ALS claims tireless California ALS Advocate Steve Hall

I met Steve Hall twice during my tenure as the Advocacy and Public Policy Chair for the ALS Association - Greater Bay Area Chapter.  After his retirement from the ACWA in 2007, as the effects of ALS made it difficult to work, Steve became an advocate for legislation on ALS at the state Capitol. His motto became, "As much as I can for as long as I can." Steve held the ear of many influential legislators in Sacramento, testified on behalf of ALS Patients for legislation carried to the State Senate and Assembly, and helped to open important doors for the CA ALS Advocacy team.  He was every bit as gracious and courageous as Bob describes.  

On Thursday, January 28th, a floor session is scheduled in the California Senate.  Senate President pro Tem Darrell Steinberg will speak about Steve’s life, his battle with ALS, and adjourn the California Senate in his memory.  

I too, am saddened that another champion has been lost to ALS and send his family my fondest prayers and wishes as they grieve Steve's passing.  Each of us can hope that our lives are remembered in such a warm and clearly enthusiastic manner!

Greetings:

It is with a heavy heart, that I share with you news I received this evening that Steve Hall passed away this afternoon due to the ravages of ALS (Lou Gehrig's Disease).

Steve was a blessing to me far more than anyone can ever know. He was a competent, loyal and caring boss for nearly 10 years during my tenure at ACWA. He was a wonderful mentor. He was a great friend. He was a brother in Christ. It is the faith I share with Steve upon which I rely upon tonight, comforted in the knowledge that Steve has escaped from his broken earthly body and entered into glory to experience joy and peace eternally with our Lord and Savior, Jesus Christ. I know that Steve's faith carried him through the suffering he knew that lay ahead of him when he was diagnosed with ALS. His spirit was strong; his smile and sense of humor still evident long after he lost the ability to speak. What bravery and courage he displayed for all of those who knew him. I shared my e-mail updates with him during the water conference committee hearings this past fall. He replied one day, taking great glee that nothing much had changed in his absence and admonishing me to keep up the fight.


Steve and I first met when I worked as the senior consultant to the Assembly Water, Parks & Wildlife Committee in the mid-1980s and Steve was head of a San Joaquin Valley farm water coalition forged during the Kesterson Reservoir agricultural drainage (selenium) upheaval in the San Joaquin Valley. Water deliveries were threatened; farming was threatened and entire communities held their collective breath. Steve swung into action in the State Capitol, admitting to being out of his element, but one would never know it. He accompanied then Assembly Member Jim Costa and me to meeting after meeting, hearing after hearing. We took on those interests and powerful legislators who would rather see farming in the west side of the San Joaquin Valley abandoned and won a 3-year reprieve for farm drainage ponds from the Toxic Pits Cleanup Act.

Our paths did not cross again until Steve was named Executive Director at ACWA. I was General Manager of the El Dorado County Water Agency at the time and I was asked to take part in the effort to rejuvenate and reorganize ACWA. The personal characteristics that Steve demonstrated in our earlier work together remained when I worked with him again in our respective new roles. His leadership qualities, his ability to listen, his steadiness, his ability to slow down for his members when necessary were becoming more evident to those who did not know him before he took over the leadership of ACWA. He wasn't perfect mind you and I do not intend for you to reach such a conclusion. Steve would be the first to counter any such contention.

I left the El Dorado County Water Agency in the summer of 1993 and embarked on a 2-year adventure in public finance investment banking. My timing was poor as the bottom of the municipal finance market fell out after a historic run of refinancings made men and women in the industry wealthy. I suffered two layoffs within 13 months of each other. In May 1995, I came up to Steve at the ACWA Spring Conference at Lake Tahoe following a luncheon event. I just wanted to say 'hello' and renew our acquaintance. He greeted me warmly and spent a few minutes getting caught up as staff and members swirled around him beside the head table. He asked me if I ever came through Sacramento and if so, could I stop by to visit. Something told me this was more than Steve being gracious, so I called his assistant Audrey Ryder the following week. He and I met about two weeks later and he shared with me that he was thinking about reorganizing ACWA staff--would I be interested in coming to work at ACWA to lobby for the Association? I told him that I would be interested. He said he had a long way to go in the process, a lot of people to talk to, other candidates to think about, an executive committee and a board of directors to convince--if the reorganization occurred, it could be 6 to 12 months away from happening. Four weeks later, while I was assured by the partners of the regional investment banking firm where I worked that they thought I had a future in public finance, they asked me to stay on without pay--relying solely on commissions for the immediate future. Since I hadn't earned a commission in two years while at two firms, and I had a family and mortgage to take care of, I asked to be laid off. I called Steve from a pay phone in Walnut Creek about an hour later. I asked him if he had thought any more about our conversation. He said that he had and asked why I was calling. I told him about getting laid off. He said he would get to work on bringing me to ACWA. I started working at ACWA in the new position of State Legislative Director on August 1, 1995--six weeks after that telephone call!


There are too many funny, too many interesting political and workplace stories to share here--many intensely personal and private experiences that will remain between Steve and me.

Steve was always very health conscious and very athletic--playing tennis with Jim Costa and others; golfing with Mike Dillon and others; playing basketball (and blowing out an Achilles tendon). Well, even with all of that physical activity, he returned from an annual check-up to share that he had high cholesterol and needed to take better care of himself. He tried mightily to stick to a healthy diet. I can't tell you how many times at ACWA department manager meetings during that time that the managers laughed amongst ourselves as Steve--over the course of an hour or two hour meeting, started out eating just one quarter of a muffin or doughnut, only to go back three times to end up eating the remainder of the muffin or doughnut--I guess it had fewer bad calories that way! Well, this lead to one of the few lighthearted moments that came after Steve was diagnosed with ALS. He was still working at ACWA, but at that time confined largely to the JoyRider to move about. I happened to be visiting on the second floor of ACWA HQ one day when Steve came around the corner toward his office with the largest chocolate-covered raised doughnut on a plate in his lap that I think I have ever seen . I said: "Well, I can see you're not worried about your cholesterol buddy!" We both shared a laugh.


I am blessed to have known Steve Hall; I am a better man for sharing a part of my life with him. Words are wholly inadequate to describe the loss I feel tonight. He deserved much better from life, but had no complaints.

Some of you knew Steve well, some of you were acquaintances and some just knew him by observing his work at ACWA. Please feel free to share this small remembrance with others as I do not have all the e-mail addresses of friends and colleagues here at home. Please keep Steve's family in your thoughts and prayers.

Bob
Reeb Government Relations, LLC
1107 9th Street, Suite 510
Sacramento, California 95814
PH: 916-558-1926
E-mail: robertreeb@comcast.net

Dignity, Self Sufficiency and Safety...PRICELESS!

Earlier this week I posted Why does fundraising for ALS matter...really? I received some feedback that the story got lost in all of the gadget photos. So I decided to separate them. I just adore technology!!!


Dignity, Self Sufficiency and Safety may be priceless, but they DO come at a cost. That's where each and every donor hero comes in! Yep...you are (or can be!) a Donor Hero. And trust me...that too is priceless! Please understand that ANY donation, no matter the size is put to good use by any number of organizations serving patients and families with ALS, such as Augies Quest, ALSTDI, ALS of Michigan, or the ALS Recovery Fund. Bill and I were blessed to be associated with the ALS Association Greater Bay Area Chapter. But there are many others - use GoodSearch or Google to find an organization near you. BTW, GoodSearch is a great way to donate "passively" to the organization of your choice! 

Here are a few of the zillions of ways your donations and fundraising efforts can help a family living with ALS:


A $25 donation allows a patient DIGNITY and SELF SUFFICIENCY.

Built up utensils, straw holder, scoop plate and a grip cup allow an adult to feed themselves

 
A Button/zipper pull and a key turner allow independent dressing and access to the home

A $50 donation purchases SAFETY...Bathroom grab bars and a shower chair retain independence and safety around the toilet and shower. A Gait Belt allows a caregiver to safely transfer a patient from bed to chair and back, protecting their back and retaining safe control of the patient.

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  $1 per day Provides speech amplifiers for those whose voices are now too faint to be heard. or Helps a family transport their loved one to a clinic visit. or Offers an hour of a Chapter Care Manager’s expertise.
  
  
  
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  ALSTDI estimates that it takes $100 to fund 1 minute (60 seconds!) of ALS specific research. Remember we still don’t know what causes ALS which means we cannot begin to find a cure for ALS.
  
  
  
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  A $500 donation allows an ALS specialized Regional Care Manager to do their job for 1 week. Every day, our Care Managers assist patients by recommending community resources for financial/emotional support, securing appointments for power wheelchairs, providing recommendations for in-home care, recommending speech devices, reviewing physical therapy techniques, checking in on a patient who lives independently, delivering educational presentations to a wide variety of audiences, coordinating equipment loans/transfers between patients and vendors, and so much more.
  
  
  
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  $1000 supports specialized care at an ALS certified clinic, where patients see a battery of specifically trained medical professionals – Neurologist, nurse, occupational therapist, respiratory therapist, speech pathologist, physical therapist, social worker, augmentative communication specialist, and physical therapist. Consider that these costs are not always covered by insurance!
  
  
  
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  $2000 supports the MDA's Durable Medical Equipment program - specifically the grants for motorized wheelchairs, enhancing mobility and independence
  
  
  

How have you been supported by an ALS organization?  Please give a shout out to the heros that help make each day a tiny bit better. Thank you in advance for your generosity. Together, we can make a difference. But it WILL take all of us. 

Why does fundraising for ALS matter....really?

For the next ten minutes, I’d like to have you “unplug”, read and absorb the following words. After reading the next few paragraphs, please close your eyes and really paint this picture in your mind. Ready?


You and your family have decided to enjoy a beautiful, sunny day at the local beach. You pack your picnic basket and enjoy the drive. You have laughed watching your children dig a rather large hole in the wet sand. You think to yourself, this was a great idea…it’s so good to get out, enjoy the sun and watch their joyful play!! After much pleading, coaxing and cajoling, you agree to be buried in their sandy pit. Before long, one child has been working at your feet. They are now covered with wet sand and you can’t get away. In the meantime, another child has been dumping buckets of wet sand onto your left arm, and pretty soon, you can wave to your spouse with your right arm and shout out that you are having fun. The children see progress and several other children join in so they can quicken their pace! Pretty soon, your left arm is buried and they are making good progress covering your legs, hips, waist, chest and finally your shoulders. Now…only your head is visible.

You know exactly what is happening, and it is quickly apparent that you are at the full and complete mercy of your children! And, by the way, remember the sand is wet, so it’s heavy on your chest, and you realize that it’s getting a little difficult to breathe. Your stomach growls and you convince the children to bring you some fruit and something to drink. You instinctively reach out to get your snack, only to discover that your hands are useless, you are truly not capable of feeding yourself. Your children laugh and scamper off to chase the waves. You cannot move and you know it.

At some point, you have convinced your children – via pleading or threats of death before their next birthday – to dig you out. It takes a bit, but you are free and the only sign of your ordeal, is that you are covered with sand, which is quickly washed away by a quick dip in the water. You are once again fully functional and independent. For an ALS patient, there is no gleeful option to “dig them out”.

Tomorrow, as you (without assistance) get out of bed, stretch, eat your cereal, take your shower, get dressed, walk to your car, enjoy your Starbucks®, curse your allergies and blow your nose, go about your busy workday, navigate the traffic home, take the dog for a quick walk, enjoy a glass of wine with a juicy steak, hold your children as you read their bedtime story, bend over and pull up the covers to tuck them in, brush/floss your teeth, use the toilet, take your medications, put on your pajamas, climb into bed, read for 10 or 15 minutes, kiss your spouse, reach up and turn out the lights…please think back to the beach scene and consider that EVERY 90 minutes, of every day, ALS claims 2. Someone will get an ALS diagnosis and start the descent into the sand pit of complete dependence on a family of caregivers. And one will die from complications of ALS, usually because they can no longer breathe.
Now…again with the beach scene firmly in your mind and, because you can, I ask that you take the following three steps. Make a difference for the hundreds of families living with ALS who are served by the ALS Association in your community.

1. Put on your tennies or ride your bike for a wheelchair bound patient in one of the Walks/Rides to Defeat ALS to be held around the US this fall. Please click http://web.alsa.org/site/PageServer?pagename=WLK_BP_stateselect to find the most convenient ride/walk and sign up today. While the economy struggles to get back onto its feet, consider that most ALS patients are trying to do the same and need your help – today more than ever. There are a number of examples below which will help you understand the safety, dignity and independence your generosity provides. I recommend a monthly donation of $5, $10, $25, $50, $100 or more (whatever your budget allows).
2. In addition to your personal donation, make a commitment to raise $250. In the advanced stages, care for an ALS patient can reach $250,000 annually. In the early stages of the disease, your donation can buy independence, safety and respite for a patient or their family members.
3. Pass this message along to everyone in your address book. Share it with friends, family, neighbors, co-workers, schoolmates, teachers, and local business owners….everyone within your sphere of influence and ask them to join you on the walk and to make the fundraising commitment.

Thank you!

Support Group - Strength and Knowledge in numbers

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone....there are others on this same journey.


I am always impressed by our group leader Eileen Nevitt's ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC's of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter's YouTube channel.


Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.


Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:

• NO smoking!
• Early detection and treatment of everyday illness - don't let a "little cold" grow up!
• flu/pneumonia vaccines
• avoid infection - steer clear of favorite germy hotspots like crowds, public transportation, doctor's offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
• Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).


Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is "normal" for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

• Excessive daytime fatigue
• Trouble thinking or concentrating
• Morning headaches
• Not feeling refreshed in the morning
• Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
  

Follow-up
Once you and your physician have agreed on a solution, COMPLIANCE is critical. And...it will probably take some time to get used to the new routine. Margie shared some helpful tips.

• Choose an interface (mask/nasal apparatus) you think you can live with - there are many to choose from. Some vendors offer special 30 day trial programs.
• Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn't leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is "just right" for you.
• If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
• Be persistent and keep trying. It may take a couple of tries to find the right solution.
• Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
• Enjoy the benefits of better breathing!
  
  Each of us received a copy of "ALS Respiratory Decisions" A Guide for Persons with ALS and their families, produced and distributed by the Jim "Catfish" Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

Advocacy Toolkit

In a previous post, I presented an overview of the tools available on the Public Policy Page of the National ALSA website. This post is designed to make you more familiar with the options on the Elected Officials tab. Practice using the tools by sending a thank you letter to your State Legislators for their work to pass the CA State Income Tax Check-off and ALS Registry bills this year! Just give a brief overview of your story and why the passage of these bills is important to you. Helpful hint: It’s easy to compose a letter in your normal word processing program (i.e. Microsoft WORD) and then use the Copy/Paste function to add the text to the online/web form.

Step by Step

Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home

Click the Elected Officials tab.

Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.

Click the name link and the system will present an overview of the selected legislator with links to their official web page.

Click the View button located next to the Issues & Legislation section and the system will display a number of options, including a link to tips & protocol when writing to legislators.

Alternatively, you can also use the tools provided by the State of California to locate your local legislator. Click the link: http://www.leginfo.ca.gov/cgi-bin/memberinfo

Enter your zip +4 in the search box and click search. The system will provide a list of your State representatives.

Click the name link to be taken to the official web page for each legislator.

Click the Contact Me link.

Complete the information requested.

Click Submit.

Be informed – subscribe to e-news from your legislator. Learn about town hall meetings, new legislation, community events and more. Visit their website and sign up today.

NEW…VA Benefits Online Resource

Newly launched, ALSA National has created a new section on their website, targeted specifically to our military veterans and their surviving spouses. Designed to help veterans understand and apply for the benefits they are entitled to, the site includes important resources for vets with ALS, their families and survivors, such as answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Please share this information and encourage all vets to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS.

--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357

You’ve signed up to be an advocate…now what?!

You went to the Public Policy Advocacy Action Center –http://capwiz.com/alsa/home/ and registered with ALSA National to become an ALS Advocate. THANK YOU! You have taken the first step to making a difference for patients and families living with ALS. The next step is to get familiar with the Public Policy Page and some of the great tools available to us on the ALSA.org website. Here is a quick overview of the page – I’ll cover individual tools in future posts.

There is much more content, but this is the “meat” of the home page.

The Elected Officials tab allow you to find your elected officials, including members of Congress, governors, state legislators, local officials, and more. Enter your Zip +4 Code, select your search criteria and click GO.

The Issues & Legislation tab allows you to learn about key legislative priorities and send email messages to your legislators.

The Media Guide tab provides a comprehensive listing of the newspapers, TV stations, and other media organizations which cover your zip code.

The resulting media list allows you to send an email message directly to the key contact at up to 5 media organizations. This is just a partial listing for the 94547 (my hometown) zip code!

I’ve found the site to be very user friendly. So…logon and take a look around!

ADVOCACY 101

What is an advocate? (Webster’s) One that supports or promotes the interests of another

What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.

Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:

• Presumptive Disability (and accompanying benefits) for Veterans
• Passage of the ALS Registry Bill
• Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
• Increased federal funding for ALS research at the NIH
• Federal funding for ALS research through the Department of Defense
  

Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!

As an advocate, what do you do?
ADVOC[ATE*]

• Join in (or start !) a social networking discussion
• Join the “Advocates for ALS” group on Facebook
• Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
• Become a Greater Bay Area Chapter Facebook FAN
• Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
• Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
• Sign up: http://www.linkedin.com/groups?gid=1723587
• Join the ALSA advocacy team.
• Sign up at http://capwiz.com/alsa/mlm/signup/

PARTICIP[ATE*]

• Sign up, lace up your sneakers and walk in a Walk to Defeat ALS.
  -Find a walk:

http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!

Sign up, don your padded shorts and ride your bike to Defeat ALS.
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.

Sign up and volunteer for one of the many chapter events/projects.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

EDUC[ATE*]

• Learn the answers to FAQs
  -Wikipedia:

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
-ALSA: http://www.alsa.org/als/what.cfm?CFID=3127178&CFTOKEN=6299aa0f7dad5592-E96C37F7-188B-2E62-80C54B5B86E267D5
-Whatisals.com: http://www.whatisals.com/

Speak up and speak out.
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!

POPUL[ATE*]

• Update your social networking sites (i.e. Facebook, LinkedIn, Twitter) on a regular basis.
  -Share links to research, interviews, stories, events, clinical trials
  -Post encouraging messages
• Promote local events to raise ALS awareness by participating and sending event invites to your friends.

[*ATE] – ALS…Together it Ends

Join an ALSA sponsored Support Group

I'm a huge fan of the ALSA support groups! They are a lifeline, when you receive an ALS diagnosis and think you are about to snap off the earth. That lifeline extends throughout the progression of the disease and then supports the grieving process.

Each group is slightly different, but the basics are the same. Each regional group meets periodically (usually once a month) and is facilitated by a volunteer, generally a licensed social worker. Patients, surviving spouses/partners, caregivers, family members and friends share their journey with ALS. It's a safe place to ask all of the "dumb" questions, find out about current research and clinical trials, share the more pragmatic aspects of dealing with the disease, learn from various experts (communication devices, construction, how to give/receive a sponge bath, etc.) and so much more. For me...it was (and still is) a place to feel normal and with patients in various stages of the disease and different progression, it's much easier to get a feel for the bigger picture.

To find a support group near you, check the National ALSA website.