Many of you know by now that my mom (Age 55) has been sick for quite some time, original symptoms starting about a decade ago. After two primary cancers and multiple wrong diagnoses (including Parkinson’s), our current neurologist has settled on something my dad and I have suspected for a while now, which is Multiple System Atrophy with Parkinsonism. This is a rare degenerative neurological disorder.

You can learn more about it here: Multiple System Atrophy 

I am asking for help with the first 3 months of care as we struggle to piece together what comes next.

My mother is now in need of constant care, sometimes her medication works enough for her to perform some basic tasks like taking medication or eating and drinking, sometimes it renders her completely immobile for hours at a time.  Unfortunately with COVID-19, the nursing home she was previously in following her last hospitalization has had a large number of cases of COVID-19 and no longer considered a safe viable option. Besides, it is not covered financially as a long term option and she can no longer get into it without being hospitalized again.

After being released (early to "prevent" her getting COVID-19), she ended up contracting a UTI and then COVID-19. The infections messed with her medications making her bedridden and immobile at random times and for several days throughout the last few weeks, unable to feed herself, take her own medication, or readjust her body. 

She developed two bedsores and needs to be moved or help to move constantly to help those heal and prevent new ones from forming. 

I also contracted COVID-19 while caring for her.

My dad travels for work,  and I myself am not qualified for the constant care she needs.

We have applied for a variety of aid, disability, Medi-Cal, and other forms of financial help but it all takes at least 90 days at the minimum to be approved for anything as there are not a lot of options for those under 65 who have working spouses. 


The minimum care level which she requires when my dad is not traveling is twice a week at $32 dollars an hour.
That comes to $256 a week, and over $1000 dollars a month.

When he is traveling it will need to increase to every day that he is gone (usually 5-7 days). 
That comes to around $900 dollars for that week.

This means on an average month her care will cost $1664 dollars with no options for reducing that. 

That does not cover their rent, her medical bills (which unfortunately are over 10,000 dollars out of pocket for 2020), food, etc

We are looking for ways to help pull money together in other ways and applying to everything we can think of. But this is not optional. She needs this care now. 


What does this include? This is someone coming twice a day to...

-help get her out of bed in the morning 

-shower 

-allot and manage her medication

-meal prep appropriately ( she needs thickened liquids, etc)

- move and perform PT exercises

-help her get back into bed in the evening 

- and a small variety of other household tasks she can no longer perform on her own. 


There is also a deposit of a week's worth of care required to start her service. 


While my family is doing what we can at this time, we are asking for help so that she can have what is best for her right now. We are not asking for help with her many medical bills or medications. Her neurologist is working with us to get her a surgery that will help with medication management and to alleviate some complications that come with taking so many medications. This means we have to keep her off hospice care ( the only insurance approved service offered at this moment to those who are married and under 65 ) until this surgery is complete. 


I've organized this fundraiser to raise money to provide my mom with the level of care she needs, so she can be safe at home. Please consider helping us get her the care she needs during this time when it is not safe for her to be alone and nursing homes and other facilities are rampant with COVID-19 right now. As well as needing to maintain some independence for her sanity. 

I am asking for a few months of help, alleviating some of the physical, financial, and mental stress and strain this has put on our family.

Here is a short overview of MSA:


Multiple System Atrophy (MSA) is a rare neurodegenerative disorder that can cause different symptoms, such as impairments to balance and difficulty with movement, poor coordination, bladder dysfunction, sleep disturbances, and poor blood pressure control. The disease was first known as Shy-Drager Syndrome. At the moment, it is believed that MSA is "sporadic," meaning that there are no established genetic or environmental factors that cause the disease. A few reports have described families with MSA, but this finding is probably very rare. MSA is a disease that can impair the autonomic nervous system which is essential for controlling blood pressure, body temperature, digestion, and urination.  

Although many clinical symptoms are also present in patients with Parkinson's disease, patients with MSA typically show symptom onset at a younger age, with the average onset in the early 50s. The journey to a diagnosis can be long and difficult. (Ours has been 8 years) Many patients are diagnosed with Parkinson's disease first, but over time, the extent, severity, and type of symptoms change, making a diagnosis of MSA more likely.

One of the most important symptoms in MSA patients is the presence of sleeping abnormalities such as snoring and apnea, stridor, and acting out dreams. Subtle changes to a person's speech such as low pitch or quivering voice can also be noticed, and the clinician may notice symptoms that look slightly different from those of Parkinson's disease.

Please reach out if you have any questions.