What is ALS?

ALS stands for Amyotrophic Lateral Sclerosis. Like many medical terms, it comes from Greek words:
"A" = without
"Myo" = muscle
"Trophic" = nourishment
"Lateral" = side (of the spinal cord)
"Sclerosis" = hardening or scarring

Exerpted from the ALS Association and NIH websites

Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that attacks nerve cells in the brain and the spinal cord. The disease belongs to a group of disorders known as motor neuron diseases, which are characterized by the gradual degeneration and death of motor neurons.

When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. Yet, through it all, for the vast majority of people, their minds remain unaffected.

Read more about What Is ALS? and review Facts You Should Know About ALS on the ALS Association website.

The National Institute of Health provides a great deal of information on ALS and current research.

Doctors

Scott is seeing Dr. Gareth Parry at the University of Minnesota Department of Neurology ALS Clinic. The clinic also sponsors a support group for patients, family members, and friends.

Below is an early history of Scott's diagnosis, treatments, and clinic visits:

Diagnosis Scott began noticing light twitching (fasiculations) under the skin of his left arm in November 2003. By July 2004 this twitching had spread to his other limbs, chest, and abdomen and become more pronnounced. Upon evaluation by a neurologist in early September 2004, mild weakness in his left had was noted. The diagnosis of ALS was confirmed by Dr. Parry on Sept 30, 2004 after a number of tests (blood tests, EMG, MRI, spinal tap) to rule out other potential causes of the twitching and weakness. Treatments There is no cure or treatment for ALS; much of the management of ALS involves managing the symptoms and attempting to delay the progress. Currently Scott is taking the following medications and supplements which are believed to slow the progression of ALS in some patients: Rilutek (Riluzole) is an antiglutamate drug which appears to prolong the life of persons with ALS by at least a few months and more recent studies suggest Rilutek slows the progress of ALS, allowing the patient more time in the higher functioning states. Very high doses of Vitamin E, Vitamin C, and Beta-carotene taken for anti-oxidant purposes. Creatine is an amino acid made in the body by the liver and kidneys, and is derived from the diet through meat and animal products. A 1999 MDA-funded study demonstrated that creatine was twice as effective as the prescription drug riluzole in extending the lives of mice with ALS. A 1999 study by Canadian researchers found that creatine can cause modest increases in strength in people with a variety of neuromuscular disorders. We are also interested in the possibility of using stem cells from our baby's umbilical cord blood as a treatment option. Although this type of treatment is not fully available in the US for ALS patients, we are hopeful that research on stem cell treatments will progress quickly and successfully in the short term. Early Clinic Visits & Advocacy Updates April 13, 2006 Scott's breathing was steady at 111%, and there is no sign of bulbar (throat/breathing/mouth) progression so that's great news. Dr. Parry recommended Scott start using a cane. It would be used mostly for balance, to create a wider base and prevent falling. Since Scott doesn't have a lot of arm strength, he couldn't use a cane to get up from a fall, but it would help prevent a fall and assist with his balance. Kirsten also thinks it will be a sign to others to be more careful around Scott and hold doors, slow down, etc., rather than assuming he is as young and healthy as he looks. We are also going to start thinking about buying and figuring out how to pay for a power wheelchair. They run around $45,000 and insurance only covers a portion of that cost. MDA provides a one time $2000 grant. There's a lot of paperwork involved so we need to get started on that soon. If anyone is good at paperwork, insurance claims, and/or medical devices, we'd welcome your help and advice! February 5, 2006 Scott was featured in an article in the Pioneer Press on Sunday, February 5, thanks to Sandy Sokolik, who is raising money on behalf of the Scott Stafne ALS Research Fund at ALS TDF. December 8, 2005 At today's ALS clinic appointment, Dr. Parry recommended Scott be fitted with an Ankle Foot Orthotic (AFO) to help control the drop foot on his left leg. The AFO will help hold Scott's foot and ankle at 90 degrees. This means he won't be dragging his foot and expending extra energy hauling his weak foot forward by lifting his hip. As you know, fatigue is a huge concern so we are hopeful this will help minimize his fatigue as well as prevent falls. August 18, 2005 Scott had another ALS clinic appointment today. In preparation for this rainy day appointment, we asked a number of friends and family members to pray specifically for Scott this morning. We are so relieved that the breathing problems and fatigue he has been experiencing are not caused by faster progression of ALS! His breathing test at the clinic appointment today was steady at 113% so that's great news (somehow a 1% improvement over last time)! Dr. Parry and Scott have laid out a plan to get to the bottom of the breathing and fatigue issues and the next step is for Scott to attend a sleep clinic to check his breathing at night. Dr. Parry reassured us that Scott's progression would not suddenly speed up as ALS tends to progress steadily, and since so far Scott's progression has been slow we can expect that slow progression to continue. Thank you for all your prayers! In response to all the interest in praying for Scott, we have set up a Google group mailing list for specific prayer requests. You will only receive email from Kirsten with specific prayer requests for Scott as needed. Please use the box to the right to subscribe to this group or ask others to join. July 29, 2005 Save the date! We will be hosting a golf tournament in September and a "rock" for the cure event in October. Thanks to our friends Tom Gabrick and Sarah Henry for their initiative in getting these events off the ground! Please email us if you are interested in helping to plan or volunteer at these events. More information coming soon! June 1, 2005 We are featured in the June 2005 newsletter for ALS TDF. An excerpt from Scott's blog is on page 12 of the newsletter, along with a family photo. May 19, 2005 Another clinic appointment for Scott. Even though Scott didn't need to see all the specialists for ALS advice, they all stopped in to see Eva! Scott's breathing is still at 112% which is good news. March 11, 2005 We have finalized our arrangements for cord blood banking with Lifebank USA. Lifebank was able to provide cord blood banking for our baby at no cost given Scott's diagnosis with ALS. Thanks very much to Jamie Heywood at ALS TDF for helping us connect with the team at Lifebank. We had also been in communication with Cord Blood Registry. CBR has recently added ALS as a qualified diagnosis for their designated transplant program, which also provides cord blood banking at no cost. Cord blood may be used to treat ALS and other neurological diseases in the near future. We are hopeful that science will discover solid treatment options using cord blood stem cells for ALS very soon. February 3, 2005 Scott had his regular ALS clinic appointment today. We met with Dr. Parry and a number of other doctors and specialists during the 2 hour appointment. Scott will continue to go back every 3 months to monitor his progression and be evaluated for any support (e.g., assistive devices, financial planning, occupational therapy) he needs as the disease progresses. Scott's breathing is steady at an "above normal" 112% so that's good news today. January 8, 2005 Scott has started writing an online weblog to share his thoughts about ALS. January 5, 2005 A screening consortium has revealed a previously unknown property of an existing drug to prolong survival in animal models of ALS. Read more in the News & Research section below. January 1, 2005 Thank you so much for your generosity. With your help we have EXCEEDED our goal and raised over $10,800 for ALS research in the past two months! We continue to be blessed and impressed with your donations and the hope you've given us for progress in ALS research in the short term. Thank you, thank you, thank you. November 21, 2004 Scott Stafne ALS Research Fund Kick-off and Online Holiday Fund Drive To support ALS-TDF, we are kicking off the Scott Stafne ALS Research Fund with an Online Holiday Fund Drive. Please consider donating to ALS-TDF as a holiday gift this year -- as a gift for friends, together as a family, or in conjunction with your church or workplace. You can support ALS-TDF online through our website to help us reach our goal of raising a total of $10,000 by December 31, 2004. Please Donate Now! to support ALS research. November 8, 2004 We attended the ALS TDF - ALS 101 seminar in Chicago, presented by Jamie Heywood, and it was excellent. I highly recommend you attend one of these sessions if you are interested in learning more about ALS, the disease, current research, and how to make informed treatment decisions. We met so many interesting people and learned about a number of resources available to us. We were extremely impressed with the ALS TDF organization and research methods and hope to become more involved with that organization soon. November 4, 2004 Scott had an appointment at the UMN ALS Clinic today with Dr. Parry, and met with the support staff and other doctors at the clinic. It was great to be introduced to so many specialists and knowledgable people who could answer our questions about non-medical concerns related to ALS like nutrition, HR/work questions, legal issues, wills, and insurance. We also found out that MDA covers a portion of Scott's out of pocket expenses--copays and assistive devices--without any request from us! They just do it--we didn't have to pay the copay today, for example, because it was just covered. It's great to know we are in such a supportive community of doctors and experienced people who can help us navigate this disease on every front.