ALS: This Disease Really Stinks

Weeks 3-5, Moving at Lightspeed

So many things have happened that it’s difficult to believe that mom was just diagnosed on February 1.  First and foremost, we had her first appointment yesterday, February 27, at Emory with Dr. Glass and his team.  We loved all of them.  Attending were mom (Kathy), dad (Henry), sister (Cindy), and me.  I’m the official note-taker and coordinator. 

Dr. Glass is very calm and thorough.  He was reputed to me to not have a great bedside manner, but I really don’t know why someone would think that.  He is upfront and factual, but also tactful and sympathetic.  After he spent time talking with mom and did her physical exam (with an intern present), he very quietly said to mom, “Unfortunately I don’t see anything to be able to overturn your diagnosis.  I’m very sorry that you have this disease.”  It was a profound moment.  He then moved on to treatment.  She’ll be taking Riluzole, which has been around for a couple of decades and is the only drug with proven results for ALS patients.  It is taken in pill form and has very few to no side effects for most patients.  We also found out today when her prescription was filled that under her Medicare plan, it is also cheap!  We will only need to be seen at Emory every three months, so this is very manageable. 

We asked about trials being conducted at Emory.  Mom is eligible for the four currently being conducted there, but Dr. Glass stated that when one participates in a trial, it is important to remember that one is not doing it to be cured; one is providing data for doctors for future patients.  I looked at the trials and the participation requirements were quite rigorous.  I believe Dr. Glass was gently trying to tell us that at mom’s (and dad’s) age, it would probably be too tough for her to try and participate in them.  I think mom felt the same way, because after he left the room, she said that she didn’t think she wanted to participate. 

After a very long day at Emory – about six hours – my parents were just worn slap out.  As we were leaving the building, my mom thanked my sister and me for being there and asked, “What do people do when they don’t have kids or anyone to help them?”  My answer has a lot to do with how I feel about my Visiting Angels agency and health care in general.  We have many clients who don’t have family members living close by or involved in their health care.  We often attend appointments with them.  I believe that everyone should have a health care advocate to attend important appointments, be it a family member, friend, caregiver, etc.  Someone must be present and with presence of mind to ask questions and make record of what is discussed, because the patient is most often too caught up in the moment and emotion to absorb what is happening.  My parents are too much in shock from the diagnosis and everything else going on to be able to grasp even the simplest of instructions right now.  This is not unusual. 

My parents are closing on their new home about four miles away from me this Friday, March 2nd!  And, miracle of miracles, my sister Cindy and her husband Carl have decided to buy my parents’ house.  It has been a real blessing to all of us in many ways.  The house won’t have to be on the market and Henry and Kathy won’t have to pay realtor fees and do all the things necessary to list a house.  They’ll be able to transition much more smoothly, and all our hearts are eased that our home will be staying in the family.  As completely insane as things have been, at the same time, it seems as if critical pieces of the puzzle have been falling into place.  As mom says, almost as if God is saying, “I know that this is hard, but look:  I’m going to do this and this and this to make sure that you’re going to be alright.”

It’s very strange to see my parents, who have always been so smart and capable and independent, to go from that state, to within a month needing the three of us kids to shepherd them through even basic decisions and plans.  Right now they are total shock victims.  I feel confident that now that we’ve been to Emory and have a game plan, and once we close on the house, we can let the dust settle a bit.  They just need some time and space to come to a new normal and adjust a bit.  I pray that Riluzole works well for mom and gives her a real slow down in her disease progression and that all of us can have some time to come to terms with her disease.  I pray that we just have more time.  I pray that my dad can find a reason to get back to his normal self (within reason – ha!).  I pray for my mom.  I pray that she is not one of the 10% of familial ALS patients.  I pray for guidance and wisdom.  I pray for my siblings and family members.  I pray for my little boy and his cousins, who will have to see their beloved grandmother decline.  I pray for my employees to continue to put up with my time out of work.  I just pray, and pray, and pray.  If you’re wondering, I’m putting this out there because I work with families dealing with these situations every day, and it is hard.  It is isolating.  It is overwhelming, and it is easy to be terrified and not know where to turn for answers.  Of all families to receive a diagnosis like ALS, ours must be one of the best prepared to deal with it – and it is still overwhelming, isolating, and terrifying.  So, if I’m able to reach a few people and help you to understand that you’re not alone, that you can find resources and other people to support you in your struggle, then I’ll feel that I’ve achieved a wonderful thing.  From ALS to Alzheimer’s/dementia to Parkinson’s – any devastating diagnosis – the grief is the same.  Navigating the medical system is the same.  We need each other and the knowledge that others have gained to ease the way.  Please don’t be afraid to reach out.

Each Visiting Angels agency is a franchise that is independently owned and operated. The Franchisor, Living Assistance Services Inc., does not control or manage the day to day business operations of any Visiting Angels franchised agency.