Help Laurie Stay in Her Home!

 

She made the lives of over thirty people important again every day for those 20 years with respect and independence that we all take for granted. There are programs like this all over the country. What made this one different was that Laurie ran it with her heart. The program offers a place that gave the residents a real feeling that this was their home. It was, but what made it that way was the relentless effort and personal sacrifice that Laurie made day in and day out. Some of her residents (friends) had come from homes where the families can support them while others were once institutionalized and forgotten. She made a home within her program for each one of them and their families to visit. She would even occasionally bring one or two of them home for the holidays.

Even while she worked an average of 10+ hours a day, she also raised a wonderful son, supported her household, and even offered her parents to move in with her to be closer to them. To say Laurie was a hard worker would be an understatement!

 

In early 2014, she began to have notice small issues with her speech and muscles.  Over the next several months it became clear that something more than tender muscles and the occassional slurred word was the problem.  She was referred to a Boston hospital by her doctor where she was tested for every possible disease that could be doing this to her.  

 

After none of the tests came back positive, there was only one diagnosis left.  The doctors called her into the room and gave her the news, "Laurie, you have ALS, or what is commonly referred to as Lou Gehrig's Disease."

 

Immediately we started asking "are you sure?", "could it be something else?" but unfortunately, because the only way to diagnose ALS is to rule out every other potential cause, they were sure. 

At first, she wasn't like what the books described the disease to be. Laurie didn't use a wheelchair or life comforting machines like a Bi-pap or nebulizer. We did not know what a "cough assist" machine was or the fact that it even existed. We would soon learn about them...way too soon! This disease is mean. It makes you think it stopped for a month or two, then suddenly you are on the floor or choking on water. It has taken many people more famous than Laurie, but none more important to us and those that have met her.

Laurie met with her ALS specialist neurologist Dr. Attasi at MGH in Boston. It was confirmed several more times with advanced tests that it was ALS. Her son carries the genome for the same type of ALS, but there are no signs of it in his body now.

Over the next 18 months, the disease started showing its ugly side. First aches and pain in her shoulders and arms, which was no problem for her because her focus was on her family and her residents. Then her speech started to disintegrate.  As it got worse, her job asked her to take early disability/retirement which she had no choice but to do.  This broke her heart and took months for her to get used to not waking up, getting dressed, and wanting to head to work. 

 

About two years ago, she fell walking out of her bedroom. She brushed it off as just slipping on the hardwood floor in socks. But we all knew, including her, that this was a start of another change. Shortly after that, she was using a walker, though she made it look like she didn't need it, her dependency was becoming more and more apparent. 

In the last 15 months she has needed assistance, help around the house is how it started and now has turned to personal care, showers and toileting, getting in and out of bed. Besides the fact that her fingers are permanently curled from muscle atrophy, her ability to walk is gone without significant assistance. ALS affects the muscle and control of those muscles. Lauries most devastating attack on her muscles has been that of those in her throat and mouth. She can no longer eat orally and has now for over a year now has a g-tube port in her belly for feeding.

Now, the reason I am asking for your help. The insurance company will only pay for 132 hours of assistance for every two week period. That leaves her uncovered and at risk for over 200 hours each two week period.  I have been covering the difference for the past 2.5 years, but I am about to lose my career because I am working four 24hr days in a row each week with her and her ALS has advanced yet again. She is now at risk of losing her house and being placed in a nursing home. I don't think I need to tell you what that will do to this beautiful woman's quality of life and mind. Nursing homes are tough enough to stay in temporarily, but we have found none that have experience with ALS clients. She would be dead within months because she will give up. We just want her to be able to stay home for her remaining time where she belongs until her last days or medically it will be required to transfer her to a care facility.

Our goal for the remainder of 2018 is to raise $20,000.  This money will help cover the costs of the additional in-home care needed to safely stay in her home, sleep in her own bed, and live out the rest of her life in as much comfort as possible.  

 

Thank you so much for reading this and for anything you can donate!

Thanks,

Alex