Why We Walk to Defeat ALS: Team Tammy Hardy

After a six-year journey with ALS riddled with highs and lows, our beloved Tammy lost her life at the age of 39. Yep, 39. You might be thinking, “man, that’s young.” You’re right. It is. Tammy left behind a family and many friends who adored her. For the ninth year, we will once again come together as Team Tammy Hardy in the Walk to Defeat ALS. This is why.

The three voices in this article are those of Tammy’s sisters and her significant other. We share many of the same reasons for walking, including the strong bond we have with each other. ALS didn’t forge that. Tammy did. And it’s a bond that grows stronger each day. Team Tammy Hardy was in place before, during, and after her illness, and we will continue to carry on in her name.

Kelly (Tammy’s Sister)

Tammy was my big sister. She was eleven years older than me, and in many ways, like a second mother – nurturing and fiercely protective. She had the kind of voice you never tired of hearing; a wide smile and laugh that rang like music; and a light in her eyes that I swear must have shown directly from the kindness in her heart. This may sound exaggerated. It’s not. That’s really the kind of person she was – extraordinary. She made you better just by being around her.

Tammy lived her years to the fullest despite ALS. In her own words, “I may have ALS, but ALS does not have me.” But, Tammy was not done living. She didn’t get the chance to be a mother or a grandmother. She didn’t get to meet her nephews. Nor did she get to watch her niece grow. I’m still angry about this, but Tammy never was. She exuded grace and understanding throughout her illness.

Tammy continues to be my role model. I walk because it’s what she would do – not for herself but for every other patient and family. I walk for the thousands of steps she didn’t get to take. For every missed holiday, birthday, and phone call. For all the hugs and kisses she won’t be able to give my son (and there would have been many).

For those suffering from or caring for someone with this wretched disease, I walk. I walk to raise the funds to help you live longer and fuller lives. I walk in hopes that, unlike Tammy, none of your precious moments are stolen.

Keri (Tammy’s Sister)

ALS should be a 4-letter word.  It is still a wonder to me how something many people have never heard of can impact so many lives.  I really cannot imagine a more horrendous disease.  It is the equivalent of being buried alive, drowning, and starving to death simultaneously and all for an extended period of time, even years.

Words cannot even begin to express the admiration I have for my big sister Tammy.  She was happy, healthy, witty, full of spunk and personal style, and an avid runner.  She loved Cardinal baseball, going out to dinner, having cocktails with friends, and travel. She loved to travel.  We made travel plans often; New York, Chicago, Boston, and Las Vegas.  I have actually lost count of the number of trips we made to Vegas, and there was always somewhere we wanted to go.  Before ALS, I had envisioned we’d be senior citizens still traveling together until our bodies just couldn’t any longer.  Never would I have imagined that we’d barely be in our 30s when that happened.  I remember her once saying, “We better plan that trip to New York while I can still walk.” Thankfully, we took that trip, and were even able to squeeze in a few others after that with the help of a walker and a motorized scooter.

I feel one of the most devastating things about ALS is the prognosis: lack of medications and no cure.  It is excruciating to witness someone suffering with ALS. There is little to no hope and loved ones are often left feeling helpless.  All you can do is help them to lead as normal a life as possible. This requires a lot of equipment.  For Tammy, this meant a stair lift, a walker, a scooter, a motorized wheel chair, a ramp van, a lift chair, a remodeled bathroom to accommodate her lack of mobility, a few cleverly invented devices, and round the clock man power.  Unfortunately, not much of this comes easy or cheap.  So for me, this is why I walk.  Of course I hope that the money raised will lead to research and a cure … but also the countless other things that may help someone suffering with ALS to have some sense of “life as it used to be” and maybe, even one more trip to Vegas.

Scott (Tammy’s Significant Other)

Let me tell you a few of the (many) reasons why I walk.

I was pulling into Dutch Bros. coffee (www.dutchbros.com), a lovely little drive-through coffee place that dots the Pacific Northwest, when I noticed the sign. It was a fundraiser, they were donating proceeds of coffee sales, and I was several days too late. But what I noticed first, and mostly, was the fundraising was ALS-themed. The barista explained that one of the founding brothers (of Dutch ancestry, not named Dutch) had lost his battle with ALS some years before. And with that, a flood of memories (perhaps a latte memories) came roaring back.

Tammy was a coffee connoisseur. And every morning, regardless of whatever else was on the agenda, coffee was at the top of her to-do list. As her disease progressed, she rigged a setup that provided her easy access to her coffee. Even though she had to sip it through a straw, no matter. It was coffee. It was good coffee. A little creamer. In her Eeyore insulated cup. Coffee was one of those little pleasures that brought an instant of normalcy to an otherwise quasi-normal existence. If you were there with her in the morning, your first action was to get the lady her coffee. And like Jules says in Pulp Fiction, it was the gourmet, er, stuff.

Wine provided another little moment of ordinary in extraordinary circumstances. And yes, she used a straw for that, too. But it didn’t matter. For her, it was a connection to enjoying life, no matter how the disease had ravaged her body. It was also a common bond for us, something to discuss, something to enjoy together, something that we could share outside of the caregiver/patient idiom. Besides, no way was I ever going to watch American Idol!

There’s a picture of Tammy, with her breathing apparatus all hooked up, holding her niece as an itty bitty baby. You can see the light in Tam’s eyes, the sheer joy, the happiness, that this little creature created. As it turns out, we ended up with the greatest niece and the three greatest nephews in the world. My niece is now old enough to ask questions about her Aunt Tammy. That she won’t know her, or be spoiled rotten by her, is incredibly difficult to bear. Soon, the nephews will be asking those questions.

For me, Tam was my partner, friend, and comic foil. Ultimately, I walk to honor Tammy’s brave struggle, her incredible poise in dealing with ALS, and her resolve to find, and live, normal and ordinary. I walk for others facing the struggle. I walk so that one day, no one will have to face these struggles. And I walk for my family, to honor them, to support them, and to share in and pass along the joyous memories of a life too short but fully lived.

You can support people with ALS and their families and the search for treatments and a cure by joining the Walk to Defeat ALS in Forest Park on Saturday, June 24th. For more information or to register, click here.

Living with ALS in Rural America

In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist).   Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging.    According to The National Rural Health Association here are just a few reasons why:

  • 53% of rural living Americans lack access to 25 Mbps/3 Mbps pf bandwidth; the benchmark for internet speed according to the Federal Communications Commission.
  •  Lack of high speed internet can be a hindrance for ALS patients in accessing information and communicating with other patients, thus heightening a sense of isolation that most generally is associated with an ALS diagnosis.   Limited technology support can also limit choices to use adaptive devices to help communicate or automate one’s home to overcome obstacles created by ALS.
  • Rural America residents have greater transportation difficulties reaching health care providers and are often required to travel great distances to reach a doctor.
  • ALS specialty clinics provide the best care possible for patients, but often, with ALS travel becomes difficult and patients must rely on their primary physician to coordinate in home services and other community referrals.
  • Rural communities often do not have local neurologists who have ever seen an ALS patient.  Patients often have to be referred to higher populated cities to see a neurologist which can bring on additional stressors for the family. Finding the time to take off work to complete the trip, having an accessible vehicle to transport the patient, or even affording the ever rising price of gas to get to the city can be stressful!
  • Often times, when a family receives an ALS diagnosis, they are referred back to their hometowns for therapies and in home care. Due to lack of agencies who are familiar with ALS, it is hard to find someone knowledgeable about the disease and it gets very frustrating to the patient and their family members.

When you chose to live in rural America, it is a lifestyle, not just a location.  Obstacles exist, but become just a part of everyday living. In my experience of working and living in rural Missouri and Illinois, you find that people tend to rely more heavily on each other and their communities.  Time and time again, I have witnessed neighbors (not just those to the immediate left or right) but entire towns or counties who begin ‘showing up and doing’.  They very quickly fill the care team of an ALS patient and provide a huge support that the family so greatly needs.

This world we live in might not be perfect, but when the human spirit prevails and see communities band together, it can make it feel a few steps closer to perfection.

The ALS Association St. Louis Regional Chapter can connect people with ALS and their families with the local resources they need, including equipment loans, grants to help with ALS-related expenses, transportation services, and access to ALS clinics and clinical trials. Visit www.alsa-stl.org to learn more.

Lori Dobbs is a care services coordinator with The ALS Association St. Louis Regional Chapter.  She has nearly twenty years of experience working with ALS families in the Missouri boot heel, southeast Missouri and the southern Illinois region, where she coordinates in-house services and community referrals. Lori joined The Chapter staff in 2010, bringing with her 12 years of service with ALS families.

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!