Family shares struggles of life with ALS

Man's life changed after being diagnosed with ALS

WINDHAM, Maine (NEWS CENTER) - Dealing with health insurance can be a frustrating process.

Having claims denied, refiling them, being put on a waiting list for equipment you need. Trying to cut through the red tape has been especially frustrating for one family from Windham, because time isn’t on their side. Their family member has been diagnosed with ALS or Lou Gehrig’s disease and it’s unclear just how much time he has left. 

The Ice Bucket Challenge has created a lot of awareness about ALS, but what we don’t know about are the daily struggles of families impacted by it.

Last summer, like many people, Peter Archer took part in the Ice Bucket Challenge to raise awareness and money for ALS research. Little did he know, several months later he would be diagnosed with the disease.

“They tell you, you have a terminal disease and there is no treatment of any kind”, he said.

Just like that, time was longer on Peter’s side.  

“I could live anywhere from 3 months to 5 years and there’s no way to tell”, he said.

The news rocked his family.

“From that moment, my life and my families lives have changed”, said his son Mark Archer.

Over the next few months they would learn about the difficulties of navigating their way through Medicaid. They tried to get him the first FDA approved drug for ALS in more than two decades. Radicava eases muscles spasms and reduces fatigue. After initially rejecting his claim, the insurance company relented.

“To get a response you need to be incredibly persistent and be your own advocate”, said Mark.

But it had to be administered at a medical facility 147 times a year. Peter has difficulty just getting from one room to the next.

“They don’t supply home infusions, I can’t get to an infusion center multiple times”, he said.

Again, after fighting back, the insurance agreed to home visits a few times a week, with family members administering it the other times. Now the fight is over a motorized wheelchair. Peter has been told he could be on a waiting list 6-months to a year and a half.

“It’s not Medicaid in particular, its insurance companies in general not, I think, fully grasping the reality of diseases like ALS”, said Mark.

Thankfully Peter has a great support system around him.

“We have a very close family. We’re a team, it takes a village. It most certainly takes a village”, said his wife Lynne.

Peter says he’ll continue to fight to make sure he can make the most of the time he has left.

“You can’t give up. I try to keep a good attitude, with a very loving family”, he said.

Peter and his family are grateful for the ALS support group they attend once a month. There they get support and advice for helping make Peter more comfortable.

The big thing right now is to equip his home with ramps and equipment to help him stay mobile. His family is planning a fundraising event and they have created a Go Fund Me page, Peter's Battle With ALS, to raise money. 

© 2017 WCSH-TV


JOIN THE CONVERSATION

To find out more about Facebook commenting please read the
Conversation Guidelines and FAQs

Leave a Comment