Help Lesley Fight Against ALS

So, there is no easy way to break this news so we're just going to come out with it: My amazing wife Lesley has been diagnosed with the currently incurable and terminal disease that is ALS.   
 


What is ALS ?


ALS or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spine.   One of the most well known people that have had this terrible disease is Stephen Hawking.
 

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe.
  

The layman's explanation is that it's a terrible disease with no cure, no recourse, and no happy endings. 

 We first started noticing odd things with her hand earlier this year. Gripping and holding things such as car keys,drinks, and even her phone were becoming difficult with her right hand.  We thought it was just a pinched nerve or maybe even carpal tunnel syndrome.

 Unfortunately, after multiple MRI exams, extensive doctor appointments, and painful tests over a period of months, the diagnosis was made at the ALS center at the U of MN in early May of this year. 

It was the worst news that we could have received. 
 

Within a few months her right hand, which happens to be her dominant hand, has become mostly unusable and her right leg is now currently giving her problems as well.  It seems to be progressing pretty quickly unfortunately. 

 Throughout this diagnosis she has been still going hard at work and life and I couldn't be more proud.  She is the strongest person I know and I only hope to be half as strong as she is going forward.

 Not only is she still processing and dealing with her quality of life decreasing, she's still staying as positive and upbeat as she can, and still acting like the hippie I fell in love with.

 

The biggest problem with ALS (past not being curable at the moment) is that everyone's case and progression is completely different but the end result is the same. 

Best case scenario given by our ALS specialist is that my lovely wife will have 3-5 years left on this planet but that it could also progress at a much faster rate.  Just 5% of ALS patients live longer than 20 years.  The disease manifests differently in each person and there is no timeline that we are able to follow.  Our only hope is to try to live as normally as possible while we can.  
 

Her father passed away from this disease around the same age and in her case this is a familial case of ALS.

Only 5-10% of all cases in the US is FALS. 

Due to her hitting some specific genetic markers we are currently enrolled in a clinical trial in St. Louis involving a new drug that is being tested.  This involves us traveling to St. Louis every other week for a few months while she gets spinal injections of either the new medicine or possibly a placebo (hoping it's the former!)
 

It is not promising a cure and will mostly be used to help people with this disease in the future, but the hope is that it may slow down the manifestation of the disease and it's looking like this particular drug may just do that.  It's better than nothing but will also take a lot of time out what time we have left together to go through this process.
 

Seeing as we fall into the category of GenX/Millennials/a huge chunk of the country/  we have been living paycheck to paycheck since we first got together back in 2007. 


Just recently we got to a place where I was able to pay off all of my personal debt, and was able to save some money in hopes of buying our first house this summer.  We were jumping head first into adult hood for real this time. 
 

Unfortunately, that is not going to happen now.  The money we have saved is now being used for medical bills (of which there have already been many and will be MANY more) , legal bills, end of life planning, etc… and to try to pay off her debt accumulated throughout her 20s. 

Based on the first few rounds of bills, our savings may be depleted within months.  Medical treatments are quite expensive as are the special equipment that she will need to use when the disease progresses far enough.

 Couple that with the fact that at some point she will need to quit her job and get on disability and the fact that my current employment (of over 20+years) is not a sure thing in the upcoming year, everything is feeling much heavier than normal.
 
Obviously there are programs out there that assist with day to day activities but nothing is guaranteed.  Most of the things needed for her will have to come out of pocket in some capacity.

 
All I want to do is to make the time we have left together fun and not sad, and I'd like to try to take my wife on vacation to places we always thought we'd have time left to go to while she is able to walk on her own and be independent and do anything and everything I can to allow her to enjoy her time left.
 



Having to watch someone you love slowly get sicker and sicker with no light at the end of the tunnel is not something I'd wish on any one. 

 


Just a scant few months ago we were arguing about the logistics of Ant-Man defeating Thanos and being excited for the new Star Wars movie and now we have to discuss the logistics of burials, wills, end of life discussions, and what's going to happen when we are unable to take care of her and have to move her into an assisted living place. 

 

I cannot lie, while she's the one diagnosed with this heinous disease, I'm slowly dying inside as well.  Not being able to do anything but make her laugh and to try to take any stress I can from here is the best I can do and it's just not enough.  I wish I could fix this but I cannot. 

 
Asking for charity or even help is not something we take lightly.  In fact, we debated even doing this.   Unfortunately, thoughts and prayers (while incredibly nice and thoughtful) do not help pay the bills or assist us in any way but maybe if people donated a few bucks, just maybe we'd be able to knock off some of Lesley's bucket list plans while she is able to walk and be mostly self-sufficient and to also use for the mounting medical bills that will be coming in the future.

 
Even if you are unable to donate to us, if you could just share our story with your friends and family, maybe the power of the internet can help us deal with this life changing news and we can make the remaining days as awesome as possible.

 
And if anyone knows Dave Matthews or Matthew McConaughey please tell them she is one of their biggest fans.


 

 Thank you to all who share, donate, and send thoughts our way.  It is greatly appreciated.

Rob Hughes - Lesley's husband