Words of Wisdom

How to Thrive In Spite of ALS

ALS can be devastating physically, emotionally and financially.  However, there are things in your control that will ease this devastation.  You may even find the hidden blessings in ALS that will make this a tolerable journey for you and your loved ones.

Read on to find out about 5 key areas that will help you deal with this new challenge in your life:

1) You are not alone in this journey:

Even though ALS is classified as an orphan disease, there are thousands of people dealing with it at any one time.  This means there are many resources to assist you along this journey.

First, let’s discuss the neurologist that diagnosed you.  They come in all sorts, some helpful and compassionate and some with the bedside manner of a centipede.  The bottom line is that if your neurologist is not a patient advocate, consider firing them and searching elsewhere.  They should be willing to answer any and all questions without you feeling like you are wasting their time.

Second, look to the organizations that have been formed to support ALS patients.  For example, the ALS Association (ALSA) has services, support and research. The Muscular Dystrophy Association (MDA) has an ALS Division, as ALS is one of their 43 neuromuscular diseases that are covered under their umbrella.  Go to their websites, find your local office and get registered with them as soon as possible.  Both organizations sponsor support groups addressing many areas of life with ALS.  Please check out our article, Support Groups – A Safe Haven from our “A New Life with ALS” category of our blogs. Other ALS organizations exist all around the world.  Remember that ALS is also known as Lou Gehrig’s disease and Motor Neuron Disease (MND).

Less than one month after getting diagnosed, Jennifer and I attended a support group with two other ALS patients.  One gentleman had been dealing with ALS for a while and was in a manual wheelchair, while the other woman was diagnosed on the same day I was.  She was married just a year.  It obviously wasn’t a big group yet, but knowing there were other real people out there dealing with this buggar was comforting and we learned a tremendous amount.

Third, check out the site, Patients Like Me.  This site was started to share stories, symptoms, treatments and daily supplement/pharmaceutical regimens of ALS patients.  By having an open forum of patients and their situations, it is hoped that researchers will garnish information useful to their projects.  Register at this site; begin to document your history and form new relationships that will empower you.

Lastly, look for personal websites similar to our ALS Living.  Hopefully, you will find the stories of other ALS patients educational, comforting and familiar.  You are not alone in your journey.  Remember, every journey begins with the first step.

2) “Knowledge is power:”

Sir Francis Beacon wrote this phrase in 1597 and it still holds true today.  It is important to gather knowledge about ALS as early and often as possible.  When we are educated about something it gives us power.  It makes us feel like we can be part of the solution.  It gives us purpose.

After your diagnoses, start writing any and all questions you might have down.  There are no stupid questions.  We had health or progression related questions, financial questions, emotional questions, etc.  Our neurologist was not the most helpful aside from the three-step advice when originally diagnosed.  You see, the doctors don’t have many answers and can’t fix ALS, hence their advice to get your affairs in order.  This actually is good advice as I will discuss in the next section, but it certainly does not empower us!

Know that you have resources available.  I mentioned ALSA and MDA/ALS Division in the section above.  They are great initially because they are gateways to others with ALS.  Delving deeper into their sites and links provides information about research.  I remember doing online research and finding studies that were being conducted by various organizations.  I read these studies with hope and took satisfaction that there really are people working on this horrible disease all the time.

Most research is taking place in universities, however there are some specialty organizations dedicated to ALS research such as the ALS Therapy Development Institute (ALSTDI).  We have a personal link to this organization that goes back to 2004.  After we had completed our time as MDA/ALS Co-Chairpersons we received a call from ALSTDI’s event coordinator, Matt Mandel.  He saw us on the cover of Parade Magazine and thought it would be great for us to keynote his 270-mile Tri-State Trek fundraiser.  We were honored with a private tour of their dedicated ALS research facility in Boston and have approximately 40 full time researchers.  This is unique as most university research facilities have a lead scientist and student researchers that need to be trained every year.

These resources can also help you understand the disease process as well.  The bottom line is the more you know about ALS, what is happening to you physically, the challenges to be faced and what other patients with ALS are doing, you will feel like you have more control over it and that you are involved in the solution

3) Estate Planning:

I had an unexplained seizure about a year before being diagnosed with ALS.  This prompted Jennifer and me to do our estate planning.  The thing that holds most people back from this process is what to do with the children.  Who should you leave them with if something should happen to you and your spouse?  The sobering question is that if you can’t decide, how do you expect the courts to decide?  Did you know that you could always change this choice after the paperwork is done?

We finished our estate plan on December 18th, 2000.  I remember on Valentine’s Day, 2001, Jennifer and I had a great day together and I was very content to the point where I said, “I’m so glad we got our estate planning in place, because for some reason I don’t think I’m going to be around for that long.”  Now this was after I had my seizure and was subconsciously feeling a little vulnerable and frail.  Ironically, one month after this comment I was diagnosed with ALS.  Go figure.  Be careful what you put out into the universe!

“Get your affairs in order.”  What a depressing phrase, yet most initial ALS diagnosing doctors have been taught to recommend this.  The problem is that we all should have this done preferably before anything happens anyway.    What a relief it is to know that if something happens to you, whether it is ALS or the bus going down the street that has your number on it, your loved ones are taken care of.

Estate planning can include, but is not limited to a simple will, guardianship of children under 18, Power of Attorney and Medical Durable Power of Attorney.  There is an advanced directive document called Five Wishes, which can be found here. This is a good start in estate planning, however it is not the only document that should be prepared.

I know it can be difficult to go through the estate planning process because one’s own mortality is not easy to face.  What we need to realize is that we simply do not know when it is our time to go.  There is contentment when plans are in place, for you and also your loved ones.  Don’t wait until these plans are needed to make them.

4) Dealing with Stress:

We all know what stress can do to a healthy body.  What do you think it can do to ALS patients and their caregivers/family?  Handling the previous step is the first line of defense against stress.  It is an incredibly liberating feeling to know your affairs are indeed in order.  It relieves stress for you and your family.

Find out what your work situation is.  For some reason, many ALS patients are tentative in approaching their employers about their diagnoses.   My experience has been that companies are usually very understanding and some actually go out of their way to accommodate the situation.  First stop would be either Human Resources or your boss.  You’re not going to get fired for having ALS!  You will want to find out what your benefits are in regards to accommodations, short and long term disability, life insurance, health insurance, etc. Again, it just helps to know where you stand and work from there.  Why worry about problems that may not exist.

Additionally, it is also a stress reliever not to have to hide your diagnoses.  Keep in mind that when people do find out, they might treat you a little differently; most people are extremely supportive, some distant and unsure, while new friends and supporters will come out of the woodwork.  Ride the wave and don’t judge people’s reactions.  Of course, there are always individual circumstances, but I believe it is good to be honest and open about the situation.

I believe one of the main factors to my slow progression is a lack of stress.  Personally, I went on disability immediately upon diagnoses and have no regrets.  My financial situation allowed for it, barely, but it encouraged me to take advantage of life, family and friends with no work related stress.

Let people help you!  I cannot emphasize this enough.  You cannot save up offers of help.  You must understand that it is actually a gift from you to let people help.  Why, because it allows your friends and family to help battle this disease with you.  It gives them purpose when they are feeling useless.  How do you feel when you help someone in need?  Isn’t it liberating?  Let others feel that and you will have satisfaction as well.

I would be remiss in not advising massage and meditation.  If finances are tight, consider going to massage schools.  Make sure to explain that you have ALS, but these places are very inexpensive.  Meditation can take many forms, whether it is quiet solitude in nature or meditation CD’s.  Find a way to be mindful of everything going on around you.

5) Attitude is Everything:

There is usually the period of shock after diagnoses.  After that you have a choice on how ALS is going to affect you.  The mind is your biggest weapon against ALS.

After getting involved with the MDA in 2001, Jennifer and I had the opportunity to be on the National Jerry Lewis MDA Labor Day Telethon.  We met Jerry on stage and struck a chord with him.  He called us the next week and appointed himself my positive mental mentor.  He called weekly to check up on me for quite a while.  I will cherish those times for the rest of my life.  We still talk about once a year on his birthday, which coincides, with my diagnosis anniversary date.

Obviously, not everyone can have an incredible experience like this, but the point is to find someone who will help you stay positive.  This could be a spouse, friend or life coach for that matter.  Simply having someone to talk to that keeps your attitude pointing the right direction is important.  It is very easy to feel sorry for ourselves, but keep in mind that everyone is dealing with something.  It may not as bad as ALS, but it might even be worse, so no wallowing in self pity.  It is what it is and how you approach ALS mentally will determine your journey.

Surround yourself with positive people.  My brother was absolutely not supportive and I have had very limited interaction with him these last 10 years because of it.  I simply do not have the time or mental cycles to deal with negativity.  We call these type of people “life suckers” and you need to be surrounded with “life enhancers!”

The bottom line is that you get to decide your legacy.  For me, I did not want to be remembered as the crotchety old man that died of ALS, but rather the inspiration that chose to live with ALS.

Please visit http://www.alsliving.com regularly for updated posts, resources and most importantly…perspective.