Debbie Champagne's Crusade

On Nov 16th, I stopped by to visit with my friend Debbie Champagne.  As you may or may not know, Debbie was diagnosed in September with ALS.  Normally a person lives with ALS for 2 to 5 years after diagnosis.  I was shocked to see how far her disease had progressed within such a short time.  She was limited in movement and was sitting in a power lift recliner.  Deb was unable to leave the chair without help.  She could not move her right arm and had limited use of her left arm.  She was able to read her Nook and use her phone with limited movement. Unfortunately, her phone does not have a mic and she must type everything in.  This takes time.  Ken had fixed her lunch and left it in an insulated cooler on a table next to her chair.  She was able to have snacks throughout the day.  We had a nice visit but it was hard to leave her knowing she was alone until Ken came home from work.  I also wished I could visit more and it hurts to know that it just isn’t possible.

Everything is happening way too fast.  Debbie was Kayaking down the Saco with the SkiWheelers in July.  In mid-September she was diagnosed with the illness.  Her last day at work was the day after Columbus Day.  On October 21st, she and Ken were married.  They have a wonderful picture taken on their wedding day.  Debbie is holding her grandson, Liam.  I don’t think she could hold him now. 

Barry and I made plans to visit today.  The guys went off to retrieve Ken’s remaining lobster traps while Debbie and I visited.  Things have changed even more in the past two weeks.  She is losing the use of her left arm.  She is lucky that her sister lives close by and can stop by everyday to feed her lunch.  It is becoming harder for her to use her nook and her phone.  Debbie told me it won’t be long before she won’t be able to access her Nook, Facebook or even her phone.

Until recently, Debbie was able to use a walker with an arm platform if someone helps her get her body standing up in it, she could walk a few feet. Now she can only stand with the walker and then only with someone to help her.  She believes within the next week or two she will not be able to stand on her own.  She can’t sit up straight because she will hunch over and can’t hold herself up as it has affected her mid back.

A hospital bed was delivered a few weeks ago but they are still waiting on a specialized mattress to be delivered.  At this time, Debbie is in the recliner all day and night.  Next week a ramp will be installed making it a little easier to get out for her doctor appointments.  She has a wheelchair but is investigating getting an electric one.  This is still a discussion in the beginning stages.

Right now the VNA comes in for an hour 5 days a week.  This service won’t be available for long.  Once custodial care is needed, the insurance will no longer cover the costs.  The cost to have assistance during the day while Ken is at work will be at their own expense.  Debbie will need home care on an on-going basis.

Those of you who know Debbie, know how positive she always is.  We had a wonderful visit with her and Ken.  They were both talking, laughing and teasing each other.  She said to me, “I have to hope that I can get the treatment needed to stop the progression or hopefully even reverse some of the symptoms”.  “I want to see my grandson grow up.” “I want to spend more time with my children”.  “I want to make plans with my husband for us to retire and spend our lives together.” 

I know so many of her friends want to help her but don’t know how or what they can do.  It is for this reason I am starting this “Go Fund Me”.  They are going to need so much support to pay for medical expenses and to have a sustainable quality of life.  If you have any questions, please feel free to contact me.  Sincerely,  Monika Farrington