I was able to attend another ALS/MND support group in Illinois on January 17th! I attend support groups to learn about the struggles people with ALS (pALS) face so that I can help develop solutions.
We touched on quite a few topics during this support group. A pALS mentioned how she came to be diagnosed with ALS. At one point, her doctors thought she was suffering from myasthenia gravis (autoimmune neuromuscular disease caused by defect in transmission of nerve impulses to muscles). ALS can sometimes be misdiagnosed as myasthenia gravis or multiple sclerosis (disease in which the immune system attacks the myelin that covers the nerves). This can cause an official ALS/MND diagnosis to take a very long time! An important message the support group facilitator (an ALSA Chicago Chapter care services coordinator) stressed early on in the meeting was that multidisciplinary teams at ALS clinics can be very beneficial for pALS and their families. Multidisciplinary teams are composed of members from different healthcare professions that tailor to a patient’s needs and work as an integrated unit.. The ultimate purpose of multidisciplinary teams is to make a one stop go for patients – they can avoid the stress and exhaustion of multiple visits to various doctors. In Illinois, there are ALS clinics located at the University of Illinois at Chicago, the University of Chicago, Northwestern University and Rush University.In addition to multidisciplinary teams, assistive devices can be helpful to pALS. A motorized wheelchair is one assistive device that aids in daily living. A motorized wheelchair helps a person move around after they lose the use of their legs. Most individuals use their hands or fingers to maneuver the chair, but some can no longer move their arms at all. A man at the support group uses his chin to use his motorized wheelchair! Isn’t that so cool? I have only seen people use their hands to move their wheelchair. Watching this pALS demonstrate how he uses his chin reminded of the time when Dr. McLaren was maneuver his own wheelchair at the Rehabilitation Institute of Chicago in early 2012. He was still learning; he almost ran me over by accident!
It was not a surprise to hear the new drug, GM6, pop up early on in the conversation. For those who are unaware, Genervon has come out with a drug candidate called GM6. Since it is not yet approved by the Food and Drug Administration (FDA), the support group facilitator said it cannot be promoted by the ALS Association (ALSA). The ALSA has encouraged Genervon to apply for funding through their phase II clinical trial program. As the drug advances in the development process, the ALSA will learn more about future steps and the role the organization will play. A drug that is approved by the FDA is called Rilutek (generic: Riluzole). There is a possibility Rilutek may prolong life by a few months; it does not completely stop the disease in its tracks. Some pALS say it does help them feel better, while others admit they feel exhausted after taking the medication. Rilutek is safe, but extremely expensive. A caregiver at the support group stated that it cost her nearly a thousand dollars for a month’s supply of Rilutek! If a family does not have insurance or other coverage, they could be spending quite a bit of money.
Veteran support group attendees contributed valuable information to the discussion, but I also enjoyed hearing input from new support group attendees. A new pALS said that he believes he will be the first person in history that God will cure of ALS/MND. Even if he is not cured, he will still look forward to spending time with God. I think this fighter has an incredibly positive attitude about facing this disease. He does not want to look up information about ALS/MND and worry himself more – he leaves others to do that! His outlook on life will be extremely beneficial for him; the disease can sometimes progress faster with added stress. This man’s attitude had a profound impact on me during the support group. I struggle at times to stay positive during ALS/MND support groups because the material can be depressing. After hearing him speak, I decided to focus on the parts I could control, i.e., improving assistive devices to aid with daily living, instead of things I could not control. Anytime my mind wandered, I repeatedly told myself, There is so much you can do to fight this disease. Do not let the things you have no power over bother you. This calmed my mind and allowed me to enjoy the positive moments of the meeting. I hope to continue this mental exercise during future support groups!
I am very thankful for opportunities like this where I can meet pALS and their caregivers. I truly enjoyed interacting with new pALS and being reunited with old friends. I am looking forward to seeing everyone at my next support group. If anyone has any tips for maintaining a positive attitude, please let me know!