In It For Life

By Dave Van de Riet

As summertime is upon us, communities all over the country will begin to host the Walk to Defeat ALS.  This annual event brings together thousands of people nationwide to walk in honor of or in memory of someone they love.  But that doesn’t tell the full story as to what this Walk means.

About 15 years ago, I had the pleasure to meet a lady who was attending the Walk by herself.  She explained that her husband had just been diagnosed with ALS and she happened to hear about the Walk on the radio.  Other than her husband, she had no family in town and understandably she was very worried about what was to come.  But as we walked, she talked about being overwhelmed by the sight of the crowd there that day.  She said for the first time since her husband’s diagnosis, she felt that she wasn’t completely alone.

There are so many inspiring stories that are part of each and every Walk.  Seeing the hundreds of teams – most proudly wearing colorful shirts adorned with pictures or designs that say why they are there – is always memorable.  You can hear the stories sometimes punctuated by laughter, sometimes by hugs and tears.  But they are always passionate and meaningful and remind you that we are all in this together. For a disease that can be so isolating, how powerful is that?

Last year, I happened to attend our ALS clinic and was visiting with a husband and wife. The husband had been fighting ALS for some time.  But before their appointment began, they wanted to make sure they turned in money that they had raised for the Walk.  In the midst of their battle, they were still trying to make a difference – still trying to help others all through the Walk.  This is part of the spirit that continually makes the Walk more than just a fundraiser.

The Walks have many teams who are walking in memory of their loved ones.  And, sometimes their loved one lost his or her battle long ago.  But to these teams, that’s not the issue.  The issue remains that people are still suffering.  So, these teams gather their families and friends each and every year and strongly say they need to stay in the fight against this disease and stay in it until there is a cure.

Several years back, I was talking with a man who lost his Mom to ALS over 20 years ago.  He was telling me about her and how he drifted away from the cause in the intervening years.  But he had decided that to honor her, he wanted to join the Walk in Springfield, IL because he had seen some news reports about the event and was inspired to reengage.

As he wiped a tear from his eye, he said he wished he had never left the cause.  We told him that all that matters is that he is here now!

The Walk wouldn’t happen without all of the hard work and planning from the ALS Chapter staff and a dedicated group of volunteers.  These two groups of people know firsthand how special this event is; how important this event is.  For many chapters, the Walks are the single biggest fundraiser and potentially the one time during the course of the year where thousands of people are coming together for this cause.  One year at the conclusion of the event, I asked a committee member if he were planning on returning the next year to work on the Walk.  He stopped what he was doing, looked at me and said something that was simple but meaningful at the same time.  His words were “I’m in it for life”.  How eloquent and inspiring his words were and are! They have become the unofficial motto of the Walk staff, committee and the volunteers who are there long before the Walk begins and stay long after it ends.  “In it for life!”

So many people are part of the Walk – each with his or her own story or their own reason for being there.  Those reasons push them to walk for those who can’t.  But there are also many people who can’t be there the day of the Walk but still participate by being a “virtual walker”.  These “virtual walkers” register to participate, raise funds, encourage the participation of others and provide a vital role in the success of these events.  Recently, there was a couple who was unable to be at the Walk but they still wanted to participate.  They were actually in China on Walk day but they had proudly brought their team shirts with them and made sure to wear them while the event was going on at home.  It may have been the first time there has ever been Walk to Defeat ALS virtual walkers at the Great Wall of China – another example of the dedication that so many have!

Recently, the Chapter hosted its annual Walk Kick-Off party.  This event is meant to start the Walk season and energize new walkers and veteran walkers and share ideas to raise awareness and funds and make the Walk the best it can possibly be.  We are always fortunate to have some PALS in attendance.  Their presence is always inspiring as they are dealing with so much.  Yet, they show up because they too are energized and looking for ways to make their teams and the Walk a success.  How can you not step up your own game when you see such passion?

The night of the Kick-Off, I received a message from a wonderful lady who has ALS.  She wanted to let me know why she couldn’t be there as she was having a medical procedure.  But, she assured me, she would be at the Walk because of how important it is.  I’m not sure she understands how much she inspires those around her and is further evidence that ALS will never define her and so many others.

So, as we approach Walk season this year, think of the differences this event can make – the differences YOU can make by joining with those locally and with those across the country.  If you are a veteran participant, we say “thank you”.  If you are new to the Walk this year, we say “Welcome”! Prepare to be inspired by what you witness and what you feel.   The Walk is such a special and wonderful event and together we will strike out ALS.

The Springfield, IL Walk to Defeat ALS is June 10th at Southwind Park, and the St. Louis Walk will be held on June 24th at Forest Park.  Register today at www.WalktoDefeatALS.org


Dave Van de Riet joined the ALS Association St. Louis Regional Chapter’s Board of Directors in 2006 and became St. Louis Walk Chair the same year.  Since 2012, Dave has also served as the Board Chair of the St. Louis Chapter. Dave’s Dad, Ray Van de Riet Sr, was diagnosed with ALS in 1995 and passed away in July 2000.  The entire Van de Riet Family formed their Walk team – The Globemasters – in 2001 and continue to participate each year in the St. Louis Walk to Defeat ALS.

ALS Caregiving – Preserving Your Relationship with Your Partner

Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it.  It is essential that couples continue to function as partners, and not become only patient and caregiver.

With the physical changes brought on by ALS, comes a shift in the balance of power that is naturally created in all relationships.   As one partner becomes less physically able; the other becomes more physically active to make sure that the household functions, the kids are raised and/or cared for, and provide physical care and emotional support for their loved one.  Without paying attention to our emotions, resentment can easily crop into our lives.

How To Preserve The Relationship?

  1. Maintain equality within the relationship and find ways for both partners to make significant and meaningful contributions. Take advantage of the resources available to you. The power of technology can allow a person with very little controlled muscle movement to become an active member of the family and its day to day operations.
  2. Keep communication open through family meetings and make decisions as a team. Remember, to try and end the ALS journey as you started it, a team fighting together.
  3. Focus on your Relationship: Research indicates that the better you feel about your relationship with the person receiving care, the less stress you will have. Talk with him or her. Get counseling. If there is serious conflict, invite a third person–one you both know and trust–to help mediate. The results can be gratifying: spouses with the highest morale generally attribute it to the continuing companionship and good relationship they have with their partners, which can also help sex lives to stay healthy.
  4. Get help! Take advantage of resources available – especially respite care. This allows caregivers to get away from relentless and potentially overwhelming responsibilities for an hour, a day or several weeks by having skilled care personnel stay in the home, or by having their partner stay in a facility which provides an appropriate level of care.   Most caregivers report that providing personal care for their spouse takes away from the sexual intimacy needed to maintain strong bonds of marriage.
  5. Stay Independent and Avoid Isolation:  Keep in touch with friends, have people over/visit them, going out independently will help decrease isolation and foster independence.  Not many married couples, independent of ALS, spend 24 hours together and do all activities together
  6. Pay attention to each other’s health, both physical and emotional. Honor each other’s need to manage stress, relieve frustration and grieve by taking enough time for themselves.
  7. Manage Stress – Stress can cause physical and emotional exhaustion. Its symptoms include diminishing self-esteem, a negative attitude, a loss of concern for others, a loss of focus on your own life. If let unattended for caregiver’s, it can lead to burnout – It’s real and It happens!
  8. Get Your Finances in Order: Regardless of how little or how much you have, get some help sorting through insurance policies, retirement programs, social security and other government entitlements to find out what there really is to draw on. Keep in mind that specific benefits and programs change from year to year, so re-check periodically. This will help to minimize endless worry about financial strain.
  9. Accept Help: Don’t try to manage ALS all alone.  Taking advantage of the offers of help that come from family and friends, can make time to be set aside as couple time. It is important to continue dating activities, or those activities celebrating your love for each other that were in place prior to ALS.

You may not be able to do anything about ALS being in your life, but you control how it impacts your time, energy, attitude and quality of life.   Finding ways to acknowledge and nurture your personal life will bring new energy and enthusiasm into your life as a partner, patient, friend or caregiver.   Even the strongest individuals, and marriages may need extra concern and help along the path of ALS.

For more information and resources on caregiving, please visit http://www.alsa-stl.org.

Welcome to our blog: ALS Connect

Welcome to The ALS Association St. Louis Regional Chapter’s new blog – ALS Connect.  We’re excited to provide a space to share news, updates and other content with you, while also offering an opportunity for us to learn and interact with our friends in the ALS community.

Here you’ll find stories, resources for caregivers, local event updates, research and advocacy news, as well as details on opportunities to engage with our Chapter and supporters.

We hope that you’ll find this a place where you can express your thoughts and share your perspectives. We look forward to growing with you as we embark on this new journey.  Thanks for stopping by!