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Personal Amount Raised
Personal fundraising goal: $3,000.00
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WHY I RIDE.....
I will be participating in The ALS Association Golden West Chapter's 19th Annual Napa Valley Ride to Defeat ALS and Walk, on Saturday, September 23rd, 2023.
My motive and goal is to honor my "Mamasita," Lupie Anna Velez who was diagnosed with PLS (Primary Lateral Sclerosis) in October 2015, and went to heaven on February 18, 2017, by bringing awareness and support to her disease through joining the efforts of the ALS Association. Her local chapter was the Golden West Chapter, Stanislaus County where she attended monthly meetings and special engagements to receive support from other members who had been diagnosed with PLS and ALS. In the time she attended these meetings she was deeply moved by the people she met as she often would share with me when we spoke on the phone. After her death, I found out how the people in those meetings were deeply touched by her loss and what an impact her laughter, smile and presence had on them.
Her disease, Primary lateral sclerosis (PLS) is a rare neuromuscular disease characterized by progressive muscle weakness in the voluntary muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor Neuron Diseases (MND) are any of five neurological disorders that selectively affect motor neurons, the cells that control voluntary muscle activity including speaking, walking, swallowing, and general movement of the body.
Of the 5 degenerative brain diseases making up Motor Neuron Diseases, PLS is essentially the rare one of the 5. This incurable disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. PLS is caused primarily by degeneration of the upper motor neurons in the brain and spinal cord, which results in increasing spasticity and weakness of voluntary muscles.
Like ALS, primary lateral sclerosis (PLS) is a progressive degenerative disease of the motor neurons. It is characterized by progressive spasticity (involuntary muscle tension and spasms) and it affects the lower limbs, trunk, upper limbs, and bulbar muscles, usually in that order. The primary difference between the two is that in PLS the spinal motor neurons or lower motor neurons stay intact. and progresses more slowly than ALS, and in most cases not fatal.
PLS and information about it is extremely rare, so much so, that it generally takes up to 3 years to properly diagnose. Certified ALS Clinics only treat PLS and ALS patients through specially tailored programs and protocols. They have the experience and resources to assist the afflicted and family.
It took approximately two and a half years before my Mamasita was diagnosed with PLS. Initially, her diagnosis was asthma because she began having difficulty breathing. She then began experiencing feelings of unbalance and as if she was in a "fog." We continued to see a variety of specialists from Allergists, Otolayngologist, Pulmonlogist, and Neurologists to figure out what excatly was going on with her.
After two years of doctor visits and testing she visited a doctor who suggested the issue didn't sound like something within her lungs but her throat, specifically her vocal cords. After several visits to multiple Otolayngolgists, she was initally diagnosed with bilateral vocal cord paralysis and given options to treat her condition. After my mother's continued medical concerns about her unbalance she decided to visit a UCSF Neurologist for one last diagnosis.
After being under her care for about 6 months the doctor finally diagnosed my Mamasita with PLS. From that point on she was monitored closely and tested frequently, sometimes having to spend hours with the doctor and other specialists on her team. I attended several of her appointments and sat with her for hours as she was tested and given information on how to manage her disease, since there is no cure for PLS. Sadly, as I did my own research, there truly isn't much information available since it is such a rare disease and difficult to diagnose.
It was difficult to hear my Mamasita share her continued physical pain and unwell feeling but she was a fighter and would often share with me how she was trusting God through it all. Her favorite bible scripture to share with me was Proverbs 3:5-6 which says, "Trust in the Lord with all your heart and lean not on your own understanding;in all your ways submit to him,and he will make your paths straight."
My mamasita had been so excited about her support group that she shared with my daughter and I how she wanted to participate in an ALS walk. Unfortunately, she went to heaven before we got the opportunity to participate and push her in her wheelchair across the finish line. But I am determined to involve myself in this cause, by raising awareness and to support others with PLS, ALS and similar diseases. You can do your part by either joining my team, making a financial donation (VERY APPRECIATED) or by sending me non-stop prayers and words of encouragement throughout my training! Please share this information with friends and family.
Thank you for taking the time to read my page and whatever support you can offer! Go "Team MAMASITA!"