Patricia's fight against ALS

Hello, my name is Patricia, and I was diagnosed with ALS or Amyotrophic Lateral Sclerosis in November 2017 at the age of 56.

ALS also known as Lou Gehrig’s disease is neurodegenerative disease that affects the nerves of the brain and spinal cord. This illness affects the body in a way that motor neurons of the body do not get signals from the brain, and therefore muscles in the body cannot move.

This illness started to take a hold of me back in 2014 when I started to feel extremely tired after completing household chores. I would continually take 10 to 20 min breaks after completing small tasks. It took about three months of me feeling this way that I decided to seek medical attention; to which my doctor passed off as symptoms of menopause.

Time continued to pass and I kept feeling the same or worse. By the middle of 2015 I was beginning to have many falls when I would walk or climb stairs. By this time, my doctor and I could see my symptoms were greater than menopause and I was referred to a neurologist. Unfortunately, no appointments were available until the END of 2016. While I waited for my appointment with the neurologist, my body continued to deteriorate, losing strength in my arms and legs. By the middle of 2016 I would have to take one-hour breaks to do 15 min tasks, because I wouldn’t have the strength to go any longer.

In August 2016 I had to be rushed to Highland Hospital Emergency room because I felt so weak I could not get out of bed by myself. I was hospitalized there for up to two weeks while doctors ran all types of medical tests on me. After my two week hospitalization I was told my diagnoses was CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), which also a neurological disorder, but only affects the arms and legs as opposed to ALS, which affects the entire body. I was given medication for CIDP for three months with no positive result. More tests were done including a biopsy. My doctors then told me my illness was Polymyositis and continued to prescribe me more medication, this time combating the new diagnoses, again to which no positive results were given.

Starting 2017, my doctors at Highland Hospital in Oakland started to give up on my case because they could not find the true root of my illness. That is when they decided to refer me to UCSF Hospital in San Francisco. Once again many test were completed at their facilities and by November 2017 they concluded that my definite diagnosis was ALS.

My illness has advanced in such a manner that at this point I have no strength to even take care of myself. I need to be assisted in eating, showering, getting dressed, or even turning around in my bed. One of the few things I can still do is have communication with my family through text messaging because I still have strength and movement in my fingers.

At this moment my family’s only source of income is my husband’s job as on Uber driver. My illness has caused a large financial strain on my husband since he is the only source of income and he has to leave work to come home and check on me and help me if I need it. There have been times where my husband will have to race home from San Francisco to Hayward while working, to come help me use the bathroom. I need 24 hour care from a skilled in-home nurse that can help me in my day-to-day living.

 I cannot put into words how difficult this journey has been for my husband and myself. There is no cure for ALS, but we have the trust and faith in God that a cure will be found for this horrible illness.

All donations given to this GoFundMe account will go towards an in-home nurse, funding for treatments (western & alternative), therapies and medical equipment needed.

 My husband and I thank you for taking the time to read our story; if you find it in your heart to help us out and donate, we would highly appreciate it. Thank you again and God bless you.


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Hola mi nombre es Patricia y recientemente en Noviembre del 2017 fui diagnosticada con ELA o Esclerosis Lateral Amiotrofica a la edad de 56 años.
ELA tambien conocido como enfermedad de Lou Gehrig’s, es un padecimiento q afecta los nervios del cebrebro y la espina dorsal.
 
ELA afecta la comunicacion q el cerebro manda a los musculos para hacer movimientos de piernas y brazos, bloquea la comunicacion entre cerebro y musculo provocando paralisis en diferentes partes del cuerpo.
 
Los sintomas empezaron en el año 2014 cuando comenzaba a tener fatiga excesiva por hacer tareas de la casa q comunmente no me fatigaban. Tenia q tomar periodos de 10 a 15 minutos  de descanso entre una tarea y otra para no sentirme agotada.
 
Despues de sentirme asi por 3 meses acudi al medico para q me revisara. El doctor me dijo que eran sintomas originados por la menopausia.
Para mediados del 2015 mis sintomas y debilidad en brazos y piernas empeoraron de tal manera q tuve un par de caidas en mi casa por q las piernas simplemente no tenian fuerza para sostener mi propio peso parada.
 
Despues de estos insidentes fui referida a un neurologo a finales del 2016, para este tiempo  ya no podia caminar por mi misma sin ayuda de una caminadora para adultos y aun para caminar distancias cortas dentro de micasa el agotamiento era excesivo.
 
En agosto del 2016 fui llevada de emergencia  al Hospital Highland de Oakland despues de que no tenia suficientes fuerzas para pararme de la cama por mi misma.

 Estuve internada por dos semanas mientras me hacian todo tipo de tratamientos y estudios medicos para determiar la causa de mi debilidad muscular. En ese momento los doctors me diagnosticaron CIDP o pPolineuropatía Desmielinizante Inflamatoria Crónica , el cual tambien es un desorden neurologico pero con caracteristicas diferentes al ELA.

Recibi tratamiento contra CIDP por 3 meses sin ningun cambio, mis doctores mandaron a hacerme hasta una biopsia de un musculo y me dieron un tercer diagnostico q era Polymyositis y continuaron recetandome medicamentos q nunca hicieron efecto benefico alguno.

Empezando el 2017, mis doctores del Hospital Highland de Oakland empezaban a desesperarse y darse por vencidos conmigo por q no encontraban soluciones ni la raiz del problema, fue ahi cuando  ellos decidieron transferirme al Hospital de USCF en San Francisco. Una ves mas infinidad de estudios fueron realizados y para noviembre de 2017 llegaron los doctores del Hospital UCSF en San Francisco a la conclusion definitiva que el diagnostic correcto todo este tiempo es Esclerosis Lateral Amiotrofica.

Mi enfermedad ha avanzado de una manera tan rapida que al dia de hoy no tengo fuerzas ni para hacer mis cosas basicas personales como tomar un baño , comer, vestirme etc. Ya  solo tengo un poco de fuerza en mis dedos. Las unicas cosas q solo puedo hacer por mi sola es manipular un telefono celular o un control remoto.

En este momento mi esposo Juan es la unica fuente de ingresos en nuestro hogar y sus horas de trabajo se ven afectadas por q necesita estar regresando a casa a atenderme cada ves que lo necesito.

Aveces el tiene q venir desde San Francisco a Hayward de emergencia cuando tengo q ir al baño o me atoro con algo,lo cual a causado un estress enorme en nuestra persona y  nuestra capasidad economica.

A este punto necesito una enfermera o caregiver conmigo todo el tiempo para que me ayude en las necesidades basicas de cada dia.

Es dificil poner en palabras lo complicado que ha sido esta situacion para mi esposo y para mi los utimos meses. La Esclerosis Lateral Amiotrofica  es una enfermedad de la cual no se tiene una cura al dia de hoy pero nosotros tenemos nuestra confianza y  Fe en Dios de que solo El puede curar este terrible padecimiento.

Todas las donaciones recibidas en este GoFundMe seran utilizadas para pagar una enfermera o caregiver, tratamientos, medicinas, terapias y equipo medico.

Mi esposo Juan y yo agradecemos el tiempo tomado para leer nuestra historia: si en tu Corazon estuviera ayudarnos haciendo una donacion y/o compartiendo con otras personas  esta misma historia, seria de gran ayuda y muy apreciado.

Gracias y q Dios te bendiga.
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Organizer and beneficiary

Carlos Zedillo 
Organizer
Jennifer Zedillo 
Beneficiary
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