July 2010
The ALS Association, Michigan Chapter
Patient Services News Special points of interest: New Educational Conferences Scheduled! How to get involved with the Walk to Defeat ALS Volunteers needed for Physical Therapist training Reflections from a Gears & Beers rider
Volume 1, Issue 4
Celebrate the 4th of July—Remember our Veterans with ALS
Inside this issue: Get Involved with the Walk
2
Volunteers Needed!
3
Reflections from Gears & Beers
4
Meet our Patient Services Committee
6
Respiratory Conference
6
Calendar of Events
7
While you’re watching the fireworks this 4th of July, please take a moment to think of our veterans with ALS. PALS are often surprised to find out that the Veterans Administration classifies ALS as a service related disease and that veterans who actively served are eligible for veteran’s benefits. While it is unknown why veterans are at increased risk of developing ALS , The ALS Association is advocating on a national level to ensure that the Department of Defense continues to conduct cutting edge research to find treatments and a
cure. The recognition of ALS as a service related disease was a tremendous stride, allowing many veterans disability benefits that were so desperately needed, but more work is needed. The ALS Association is working everyday to support people with ALS and their families, including our heroes who have served in the military and who are approximately twice as likely to develop ALS as those who have not served. Many resources are available through our website at www.alsa-michigan.org as well on our national site,
www.alsa.org. Please look at these sites for information about veterans benefits, criteria for receiving benefits and information about advocacy.
If you or a loved one actively served in the military, navy or air force and is now dealing with ALS, please call our offices for information on applying for your veterans benefits. Our Patient Services Coordinators will be happy to assist you. You can reach Kristen in Troy at 248-680-6540 and Denise in Grand Rapids at 616-459-1900. We wish you a happy and safe 4th of July!
Hospice Seminar July 15th Only July 15, The ALS Association, Michigan Chapter will host Maureen Bodenbach from In-House Hospice at the Brighton Lion’s Club as she talks about hospice services and ALS. Many PALS and families who approach our office about hospice have a lot of concerns about what the program actually entails, the cri-
teria to be admitted to hospice and how it will affect the care of their loved one. Before making a hospice decision, it is important to have your questions answered and to talk with your doctor and health care team. The decision to enter hospice is a deeply personal one. If you have questions about
hospice care or would just like more information about hospice, please consider joining us on July 15th. We would love to see you there. This event is open to all and there is no charge to attend. Please RSVP to Kristen at 248-680-6540 if you are able to join us.
Patient Services News Volume 1, Issue 4
Page 2
Now is the Moment… Too often we find ourselves asking our loved one with ALS, how we can help. To often the answer is “nothing” or “I am fine”. However, Now is the Moment for you to do something; Now is the moment to get engaged in the 2010 Walk to Defeat ALS. It is our responsibility as friends, families, and caregivers of PALS to get involved. The Walk to Defeat ALS is a day of hope; a day to raise awareness; and a day to raise money for The ALS Association to allow its services to be continued for another year. How do I get involved? 1. Become a team captain- visit us online and become a team captain. Team captains are responsible for developing a team; setting and accomplishing a fundraising goal; most importantly, HAVE FUN 2. Join a team- Team members are responsible for helping the team reach its team fundraising goal and HAVE FUN 3. Be an individual walker- set a fundraising goal, help increase awareness, and HAVE FUN All walkers will receive a 2010 Walk to Defeat ALS T-shirt. Please note anyone can walk- kids, pets, adults, and PALS. All walks are wheelchair friendly. A big thanks goes out to Bill Emerson and Wendy Kemp of Quicken Loans, Walk Corporate Chair and Walk Chair, for providing leadership to this years walk. Other 2010 sponsors include: Fathead.com, Palace Sports & Entertainment, Metro-West Appraisal Co., LLC, Detroit Popcorn Company, Honigman, Bedford Group, and the Friedman Real Estate Group Inc.
2010 Walk to Defeat ALS Presented By
Detroit Walk to Defeat ALS Saturday, September 25, 2010 Detroit Riverfront Conservancy
Grand Rapids Walk to Defeat ALS Sunday, October 03, 2010 Ah-Nab-Awen Park
Traverse City Walk to Defeat ALS Saturday, September 11, 2010 Civic Center Park
Jackson Walk to Defeat ALS Saturday, September 11, 2010 Ella Sharp Park
Portage Walk to Defeat ALS Saturday, September 18, 2010 Celery Flats
Virtual Walk to Defeat ALS Anytime Anywhere
www.WalktoDefeatALS.org
Page 3
Loan Closet One of the most commonly used Patient Services Programs at the ALS Association, Michigan Chapter is the Durable Medical Equipment Loan Closet. The Loan Closet is a collection of donated medical equipment that we lend to patients at no charge, with no time limitations. The equipment in the loan closet varies from simple things like large handled forks and spoons and pivot discs to large items like power wheelchairs and hospital beds. The loan closet is made possible
by the generosity of others. We are so thankful for donations of gently used equipment that can go on to benefit other patients and families. If you have equipment needs or would like to donate an item that is no longer needed, please contact Denise at 616-4591900 or Kristen at 248-6806540. We will be happy to arrange for pick up or drop off of the equipment. Do to the frequent checking out an return of items, our inventory changes
daily. Wait lists are formed for commonly requested items. Our loan closet wish list currently includes:
Volunteers Needed to Participate in Physical Therapy Interviews Volunteers needed! How would you like to help educate future health care professionals to be more sensitive to the daily life challenges of living with a neurologic disability? Help them to see beyond the medical issues to the personal side of working with individuals with physical disability? Physical therapy is a health care profession that provides evaluation and intervention for impairments, functional skill limitations and disabilities for individuals with wide range neurologic diagnoses, such as ALS, stroke, brain injury, or multiple sclerosis. Perhaps, you may have had experience with physical therapists in your rehabilitation. At GVSU we are educating graduate students in physical therapy and we need your help!
Manual Wheelchairs Lift Chairs Pivot Discs Shower Chairs Transfer Boards Hospital Beds Large Handled Utensils Communication Equipment Hoyer Lifts
“At GVSU we are educating graduate students in physical therapy and we need your help!�
Sound interesting? The Physical Therapy program at Grand Valley State University is seeking individuals who are willing to participate in a one-session interview with a physical therapy graduate student. (approximately 1 hour) What? To answer some structured interview questions, tell your story, share your insights and perspective on living with a disability. When? Early September, 2010 (students will set up interview time with you) Where? Students can meet you at a convenient location for you (your home, workplace, coffee shop or even the GVSU downtown Health Science building & give you the royal tour)
If interested in volunteering: please contact: Cathy Harro, Assistant Professor, Physical Therapy at GVSU Phone: 616-331-5974
Email: harroc@gvsu.edu
Patient Services News Volume 1, Issue 4
Page 4 Gears & Beers: Riding to Cure ALS On June 12, the 2010 Gears & Beers Ride for a cure gathered over 120 riders and raised over $40,000 for the cause. Please read the following story we received from Sarah Crawford, one of our riders from this year.
Yesterday was an amazing day full of many triumphs and tribulations. I want to again thank you all for your words of encouragement, donations, and prayers. In regards to the one hundred miles, I am disappointed to report that I did not finish. I was only able to complete 75 miles of the race. I plan to finish my goal tomorrow and finish the 100 miles I set out to do initially. What I did do however, I am tremendously proud of. It was the longest ride I have ever completed and even when I was tired and sore, I kept going. This was truly possible because I had such a wonderful support group and riding team. Thanks Katie and Greg! Race Day Run-down: At 8:00 we were taking pictures and discussing our routes (25 mile, 75 mile, and 100 mile), and the hills we would encounter. We kissed our families and friends and bid them farewell at 8:30. Phil was there to send us off and wish us luck. Miles 1-11. Smooth sailing with the exception of one MONSTER hill on country club road. I was not sure that one would ever end. These miles allowed several groups to pass by us, one of which we would meet up with several times along the way. We did not know their names but they (like many) got lost more than once. We loved this group because they had a radio attached to one riders bike that played oldies as long as he was pedaling. "sugar, dada da da, OHHHH honey honey, you are my candy girl...". This was one of the songs that we heard. If you don't consider that an "oldie," I apologize and know that I love you (: The best part of these first 11 miles was when we saw Phil at the first rest stop. All three of us (Katie, Greg, and I) got a big boost from seeing him, one that would carry us through many hills and miles.
1st Rest Area thoughts - Dexter, MI "ALRIGHT... time for a snack. I am totally finishing this race. I feel AWESOME! My butt is feeling good. WOW! It is humid, better drink a lot of water. Good thing I have this camel pack from my mom to keep my hydrated. Thanks mom! Speaking of staying hydrated, I have to pee. What do you mean the bathroom is another mile down this path? I guess I don't have to go that bad. Mile 11-29.4 This part of the route seemed especially hilly. My legs started getting really tired around mile 15. I kept pedaling and tried not to complain. I ran out of water by mile 20 but kept going. I was working really hard to keep up with my group. This was a feeling I wasn't used to. I was not able to get up hills very easily and started to lag behind Katie and Greg. I felt really bad that I was slowing them down and had some moments when I wasn't sure I would be able to finish. I was very surprised that I was having these feelings so early in the race and began to get discouraged. I decided to keep going and just worry about one hill/stroke at a time. I told Katie and Greg to not wait for me. They both said nope and that we were sticking together. Then they told me to get in front. It was about five minutes later when Katie said to me... "Sarah your seat looks low" When she said that I stopped worrying about not finishing and started to listen to my body. Katie was right! DUH! My legs are tired! Why are they tired? Because your seat is too low! My knees were very bent even at the bottom of my stride and were aching a little. The difference was immediate! I raised my seat approximately six inches, but this was a mistake that would make the rest of the ride somewhat more difficult. I had expended a lot of unnecessary energy. 2nd Rest Area thoughts - Unadilla, " I REALLY have to use the bathroom! So
glad I can fill up my camel pack again. My legs feel better but they're still tired. It feels REALLY good to get off the bike. This should be a short stop, we need to get back on the road to make it to the 3rd rest stop before 1:00." This was the cut off time for a supported 100 mile racer. On a side note, people that had passed us earlier were just showing up as we were getting back on the road. Like MANY other riders, Kerry (Phil's wife) had taken a 10 mile "detour" because one of the roads was marked wrong. We were lucky enough to notice that the sign and our directions did not match. A car stopped (apparently we looked lost) and gave us directions. Second side note... I had my first GOO PACK (thanks Becky), FYI it tastes a lot like, and has the consistency of, a small tube of the Colgate gel toothpaste. It was VERY thick and VERY difficult to swallow. It was the first and last Goo pack of this trip. Final side note... spandex bike shorts are remarkably difficult to get back on when sweaty! This was increasingly difficult every time we would use the bathroom (which was like every ten miles, no joke). Mile 29.4-52.6 Started out really good. I had a boost of energy and made it through about ten miles strong, but Katie and I had to go to the bathroom about 10 miles in. I had already gone through two camel packs of water. It was urgent. Katie and I decided that in the next woodsy area or grassy field we would stop. It ended up being grassy. Noooo problem. Katie and I walked back into this grassy patch and stomped down a crop circle just big enough for a butt and well... so on my way out of the grass, I looked down at my legs and I had red splotches ALL over them that were definitely not there prior to the walk back into the devil weeds. I had some sort of immediate allergic reaction to the grass (which I truthfully am allergic to virtually everything with a root system) but had never experienced anything like that. What are you gonna do?
Page 5 Other than looking like I had just caught the chicken pox from the waste down, I was fine. So we kept going. I had a lot of good moments where I would get in a stride going up hills and I also got good at using the "other" side of the hill to pick up speed rather than coast. However, it was after mile 45 or so everything began to get sore and tired again. I began to remember the hard seat and the truth that I was not even half way. I began to face again the thought that I might not be able to do this. Self-doubt was the most lingering problem during this stretch. I thought about Phil and about my uncle and I wanted to keep going for them, but there were moments when things began to hurt and I just wasn't sure that I would be able to do it. "I was only half way after all and things could only get more sore from here." I shed a couple of tears somewhere in this stretch. I felt like I was letting people down and like I was letting myself down. I again ran out of water with about 7 miles to go. 3rd Rest Area thoughts - Sibley Rd. Stockbridge, " GET ME OFF THIS BIKE!!!" This was really the only thing I was thinking at this moment. Well that and "WHERE IS THE BATHROOM?!" until I found out that we had missed the 1:00 time by 15 minutes. We had to decide whether or not to do the last 50 miles of the ride "unsupported" meaning no more rest stops until the finish 50 miles from now, or the last 25 miles "supported" meaning skip miles 52.672.5 that is a side loop from the spot where we were standing that brought us back to the same rest stop and just keep going to food and friends. To go right or to go left? Sometimes it is hard to know which is the right way. Yet here we were, forced to choose. As we shoved oranges and luna bars in our faces, we slowed down a bit when we realized that it might not be the best decision to do the extra loop "unsupported." We were thankful for the rest stop and decided to continue. Mile 72.5 to Finish - By now I had figured out that it ALWAYS feels good to get off the bike and after just a few minutes of walk-
ing around, getting back on felt okay. Those rest stops were completely necessary to recuperate. I got a boost of energy right away from eating and from drinking more water and gatorade. The three of us were sad at the rest stop when we were faced with this decision to make. Limbo is never a good feeling. "wheresoever you go, go with all your heart." Upon reaching this conclusion, I felt lighter. I decided that I had already accomplished what I had set out to do which was to race and to raise money for an extremely worthy cause. I had let go of my fear of not finishing because I WAS going to finish even though I would not complete the amount of miles I had initially hoped for. I was on my way home so to speak. It was the final stretch. The race was certainly NOT over, but we were on the "other side." I felt new pain this last stretch. As I am sitting here tonight typing, I have an ice pack on my right knee. Nothing is sore except my knees and truthfully that was an intense pain for the duration of this last stretch. My sister is convinced that my knees were aggravated from my seat being too low early on. All I knew was that it hurt going up hills and over bumps (which there were plenty of those too). But even now as I have this ache, I am smiling because I know that I helped. No matter how small my part was, it was in the right direction and my heart was in it one hundred percent. It does hurt going up hills, bumps truly suck, but we DO learn from them and I KNOW that I am a stronger per-
son for having completed this journey. Getting lost... well that is all part of the journey too I guess. As bikers entered the park, there was no finish line. Just people standing around cheering and then there was Phil surrounded by those that loved him. There could be no greater symbolism of the day than this. In truth, how could there be finish line? Our work is not done. My part, not complete. I forgot about my pain when I saw my family. I forgot about all of the hills and bumps that made me weak just a few miles prior and I got teary eyed. I, like the 24 other people riding from the Hutchins Team, would do this a thousand times for the chance that it might mean finding a cure for this disease. I am proud to have been a part of this day and of this cause. Thank you for being with me on this journey both in body and/or in spirit. Sarah Crawford P.S. I am committed to doing my part to find a cure. Hopefully next year we are riding 100 miles in celebration of a cure found.
Team Hutchins poses for a pre-ride photo at Gears & Beers 2010
Patient Services News Volume 1, Issue 4
Page 6 Need to Add Calories—Try a Shake Try this recipe for a delicious, calorie-packed treat! One can of Ensure, any flavor (Ensure comes in vanilla, chocolate, strawberry, coffee, butter pecan, eggnog and black walnut) or other prescribed dietary supplement. One-half cup of ice cream, flavor complementary to Ensure flavor 2 oz. Polycose (colorless, odorless,
tasteless liquid with high calories and no nutritional value, found near baby formula). Discuss with your doctor first. Put in blender and add any of the following according to taste: • Banana • Fresh or frozen strawberries • Any fresh fruit • Chocolate syrup • Honey • Any flavoring • Oreo cookies or any other cookies like chocolate
chip, graham crackers, vanilla wafers Blend well and enjoy! For weight gain have two shakes a day in addition to regular meals. Make sure to discuss any weight loss with your doctor or medical team and be sure to notify them of any supplements you may be taking. Try different recipes and mix it up to avoid boredom!
Try adding seasonal fruit during the summer months for a fresh and health twist!
Meet our Patient Services Committee: Kathy Muir, Committee Chair “She had no idea then that the next year and a half would be so challenging physically and emotionally.”
ALS didn’t just touch Kathy, it hit her with a two by four when her husband of 43 years was finally diagnosed in January of 2007. She had no idea then that the next year and a half would be so challenging physically and emotionally. She was asked to serve on the board at that time and ALSA meetings were soon being held around her kitchen table as it was almost impossible for her to leave the house. The support of family and friends became vital along with the help from
the local ALS clinic, hospice, and patient services coordinator, Denise George. Her husband was able to attend the marriage of their son just two weeks before his death because of the loan of a wheelchair and portable battery pack. Kathy is now starting a new life with her marriage in August and is taking on the role of coordinating the Patient Services Committee of the ALSA board. She enjoys biking, travel, and dance and has three grown children (with
spouses), three grandchildren and soon another two of each.
Respiratory Issues Conference, August 4th Please join us for this free educational conference presented by Mark Orlikowski of Airway Oxygen. For those with ALS, respiratory issues are probably the most serious of medical complications. Mark will be addressing this topic and some of the equipment that is currently available. Presented by: August 4, 2010 6:30-8:00 PM Munson Community Health Center 550 Munson Ave Mark Orlikowski, LRT
Traverse City, 49684
Branch Manager Airway Oxygen, Inc. 1364 Trade Centre Drive Traverse City, Mi. 49686
PLEASE RSVP TO DENISE GEORGE AT THE ALS ASSOCIATION IF YOU PLAN TO ATTEND. THERE IS NO COST AND FRIENDS AND FAMILY ARE ENCOURAGED TO JOIN.
Page 7
July 2010 Sun
4
Mon
5
Tue
6
Wed
7
Thu
Fri
Sat
1
2
3
8
9
10
16
17
23
24
30
31
State Wide Call-In Support Group 23pm Troy Support Group, 6:30-8pm 11
12
Grand Rapids Support Group 2pm3pm
18
19
13
14
15
State Wide Call-In Kalamazoo Support Support Group 6:30 Group -7:30 pm 6:30—8:00pm
Hospice Services Seminar, Brighton Lion’s Club, 6:308:30pm
20
22
21
Bay City Support Group, 6:308:00pm
Survivor’s Luncheon, Wyoming MI, 11:30am
Walk to Defeat ALS Team Captain Meeting: Call-In 6:30pm 25
26
Fenton Support Group 6:30-8:00pm Ann Arbor Support Group 6:30-8:00pm
27
28
29
Fighting Lou Gehrig’s Disease.
The ALS Association, Michigan Chapter
675 E. Big Beaver, Ste 207 Troy, MI 48083 248-680-6540 678 Front Street, Suite 159 Grand Rapids, MI 49504 616-459-1900
www.alsa-michigan.org
Please logon to facebook and vote for our chapter in the Chase Community Giving Program. The top 200 charities receive $20,000! To vote, you must “like” the Chase Community Giving Program, then you can find us under “Amyotrophic Lateral Sclerosis Association” in Grand Rapids. Thank you for your support!