Please help Mary live with ALS

My intention with the following lines is not to offend anyone or make anyone feel guilty. Only to paint a picture of what it's like living with ALS. Now this is from my point of view so take what you will from this.

In fair warning this picture I'm attempting to paint is not hopeful, it's not optimistic and it's not positive. It's ugly and heartbreaking but it's real.

Many of you participated in the ALS ice bucket challenge last year. Shortly before this challenge went unbelievably viral my mother in law, Mary was diagnosed with ALS.

It started out as some light cramping in strange places like her feet and back. Slowly she started to loose the ability to do little things like open a zip lock bag or a lid. Not thinking much into it she asked the doctor about it who advised that she may need more potassium.

Only months later she then began having muscle spasms that resembled the look of something crawling under her skin. We convinced her to go to the doctor to find out what could be going on. We never expected to get such devastating news.

What horror it must be to hear that you are sick, there is no cure and there is nothing they can do to help you. And to think this brave, strong woman was all alone when the doctor gave his nightmare of a diagnosis. It was unbelievable, my first reaction was that he was wrong and to get a second opinion.

She and her husband Paul went to the mayo clinic in Jacksonville to confirm the first doctors findings and sadly he was correct. Rarely hearing of ALS none of us really new what it was, how it affected you or what to expect. We researched and prepared as best we could. Unfortunately, you're just never really ready for something like this.

Everything just seemed to snowball after the diagnosis. She seemed to go through these cycles of decline. Every few months a batch of abilities were being stripped from her. None of us could have been ready, no matter how hard we tried, for what was to come for Mary.

Now I want you to do me a favor.
I want you to imagine what it would be like to slowly lose every ability involving your voluntary muscles, bit by bit. Imagine one day you're fine and then out of nowhere you start to notice you can't control your fingers like you used to.

You start experiencing spasms all over your body because your muscles aren't getting the nutrition they need then they begin to atrophy. Then slowly you're able to walk less and less. You're unable to lift things larger than a small cup of water.

Eventually it takes every ounce of strength and will to take two assisted steps in order to transfer to and from your wheelchair where you spend all of your time, outside bathroom breaks and lying in bed.

Then you start to notice your lungs aren't moving the way you're brain is telling them to because the muscles around you're diaphragm are dying. Imagine the frustration and anxiety of only being able to lay in bed if you have a machine that forces and extracts air from your lungs.  

You have to use a machine that makes you your lungs mimic a cough so they don't fill up with fluid putting you at risk of pneumonia.

Imagine not being able to get out of bed in the middle of the night to go pee, feeling guilty for waking someone up because you can't do it on your own. Picture losing the ability to shower yourself and having to sit in a shower chair completely exposed while someone bathes you.

How would you feel if you could no longer clean yourself after using the bathroom and a caregiver like your husband or daughter or sister had to wipe for you?

How would you handle getting to a point where your whole body had to be wrapped in a sling, hanging by a hydraulic lift, swinging around while someone transferred you from a bed to a wheelchair or from a wheelchair to a toilet?

What if your arms started to lose strength and you could no longer lift or move them to feed yourself or scratch an itch. Or how about you start to lose your ability to swallow or talk.

Imagine that's just a few of the things you can't do anymore. Imagine it seems as if the list is never ending.

Until eventually you are a soul and a mind that works perfectly fine lying in an unusable, unmovable body...

Imagine your family scrambling all around you trying to help you through this and all you feel is constant loss, relentless pain, and guilt.

Feeling like you just want to end it and give up, all the while trying to accept the fact that you are dying. At some point in the near future you won't be alive anymore. Picture putting on a brave smile for your friends and family and pretending like none of this is getting you down.

How would you handle an expected 2 to 5 years of dying like this? Then on top of it all you can't afford the necessary equipment or care needed to ease these transitions and daily tasks. What would you and your family do if this happened to you or a loved one? 

Probably the same thing we all are doing.... You would do what ever you could.

For those of you who never participated in or don't remember the first fundraiser this is an update. When we originally opened this account we requested $5000 in donations to help with equipment and travel cost associated with doctors visits.

We were so grateful to have received a little over a thousand from those of you who so graciously donated to help Mary. It meant so much and really made things easier on her and the family at that time. So, thank you again!

However, that was over a year ago. Months have come and gone since then and her condition has progressed more and more.

Nothing could have prepared us for everything that laid ahead. It has been one struggle after another. Sadly, all available money has been exhausted.

It is a huge hit to the pride to have to ask for help but we don't know what else to do. I hate to ask, but I have to try something. Please consider donating. No one deserves to struggle with the things she and this family have been slammed with over the past year and a half.

If you can't donate please share this to spread the word. If you can't donate money but have some equipment or labor you would like to donate please let us know. We will take any help we can get at the moment.

We have some items that are vital to assist Mary in living with this horrible disease. First is a different hoyer lift that is easier to push and lifts her high enough to be placed on the bed, she does have one at this time but we are experiencing difficulty trying to use it. It is quite old. And does not function as well as we need it to.

Secondly, we are needing to rip the carpet out of the bedroom and lay down some linoleum or something of the sort so that we can push her in the lift, as it is extremely hard to do on the carpet.

Lastly, we are needing to tear out the double sink and cabinets to make more room in the bathroom for accessibility to the toilet and shower.

Mary's husband Paul works full time, on top of coming home and being a caregiver to Mary in the evenings. He has utilized every option possible. Overtime, savings, retirement. He has reached out to the insurance company for everything they can offer. He asked our state officials with help in getting social security or disability and there was nothing the could do to help. Friends and family have pulled together and are doing everything possible. Despite our efforts, Resources are drying up quickly. I know that he must feel so overwhelmed at this point with how rapidly the list of necessities seems to be growing just to help Mary complete everyday tasks.

For those of you who don't know, I am her daughter in law, Aja. Her sister Sharon and I take turns traveling from Lakeland to be her caregiver while Paul is at work. I stay a few weeks and she stays a few weeks, other family members come and help with things like cooking and cleaning when they can and we are all sticking together and doing our best.

We are all trying to be as strong as we can through this journey but it is vital that we have the right environment and tools to take care of Mary. If Mary or one of ourselves gets hurt during the process of all this, it is only going to make matters worse.

Today, I was helping Mary to the bathroom and she took a fall and broke her ankle on top of everything else. Those will be the last steps Mary takes. We will need to solely use the lift for transferring from this point on. My hopes are that we can raise enough money to pay for a better lift, fix the floor and bathroom and cover the cost of any other equipment that will help  with all of this.

I know that God is looking out for Mary and our family and that he will get us through this. We will remain strong and keep pushing forward for her. Thank you in advance for any help you can give. God bless.
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Aja Sandian Beville 
Alachua, FL
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