Kathleen’s Battle Against ALS

*Update 6/6/2023:

Hi everyone. Wanted to come on here a give a much-needed update on behalf of my mother and our family. To all of those who have expressed love, support, and donated, it is beyond appreciated. We are forever grateful to you all! To say this road is hard would be an understatement. Explaining the last two months could take a while. But to keep it somewhat brief...

This disease has been flying like a snowball down a hill. My mother's progression is like rapid fire. In just the last two months my mother has declined to where we need 24/7 around-the-clock care for her.

If ALS wasn't already enough she is now suffering from Frontotemporal Dementia.

FTD takes away her ability to understand reading and writing and verbalize her needs from total loss of speech, a complete lack of awareness and judgment, and weakness in her legs becoming prone to falls. She can become severely impulsive and become a danger to herself or others without recall.

ALS has completely trapped my best friend, my mother inside a body that is no longer functioning. Now FTD is stripping her completely of her memories, ability to regulate emotions, function to express or communicate needs and wants, & the wife, mother, grandmother, sister, and friend she is... We all love her dearly, and it is beyond heartwrenching to see her suffer through this.

We try to hold onto our good days, power forward for the ever-coming changes, and bring joy and laughter where we can- good company & enjoying her favorite things when willing. We are spending as much time as we can with her as a family. But every day we have been losing more and more of her, and her personality. We embrace the inevitable changes with grace and cherish the time we have and that is something this trial in life has taught me but will take me years to recover from.

Many long-term facilities do not specialize or have staff-equipped or trained professionals in ALS care/behaviors/progressions. So we have been bounced around from facility to facility. This has been very difficult for my stepdad & I who are at the forefront of finding her proper medical safety and ensuring she's living out her best life with quality and dignity. Mom medically requires and resides in a secure assisted care facility. Living situations in her third-floor apartment with no elevator are not ideal for her and unfortunately, as much as we wish she could be home, having FTD her safety is the number one importance.

For proper care and treatment, we are ensuring our facility is willing to learn and help provide accurate care for my mother's case. This has been very challenging to raise this awareness thus far through transferring multiple facilities, has cost thousands of dollars to get her the right 24/7 care required. We are awaiting Medicaid currently which will drain all my stepfather's assets while my mother pends for approval to carry on with the essential 24/7 care she requires.

We are working alongside our hospice team, and the ALS association to advocate for the best care possible and make our team at the facility she currently resides aware of her specialized needs and provide the proper knowledge to give her the best care.

Your prayers, support, & donations are greatly appreciated and if you know anyone suffering or can shed light on a similar journey feel free to reach out.

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04/07/2023:

I don’t know where to even start writing this. My beautiful mother, also an amazing grandmother, wife, sister, aunt, and the best friend you could ever have, has received and has been enduring the most life-altering diagnosis.

At just 62 years old my mom was diagnosed with Bulbar Onset ALS.

Bulbar Onset ALS, is one of the rarest and most aggressive types of ALS that starts in the face and neck. Bulbar Onset ALS only accounts for 20-25% of already rare ALS cases. It progresses faster than limb onset while causing the majority of the worst symptoms of ALS.

In just the last two months since diagnosis, she has almost a total loss of speech, loss of being able to swallow properly and a high risk for choking which has changed eating for her from being pleasurable to a complete burden. Her breathing has been severely compromised as well. Any task severely drains any energy she has and leads her to be very short of breath.

ALS can strike anyone, and presently there is no known cause or cure. It is a progressive, fatal neuromuscular disease that slowly and in some cases quickly robs the body of its ability to walk, speak, swallow and breathe. The worse part about this disease she is enduring what is the absolute torture of having a sound mind inside a deteriorating body.

Despite all of this, my mom is trying to fight but it has not been an easy road this disease is progressing so fast. and will continue to get harder. Her grandkids, family, and friends are the biggest lights in her life. She’s trying every day to battle through all these progressive changes and still crack a laugh with us because she is a fighter. However, this disease keeps persisting.

She is communicating through her iPhone and communication devices. Trying to make the necessary nutritional changes. She is now relying on a noninvasive ventilator to help with breathing and maintaining energy levels. In every task, she has to make sure she conserves all her energy without over-exerting. None of this is second nature.

Your donation can help us provide for her wishes, and financial help to support them as my step-father awaits family leave with a set number of days of compromised income, as well as the assistance she needs and the comfort she will require as she declines. As well as allow us as a family to provide care and be there during this time for her. Anything will help and is beyond appreciated from the bottom of our hearts.