ALSNWWI Support Group

A Gathering of Individuals Touched by ALS

Share Joy, Sorrow, Laughter, Tears, and Hope.

Receiving a diagnosis of ALS is challenging and can be very overwhelming.

The ALS support group provides a safe place where patients, families, friends, and caregivers

Gather to share information, support, and resources with others who understand.

Second Thursday of each month, 1:00pm – 3:00pm

At Chippewa Valley Bible Church, 531 E. South Ave. Chippewa Falls, WI 54729

PLEASE JOIN US ON THURSDAY, 3/13/14, FOR THE NEXT SUPPORT GROUP MEETING!

February 2014

12 participants were present for special guest speaker: Dr.Curtis Black,McMahon Chiropractic & Physical Therapy in Eau Claire.Dr. Black graciously shared the importance of chiropractic care. He did discuss CoQ10 being a supplement used to slow progression of MS and myasthenia gravis.He recently read that ALS may be in this category as well.Thank you Dr. Black for taking the time to be a part of our group this month. Your expertise and willingness to share is greatly appreciated by all! And thank you Joel for this referral!

The group expressed an interest in having a speech therapist present at an upcoming meeting.Julie has contacted Michelle Knutson, SLP, Mayo Clinic, in hopes she may be available in April or May to give a short presentation and willing to field questions on shortness of breath whencommunicating and other issues related to swallowing.

Familial ALS and its impact on one family and the multiple losses they’ve endured were shared.

A special birthday was celebrated at the meeting with our ALS family. Discussions about celebrating life and every important occasions and the importance of celebrating it together!An invitation for all participants to share those special dates: birthdays; anniversaries; etc., is encouraged so we may acknowledge and share these times together.

Misc. walk discussions; Sunday, June 8, 2014 at the Northern Wisconsin State Fairgrounds, Chippewa Falls WI:11:00 Onsite registration or Online at Free picnic; 1:15 Walk starts.Please note the new location. A few families have been busy in soliciting donations and walkers. So appreciate your time and efforts as we know as caregivers your plates are already very full! Thank you BIG!!

Bi-Paps and Bidets were discussed and more information will be provided at our next meeting.

“To share our burdens is to lighten our loads!” Phone numbers were shared and connections made! Thanks to all who ventured out in the cold to be present for one another!

If you have any questions, concerns, or input, please contact Julie Chamberlain 715.271.7257 or alsnwwi@gmailcom

Take good care and stay warm!

Deb Erickson, LPN

ALSNWWI Outreach Support Assistant

Rita and her creative energy produced this wonderful organized space for her loved one’s ALS related supplies. Organization helps alleviate stress and chaos! Thank you, Rita! 

Misc. articles provided by ALS Association Connections Newsletter:

Research

Two New Awards Will Help Develop New Therapies for ALS

Discovery of Immune Cell's Molecular Signature Likely to Speed Therapy Development for People Living with ALS

Ask the Doc: by Edward Kasarskis, M.D., Ph.D

Is this ALS? Seeking a Diagnosis When Symptoms First Appear.

Q: I have a few symptoms that make me worry that I might have ALS. I’ve heard it sometimes takes a long time to know for sure if you have the disease. I think it’s time to see a doctor. Should I go to my general practitioner? And what tests are needed to make the diagnosis?

A: You’re asking very important questions. And you’re right; it takes on average about nine to 12 months for someone to be diagnosed with ALS, from the time they first began to notice symptoms. Getting the proper evaluation in a timely way is important, especially since we have a drug, Rilutek, which has been shown to help delay the progression of ALS. Should you have ALS, the sooner you start on the medication, the better.

Why does it take so long to get a diagnosis? Unfortunately, there is no blood test for ALS. Scientists are working hard to develop such a tool because it would not only speed up diagnosis, but also it might help physicians monitor the course of the disease and evaluate the value of potential treatments. But we’re not there yet.

As I have mentioned before, ALS does not start abruptly. Consider Lou Gehrig. At first he never dreamed he had a disease. That’s the same problem all of our patients face. They have some age-related bang-ups and other health issues, including everything from arthritis to diabetes. If they twist their ankle or stumble a little when they’re taking out the garbage, they think nothing of it. It has to register in their mind that what they’re experiencing is something new that isn’t going away and needs medical evaluation.

Such was the case with Gehrig. Early in his disease, he thought he was just getting older and was out of shape. But because he was such a great athlete, his usual .343 batting average only slipped to .295 in 1938, which was still terrific but not anything like he had been doing. During that year, his performance was slowly but consistently falling off. He had no clue in 1938 that a dreadful illness was unfolding and did not seek medical attention until the following year.

In my experience, patients who have "bulbar-onset" disease generally come to medical attention sooner than do others. Because their speech is typically affected, others will most likely notice their problem and say something about it. Perhaps an adult child from out of town will call her parent and think her mother has had a stroke or is drinking because her speech is slurred. Or someone who sings in church notices his voice is not the same. These patients will likely go to an ear-nose-throat (ENT) specialist right away, and he or she may be able to realize the problem is something neurological.

But start with your general practitioner. Since ALS is uncommon, the process usually takes a long time and may involve many health care professionals until the correct diagnosis is established. For example, depending on the nature of your symptoms, you will most likely be referred to a physical therapist, a rheumatologist (who specialized in arthritis), or even a neurosurgeon. If your physician thinks the issue may be neurological, you'll eventually be referred to a neurologist, who is a specialist in neuromuscular diseases and problems of the nervous system.

The neurologist will first want to rule out other diseases that can cause serious weakness, such as myasthenia gravis or Guillain-Barre Syndrome. You’ll be given a thorough physical exam and will be asked about your personal and family medical history. You’ll probably have an EMG and nerve conduction study to help pinpoint the site of the problem (muscle, nerve, or the motor nerve cells in the spinal cord). You will most likely have an MRI or CT scan of the spinal cord or brain, checking to see if a back disk or compressed nerve root may be causing your symptoms. Sometimes the neurologist will want a muscle biopsy, an outpatient procedure, to better understand what is happening.

Should you end up with a diagnosis of ALS, I recommend you get a second opinion from another neurologist, preferably a person who specializes in ALS. As you can appreciate, the disease can be challenging to diagnose, and so it’s important that you be certain that the problem has been clearly defined. Just last week I had a woman in the clinic who was concerned that she might have ALS. But as it turned out, she had an unusual problem of a disk in her thoracic spine (mid-back) that compressed her spinal cord and caused weakness in her legs.

If you have sought care at a large medical center, your case may be discussed and evaluated by a team of different specialists. You can also send your medical record, test results and images electronically or by disk to another neurologist for review.

You can see why the process can end up taking months. It can take weeks to schedule an appointment with each physician, and then it takes time to do the tests, get the results and plot the next step.

Whenever ALS is a consideration, the anxiety levels are high because of the seriousness of the disease. I encourage you to seek medical attention so you can get the care you need as soon as possible. And I wish you all the best!