supply Dad with medication that could potentially help him with symptoms including slowness of movement, fluidity, halting, stiffness, rigidity, known as bradykinesia.

→More about Dad’s disease, Multiple System Atrophy- Parkinsonian type:

“Multiple system atrophy- parkinsonian type (MSA-P) is a rare condition that causes symptoms similar to Parkinson disease. However, people with MSA-P have more widespread damage to the part of the nervous system that controls important functions such as heart rate, blood pressure, and sweating.”

MSA damages the nervous system. The disease tends to progress rapidly. About one half of people with MSA-P have lost most of their motor skills within 5 years of onset of the disease.

Some symptoms of MSA-P:

-Tremors

-Movement difficulties, such as slowness, loss of balance, shuffling when walking

-Frequent falls

-Muscle aches and pains (myalgia), and stiffness

-Face changes, such as a mask-like appearance to the face and staring

-Difficulty chewing or swallowing (occasionally), not able to close the mouth

-Disrupted sleep patterns (often during rapid eye movement [REM] sleep late at night)

-Dizziness or fainting when standing up or after standing still

via Penn Medicine

MSA in general is considered a rare disease, and affects 3-4 people in every 100,000.

There are currently no treatments to cure, slow down or reverse MSA. However, some medications and physical therapies can help the symptoms.

via Movement Disorders

Research into the disease is relatively new. The hope is that trials and studies, such as the ones Dad is striving to participate in, could lead to treatments in the near future that could benefit many others. Just this year(!), The Michael J. Fox Foundation was able to identify a Parkinson’s Disease biomarker through its Parkinson’s Progression Markers Initiative study which required thousands of participants. While my dad does not have Parkinson’s, this is majorly significant in that science is, at this moment, paving the way in diseases that affect nearly identical brain regions as with MSA-P. This is a first step towards treatments and ultimately, a cure.

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My dad received his official diagnosis of MSA-P at age 57, around this time last year. For years he had suffered from restless leg syndrome, vivid dreams, and had in recent years started feeling really tired. Then he started having balance issues and trouble walking.

It made it difficult for him to do his work as a residential general contractor who took immense pride in his work and to do what he loved: playing Funk music and sea fishing.

He became too tired to drive and my mom took over driving them both. He couldn’t stand when he played his trombone because of his balance issues at his last performance with his band, Bump City Brass, at Balboa’s Summer Concerts in the Park last year.

It’s been extremely difficult to watch Dad’s decline as his daughter, and I can’t imagine how it is for either my mom or my dad.

MSA-P takes both the afflicted and their loved ones on a rollercoaster. That’s the best way I’ve found to describe it. There will be hopeful signals that Dad’s getting better, and then known and new symptoms will emerge, again and again, just when you think you’ve gotten through it. Caring for a loved one with a serious and debilitating disease takes a village of support and actual care, and while many of our family members have stepped up to help, for which we are extremely grateful, at this time what we really need is a compassionate and committed, medically-trained caregiver and more consistent physical therapy.

Mom is my Dad’s care partner. My entire life, my mom has been a force of strength and selflessness, and is doing the best she can right now to give my dad the best care at home.

It’s not easy, it’s very difficult. Mom is 5’3 and Dad is 6’1. She’s taken up many new responsibilities that can be dangerous for her own physical health, and though we are able to help as often as we can, Mom is the one who is there day in and out caring for my dad, making sure he is comfortable, getting him to the hospital–all of the things. This is not sustainable as my mom needs to protect her own physical health, find some moments of rest and because she will soon need to go back to work from which she is currently on personal leave. While we can afford to outsource some caregiving currently, all care is out-of-pocket, and currently, the average pricing for a caregiver is around $30/hr, minimum 8 hours a day, or $4,800 a month. That’s simply something that is not financially sustainable for us.

Our family needs your help. It’s not easy to ask. We need donations to be able to work with a caregiver that is medically trained, compassionate and present, to allow my mom to rest, physically and emotionally, knowing that my dad has proper care at home. We also need funding to find a physical therapist that can come to my parent’s home more frequently to help my dad regain his strength and ability to stand and walk in order to enter the clinical trial.

I thank you in advance, from the bottom of our hearts, for donating to help us with Dad’s care. Your donation of any amount and kindness is so very appreciated.

With deep appreciation and hope from the Lozano Family,

Phil, Lety, Jasmine, and Camille