ALS Support Group of NW WI
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, 3:00pm – 5:00pm At Chippewa Valley Bible Church in Chippewa Falls
Support Group Meeting Notes:
There was no June Support Group, due to the walk, held June 10th. Approximately
470 people attended. Micheal Perry, author, singer/songwriter was present and enjoyed
by all! The sun was shining and the picnic served, and group photos were again taken
by Dennis Strunc. Walkers were met by our duo trumpet players. THANKS TO ALL
WHO MADE THIS DAY SUCH A GREAT SUCCESS!!
If you were not able to attend and still wish to donate, you may do so by making a taxdeductible donation today to ALS Support Group of NW WI, c/o Jennifer Lindstrom,
CPA, 3703 Oakwood Hills Parkway, Eau Claire, WI 54702-0690.
Events:
ALS Support Group will be meeting Thursday, July 12,
3:00 – 5:00pm at the Chippewa Valley Bible Church
Misc. articles provided by ALS Association Connections Newsletter.
Time for Some Mood Music
By Barbara Bronson Gray, RN, MN
Need some cheering up? A little motivation? A change in outlook?
It turns out that listening to the right music may just do the trick. There’s a wide range of
research that has shown that music can have a dramatic, positive effect not just on your
mood, but on anxiety, depression and your ability to sleep.
Neuro-scientists and psychologists say it doesn’t matter whether it’s classical, country,
rock, jazz, oldies, new-age or the simple repetition of ocean waves, as long as the music
fits your mood and your taste.
Researchers at Penn State University studied college students’ response to music as
reported in their listening diaries. The research, published in Psychology and Education,
showed the students had more positive emotions after listening to music. It didn’t matter
if they listened while driving or during another activity, or if the music was playing while
they socialized with friends. After listening, the students were more friendly, relaxed,
calm, optimistic and joyful; they also were less pessimistic and sad.
A new book, Your Playlist Can Change Your Life, by Joseph Cardiollo, Don Durousseau
and Galina Mindlin, suggests we should choose our music carefully, selecting music to
either mirror our moods or change them, depending on what we’re feeling. They say the
speed of a song is a critical feature, as is the emotional connection you have with the
music. Pairing the music to your mind-set is helpful. A mis-match can put you out of
sorts, or make you feel anxious, the authors say.
You also should carefully choose how you listen to music. Do you like sitting
quietly by yourself, perhaps with ear phones or ear buds plugged into your iPod? Or
do you prefer to hear the music fill the entire room through speakers, allowing you to
share the moment with others or just appreciate the depth of the sound?
For those with mobility challenges, having a variety of favorite playlists queued up and
ready to roll can make it simple to select songs based on your mood at the time. MP3
devices, iPods, iPads, laptops and computers can all make it easier to make selections
while you’re comfortably seated or lying down. The iPad has a few features designed for
users with impaired physical and motor skills, including a large multi-touch display that
requires no physical force and a built-in zoom function to magnify the entire screen,
making it easier to touch smaller links, buttons and images.
Research Update
The ALS Association Announces New Research Grants
The ALS Association’s TREAT ALS (Translational Research Advancing Therapies for
ALS) Portfolio is a research endeavor enabling important global research to progress
from the laboratory to the bedside. The focus of the program is to support novel ideas,
build tools, partner with academia and industry to identify new potential therapies, and
support the infrastructure for clinical trials with the goal to find meaningful treatments
and a cure for ALS. The Association is pleased to announce seven new grants. These
grants focus on understanding disease mechanisms, the development of induced
pluripotent stem cell lines as model systems to test compounds, the development of
mouse models, and approaches to treating the disease linked to the recently identified
mutation C9orf72. http://www.alsa.org/news/the-als-association-announces.html
Ask the Doc: by Edward Kasarskis, M.D., Ph.D
Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of
Kentucky Neuroscience Center in Lexington, Kentucky, professor in the Department of Neurology at
the University of Kentucky, and Chief of Neurology at the VA Medical Center in
Lexington KY.
Q: With spring here, I’m starting to feel the onslaught of hay fever and I find I’m coughing, sneezing,
groggy and fatigued, and my eyes are itchy and watery and my nose is running. It’s hard to deal with
these symptoms on top of the challenges of ALS itself. What do you suggest?
A: When you hear people complain about their hay fever, they often say, “I’m so stuffed up,” or “I have
trouble breathing.” For people with ALS, it’s more than simply an inconvenience. If you’re already
having trouble coughing up secretions and swallowing effectively, hay fever or upper respiratory
allergies can make you miserable indeed.
To make matters worse, experts are saying that the mild winter temperatures in many parts of the
country have caused an earlier-than-usual release of tree pollen, a common trigger for hay fever. And
allergists predict a longer and more intense allergy season than we usually have.
ALS complicates hay fever. Depending on your situation, you may have trouble taking in the air
necessary to sneeze effectively. Allergies stimulate the creation of secretions, and decreased
respiratory capacity can make it difficult to cough deeply enough to clear your lungs and throat. On top
of that, some allergy medications can cause drowsiness, which can complicate your breathing when
you lie down.
There are some things you can do to feel better:

The more you can reduce your exposure to allergens causing your hay fever the better you’ll
feel. Keeping your windows closed, having a special filter on your heating and cooling system and
minimizing the indoor dust and pollen count by vacuuming thoroughly regularly with an allergyprevention filter may help.

Keep hydrated to help thin your secretions; they’ll be easier to cough up. Use nasal sprays to
moisten your mucous membranes in your nose (although sniffing the sprays depends on your
ability to take in a deep breath).

Talk to your general practitioner or internist about what medications they recommend. Some
over-the-counter medications, such as Claritin® (loratidine) treat runny nose, itchy, watery eyes,
sneezing, and itching of the nose and throat. Non-drowsy formulas are available and you typically
take one 10 mg tablet. Eye drops and nasal sprays are also available.

Ask your pharmacist to check to be sure any over-the-counter or prescription drugs you may
start taking for hay fever and upper respiratory allergies won’t interact with the medications you’re
already on.

Allergy shots may be an option for you but they typically take several
months to be effective. Your doctor may recommend you see an allergist, if
necessary.

If you use BiPap, be sure you’re getting humidified air. (Some thirdparty payers are reluctant to cover the extra cost). The extra moisture will
help prevent your nose, mouth and throat from drying out and will make it
easier for you to deal with the additional secretions the allergy causes

Talk with your ALS neurologist and clinic team members about the
benefits of using a cough- assist device. It’s a noninvasive therapy that safely removes secretions
in people who can’t cough effectively (peak cough flow less than 270 l/m). A cough-assist device
clears secretions gradually by applying a positive pressure to the airway, then rapidly shifting to
negative pressure, which produces a high expiratory flow, much like a natural cough. It’s easy to
use and a good alternative to suctioning; and it can be used with a face mask, mouthpiece or an
adapter to a person’s tracheotomy tube. It is not just for the allergy sufferer with ALS, but helpful
for many ALS patients at a certain stage of their illness
Please let us know if you no longer desire to receive a copy of the ALS Monthly Report
as we will gladly remove your name from the list. Thank you.
Take good care.
Julie Chamberlain, LPN
ALSNWWI Patient Services Outreach
715.271.7257
alsnwwi@gmailcom
www.alsnwwi.org