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How do we fight?
9/3/2015

By Craig Colby

My name is Craig Colby.  I was diagnosed with ALS on October 1st, 2008.  My symptoms started July 2007, and like most people diagnosed with this disease, it took over a year to get the diagnosis.  What a shock it was to hear the doctor say that I had ALS.  My wife Kristen and I looked at each other and then asked the doctor, “How do we fight this disease?”  Seven years later I can honestly report that what has helped both Kristen and I fight is by having and maintaining a positive attitude and by focusing on what we can do, versus thinking about what we cannot do because of my disease.

Our first chance to fight came about a month after my diagnosis.  With the help of about 70 of our closest friends, we formed “Colby’s Crew” and raised over $10,000 at the Greater Philadelphia Chapter’s Walk to D’feat ALS at Citizens Bank Park.  This year will be our 8th consecutive walk.  If you have never had the pleasure of doing the walk, I would encourage you to do so.

Our next “battle” occurred in March of 2012; I was admitted to the hospital with lethargy due to high carbon dioxide in my blood—my breathing muscles were   weakened and not moving enough air.  The doctor gave me two choices—either I could be made comfortable for a week or two before I died, or, I could get a tracheostomy and ventilator.   Both Kristen and I agreed that there was no way I was going anywhere; I had the surgery.  I was told that I would probably not be able to eat or speak again—by some miracle, this turned out not to be true.  To this day I can still do both.

Returning home was scary for both of us.  It was difficult adapting to the new equipment.  We couldn’t figure out how I could leave the house comfortably and safely.  Fortunately, a great buddy from Canada visited.  He insisted that we all go out.  My wife and I looked at each other and said “it’s now or never.”  So where did we go?  Local restaurant, a mall, movies, bar?  No, no, no and no!  We drove to Camden Yards and had a great time watching a 3 and a half hour baseball game!

Since that day we have been running strong and have never looked back.  I try to get out anytime I can.  I have found that while living with the ventilator can be challenging at times (e.g., it may take longer to get dressed and into a wheelchair), I feel that once we got into a rhythm, there was no stopping us.  


I believe that by choosing to get a tracheostomy and ventilator, that I made the best decision for my friends and family.  Every day brings a new adventure.  I couldn’t imagine not having that surgery and leaving my ones so early.  The ventilator has given me a second chance and life and every day I try to take advantage of this fact. 
   
If anyone has any questions or would like more information on my daily activities, feel free to email me any time at:  Kirby9504@gmail.com

What has helped us
8/6/2015

By Paul and Eileen Miller

My name is Paul Miller.  I am 58 years old.  My wife and caregiver is Eileen.  In July 2010, we lost our 21 year old son; he was killed by a distracted tractor trailer driver.  That was the worst thing that could ever have happened to us.  Then two years later, I was diagnosed with ALS.   Despite what we have been through over the past few years, despite our moments of depression and anxiety, Eileen and I fight to stay positive.  Here’s how we do it:

  • We socialize.  We try to get out of the house, go shopping, reach out and call family/friends to have dinner, hang-out and play games, cards, puzzles, watch a movie.  We have joined Facebook in order to socialize, keep up with others.  We try to enjoy ourselves, laugh and have fun with others.  We give and ask for hugs!
  • We go to ALS Resource groups for support.  We have learned so much about this disease from attending these groups.  We have formed bonds with other people who have ALS and their families; they understand what we are going through.
  • We attend and support ALS walks and other fundraisers.  They are fun!  And the people there are very compassionate.  These events may tire me out for a couple of days after, but it’s worth it mentally.  I feel inspired after attending these events.
  • We advocate for ALS in Washington, DC.  We need the funding from the government to help Doctors, Scientists and Clinics find a possible cure.
  • We rest when tired (especially me!).  We save our energy for what is most important.

Finally, everyone with ALS has different needs.  We are thankful to the Greater Philadelphia Chapter for being there to listen and guide us in this fight.

Gadgets that I have found to be helpful
6/23/2015

Gadgets that I have Found to be Helpful
by Therese Decker

I suffer from Primary Lateral Sclerosis, that is, only my upper nerves are slowly dying off. I was diagnosed in the spring of 1999; thus, I have lived with the disease for nearly thirteen years. Due to the slow progression of my disease I have had the luxury of time – time to observe the needs of my body as they changed, time to consider and experiment with different aids and gadgets, and time to find the items in a multitude of health catalogs. Most PALS (person with ALS) and their care givers are not in my position; by the time they have considered what might be needed, the problem is already moot and superseded by another, more dire physical problem.

Most of the equipment listed below is not covered by Medicare or Medigap policies.


1.    Grab Bars/Safety Bars. I have them all over the house, not only in the bathroom and bathtub.  They are helpful to me everywhere, enabling me to transfer myself safely from one place to another. A pair can be purchased for $12.00.

2.    Grabbers. These devises allow you to get things that are normally out of reach. They are about 30” long, and have a trigger which activates the mechanism. They cost $10; there is a savings if you purchase more than one. They are lightweight and easy to maneuver. I have them in every room in the house. There is another type of grabber which I call “scissor salad server”, that is, the spoon and the fork of the server are one unit and can be handled with one hand. I use it when the long grabber is too awkward and clumsy. You can get these in the kitchen section of almost any supermarket.


3.    Walkers. The walker covered by Medicare and other insurance is too heavy and awkward. I opted for a three-wheeled walker which can be collapsed and folded. I bought three different types: a super-lightweight one for easy lifting into the car, one medium weight for normal walking outside the house, and a heavy-duty one for in the house where I need reliable and strong support transferring from my wheelchair to a lift-chair.  The three-wheeler has two hand breaks which can be set. Some health stores do carry different models. All of mine were ordered from a catalog.

    There is another type of walker helpful for people who need a walker, but also need to transport things from one place to another. This walker (again available by catalog) looks like a typical teacart, but has space for the person using the walker. It has two levels, on the lower level I keep things I need all the time and I use the upper level for the items I am transporting. I can even maneuver it from my wheelchair. My trolley has no hand breaks, but they are available with breaks. These cart cost anywhere from $100 to $140.

4.    Remote Controls. I put every lamp and electrical device on a remote control. I placed the remotes in strategic places where I can reach them safely.

5.    Toilet Risers. I own two different types: one with arms to help boost me up, and a second one without arms (there is no room), but with installed safety bars to help me pull myself up. The toilet riser approved by Medicare has to do three different jobs: firstly, as a toilet riser, secondly as a walker, and thirdly as a bedside commode. Because it has to do so many tasks, it does none of them well. Again, the best selection is available through health catalogs.


6.    Swing Away Bed Rail. I found that I could not use the regulation side rail that comes with hospital beds. I found one which swings out of the way when I get in and out of bed, but gives the needed support, and it helps me turn from side to side in bed.

7.    I have many more devices. Small but important: Sippy Cups enable me to control the amount of liquid get into my mouth; then I can swallow carefully with a “chin tuck”.  They also make it easier for me to hold the cup without dropping it, and if I do drop the cup, nothing spills.

As I mentioned before: I have the luxury of time; I can anticipate future problems, and plan ahead for inevitable weaknesses.  Thus, with the aid of these gadgets – and with the timely and generous help of the ALS Association in Ambler – I have been able to lead a fairly independent life in my own home. 


If I can be of help to anyone with advice I will be glad to do so. I am also building up a library of health catalogs which I would be glad to share.


If you would like to contact me, please feel free to email me at tdecker8@rcn.com


Easy Comforts               1-800-308-1384            www.easycomforts.com
Feel Good Store             1-800-926-0880            www.feelgoodstore.com
Healthy Living               1-800-800-0100            www.amerimark.com
Dr. Leonard’s                1-800-785-0880            www.drleonards.com
Make Life Easier            1-800-522-0227            www.make-life-easier.com
Relief & Remedies         1-800-410-2153            www.ReliefAndRemedies.com
Support Plus                 1-800-229-2910            www.supportplus.com

More from Therese

The Importance of Advocacy
5/19/2015

By Rhoda Mull

My life was perfect. 

Upon awakening, I hit the ground running.  Off to work I went as an attorney at a large pharmaceutical company.  I spoke at conferences, internationally.   I belonged to two gyms, and enjoyed travel, collecting art, cooking, entertaining, theatre, yoga and reading.  I felt fulfilled with my life, that I had a sense of purpose. 

Then, over eight years ago, I was diagnosed with ALS and my life changed.

Now, I can no longer walk, speak, write, drive, dress myself, comb my hair, and brush my teeth.  I type with one finger, eat pureed food, and wear a machine at night to help with breathing. 

ALS is a devastating, cruel disease.  But I am fighting by advocating. 

I am an advocate on behalf of ALS because I want my life back.  I want an effective treatment.  I want a cure.  I want the people with ALS that I have met while advocating to see the end to this disease in their lifetime.  I want ALS patients to stop dying every 90 minutes.  That will take raising awareness and money, supporting and participating in clinical research, and reaching out to and educating our state and federal politicians.  I live in Pennsylvania so I travel to the Capitol in Harrisburg as an advocate, and also attend the Advocacy Conference in Washington D. C., both annually.  Meeting face-to-face with a politician and/or his or her staff and sharing our stories makes a huge impact.  Some remember us year-to-year, some have faced ALS personally via family, colleagues or friends, some shed tears.

I may not be able to talk but I still have a voice.

I may not have my past life but I still feel fulfilled with a sense of purpose.  I may miss my friends who were fellow advocates who have passed, but I am honored to have known such courageous people and to continue advocating in their memory.  I plan on being an advocate as long as I am able or until advocating on behalf of ALS is no longer necessary.

Participating in Clinical Trials
4/8/2015

Karen Delaney Shideleff

I was diagnosed with the familial form of ALS (FALS) on February, 18, 2011. Knowing I had a 50% chance of developing ALS, I vowed that I would do everything in my power to help advance ALS research. My mother and grandfather both had ALS & since my diagnosis my family has found out we carry the SOD1 mutation. I have participated in the ISIS Pharmaceuticals trial and the Pyrimethamine trial. I have also donated blood, spinal fluid, & tissue to various studies.

Less than 10% of ALS patients participate in trials, I want to change that by sharing my experiences with you. First, and most importantly, participating in studies and trials has given me a very powerful feeling of fighting back against a powerless disease. The psychological and emotional benefit of participating has been fantastic. I am fighting to save my family, your family and countless others and that benefit is immeasurable. Secondly, I have found that it takes time and dedication to participate in drug trials. I don't see this as a hardship as the benefits far outweigh the negatives. Many trials have compensation for travel and other expenses. If you don't feel as though you have the time to spare for a drug trial, consider participating in a clinical study. Often times it is just offering information about yourself and disease progression. You may be asked to give blood or tissue samples. Typically these samples cause little to no discomfort to the patient. And honestly, we can survive a needle stick, but we can't survive ALS!

Finally, I now fully understand why it takes so long to develop a medication and take it through the trial process. I have first-hand experience in seeing the passion and dedication our researches have. If you want to see a cure for this horrible disease, then please consider getting involved in research. There are lots of trials just waiting for you! Check out the trials posted on www.ALSA.org, www.alsconsortium.org or search clinicaltrials.gov. All it takes to be a part of the fight against ALS is a little bit of time, lots of determination to finding a cure, and YOU!

Testimonial on Supra Pubic Catheter
4/1/2015

By Mary Lou Schaeffer


Hi, my name is Mary Lou and my diagnosis of ALS was confirmed in February of 2013.  I quickly lost use of my legs, but until I did I found getting on and off the toilet to be a balancing nightmare and anxiety ridden job.  Since I live on my own I had to depend on the fire department and neighbors to pick me up off the bathroom floor each time I fell.  It became so tiring to frequent the bathroom I started intentionally dehydrating myself.  Also, I avoided leaving the house in fear of not finding a safe place and help in the bathroom.    And the worse, combine dehydration with immobility and you get a severe case of constipation.  Not to mention, it really puts a damper on happy hour.

So, I researched my options.  They were:  (1) continue falling in the bathroom, tiring myself out, staying home, being constipated and just feeling overall yucky!  (2) Wear a diaper and wait for my aide to show up and change me (3) daily self-catheterization, which is just the worse!!!  (Men have far more options)  But, then I dug a little deeper and found my solution!  The supra pubic catheter!  No more juggling with toileting or bed pans to urinate, I could drink plenty of water and have room for wine.   No more dehydration, staying home, dull skin and eyes, and no more constipation! 

The procedure is simple.  The catheter is inserted under your belly button above your pubic bone and inserted directly into your bladder.  A little balloon in your bladder holds it in place. Every four to six weeks the catheter is changed.  I am fortunate enough to have a sister that is an RN since I’m a little clumsy.    However, if you are nimble enough you can actually change it yourself.  As for the bags, they are the same as those other catheters.  At night I put on the larger bag and drink a quart of water while watching TV.  No problem with constipation in the morning!!!  And, I can assure you all that water does wonders for your complexion.

For anyone interested, particularly women, in making ALS is little easier to deal with I suggest talking to your urologist.  Please make sure you fully understand how to take care of it.  It is very important to clean the incision daily and learn what to do if your tubing gets clogged.  A good education prevents problems.  I’m going on 5 months of having the catheter and found it to be the smartest thing I could do in maintaining quality of life through this dreaded disease. 

To Fall or Not to Fall
3/25/2015

By James Harper

This article focuses on Persons with ALS like me who walk with an aid (for example, a cane, or walker).
 
I was an active, athletic person before my ALS symptoms started 9 years ago. My athletic experience had taught me the skills to avoid and minimize injuries due to falls. As a former college All-American swimmer, I had honed my proprioceptive ability (knowing where parts of my body are without looking), and, as a nearly lifelong skier, I learned to fall with minimal injury. These abilities should have prepared me to have few, if any, falls after my first ALS symptoms.

My experience during the 9 years since my first symptoms has not reflected that potential. I stopped counting after I had fallen 20 times. The number of falls per year decreased dramatically after my diagnosis, when the ALS Association gave me a walker and their physical therapist told me to use it all the time. Four months later, my falls decreased again when I got another walker for the second floor of our house, and again after one fall ended in a hip replacement. After that, I was more careful when walking, and went out less often.
 
Falling is clearly undesirable; the risk of injury is high. However, I also want to stay as active as possible, getting out of the house and staying involved in my family and friends’ activities. Every person with ALS (with or without thinking about it) faces a version of Hamlet’s dilemma: to be active or not to be active…to walk, perchance to fall. Choosing an active lifestyle increases the chance that one will be injured or disabled; an inactive lifestyle often means decreased exercise and social interaction. 

There are many ways to avoid falling, all of which involve preparation. The ALS Association, like the Phillies, has all of the bases covered. At our first visit, the social worker talked about ramps, stair climber, shower/tub arrangement, grab bars, slippery floors, etc. The physical and occupational therapists demonstrated stretching exercises to help keep my muscles relaxed, helped me pick the aid to help prevent my falls (a walker), and gave instructions on how to use it. The ALS Association has resources to help you make the choice, but the final decision is up to you. Make sure that you are confident in your choice, but continue evaluating as circumstances change.

With an appropriate aid for getting about, you can concentrate on preparing your body and mind to help prevent falls. Do your stretching exercises every day to keep your muscles loose, so you can fall more naturally. Your leg muscles, especially, need to be loose so that blood keeps flowing to the feet. This maintains the feet’s sense of touch, which helps you stay balanced and feel changes in the surface on which you are walking. As much as possible, keep your mind “in the moment” and focused on what is happening as you walk and move: your balance, the surface you are walking on, what is immediately in front of you and any obstructions or dangers ahead. It will take a lot more time to get where you want to go if you fall on the way, so don’t be afraid to take evaluative pauses. This sounds like a lot to think about, but if you practice, it will gradually take less and less effort. You will become more confident in your ability to navigate and be more relaxed.

Your mood is also extremely important: if you are hurrying, upset, angry, depressed (or even elated) before you go out, your chance of falling will be increased. If your mood starts out okay but changes, wait until it passes, or consider whether continuing the activity this way is worth a likely fall.

When going out, it is important to go with someone who can help you if you fall, or at least call for help. Always carry a list of meds that you take plus any injuries that may have required metal replacements, plates, pins or screws.

Clearly, preventing falls is the most effective way to prevent injury and should be the focus of most of your effort. Physics puts it all into perspective: an object falling freely from a height of 6 feet 2 inches takes just 0.62 seconds to reach the ground. Even in a “slow motion” fall with a walker, I have rarely had more than four seconds to do anything before I hit the floor!

When I researched how to fall, I mostly found videos with athletic people demonstrating how to fall on a padded mat in an empty gym. How artificial, how far removed from the reality that we face! Everywhere we turn, even in our own homes, there are obstacles and dangers: walls, doors, stairs, sharp corners, shower doors, tables, chairs, pets, etc. There are many types of surfaces waiting to stop our fall: hard wood, carpet, tile, gravel, concrete, and asphalt.

My search did yield something useful, though. There are three basic types of falls: forward, backward, and sideways. The instructions for each type of fall are in order of protection priority: head, spine, then extremities.

•    If you find yourself falling Forward: (1) Keep head up, (2) squat (bend hips and knees), and (3) keep arms out with palms facing ground.
•    Backward: (1) Tuck chin and round back, (2) squat, and (3) keep arms out with palms facing ground.
•    Sideways: (1) Tuck chin and grab opposite hip (falling right, grab left hip), (3) squat, (4) roll onto back.

Even with my pre- and post-ALS experience in fall avoidance, I have been able to execute no more than one or two of these instructions during any of the falls that I have experienced. Given the potential for the painful consequences of doing nothing, however, learning to avoid falls in the first place and to prevent major injury during a fall that does occur is worth the effort of practice and preparation.

Raising Kids While Living with ALS
2/25/2015

By Sarah Brendle

I try to live my life as an example for my children.  Do I make mistakes? Yes! Do I always say or do the right thing? No. But I try to be better. When diagnosed with ALS while my children were young, I had to decide how to live with the illness in front of them. I chose to embrace the time we had left and use the situation as a learning tool.  I like to find the best in every situation. And although ALS is a terrible illness that brings emotional hurt and physical pain to many, living with this illness does bring to light some amazing things we can teach our children.

Do for others. My children have seen volunteers come into our home and help me. Whether it’s folding laundry or washing dishes, they are taking time from their busy lives to ease our workload. During these times I have the opportunity to tell my children how much that means to me. Sometimes helping someone with simple tasks can make a difference. I encourage them to find ways to be helpful to others in their daily lives.

Kind words go far. Once when my daughter was two years old I was struggling to get her shoes on her little feet. My hands just weren’t cooperating that day. She looked up at me and saw me getting upset, tearful with the frustration that I couldn’t even dress my own daughter. She said “It’s ok, Mama”. All I could do was smile. And her encouragement made me want to keep trying, and yes, we got the shoes on and managed to get out the door.  I look for ways to encourage my children to say something nice to others that may be feeling a little down.

Put others before yourself.  In today’s world it is easy to become egocentric and selfish. While it is sometimes important to put yourself first, there are many opportunities for us to help one another. I teach my children that it is important to take advantage of those chances because again, even the smallest gesture can mean so much. My oldest son will stop whatever he is doing if he hears me coughing repeatedly. He makes sure I am ok and I am comforted by his concern.  My other son is the first to put his arm out to me in an icy parking lot and hold doors open for me.  I like to think that when they grow older and move out, they will continue to show kindness to others, even if they have nothing to gain.

Through these small, everyday situations as well as through larger events like fundraising and Community Partner activities, I hope my children learn the benefits of sharing their time and talents with others. I feel that if we continue to encourage these life lessons, they will grow into caring individuals with good values.

To meet my awesome kids and raise money for the ALS Association, join me at the Lehigh Valley Walk to Defeat ALS® in October!

Getting Involved
2/19/2015

By Matt Bellina

          On April 9th, 2014, I was diagnosed with ALS at the age of 30.  When I walked out of the Doctors office into the waiting room, and looked at my wife and two young boys, I thought about how we as a family would deal with this disease, and how it would shape our future.  I was determined that this disease would not stop my family from living a full and happy life.


At first, I was inclined to think of all the things I would not be able to do, but this did not seem to help in any way.  I decided to make a list of the things this disease would not take away from me as long as I lived.  I was amazed to see that this list included most of my favorite things; from watching my kids play, listening to music, reading, watching movies, to just being outside feeling the sun of my face.  There was one thing on the list, however, which at face value appeared to present a major obstacle.


The one major challenge came from the fact that I had just spent the last ten years working as a Naval Officer.  I love service and I know that I draw a lot of happiness from being able to help other people.  With ALS, I know that I will have to learn to rely on others to help me, and that they will draw happiness from their service.  I am grateful for this, but I have also discovered that being the person cared for does not mean I have to stop giving.  There is a great need for awareness and advocacy in the ALS community and I consider it a great opportunity to contribute to this cause.  I draw so much happiness from meeting with other ALS patients and families and seeing the great strength they put into the fight.


ALS is a major obstacle for me, and like everybody else I have good and bad days, but working towards being a part of the solution has given me a sense of purpose and a lot of hope.  The Greater Philadelphia Chapter of the ALS Association continues to do so much for ALS patients and families that I am honored they have allowed me to participate in their awareness and advocacy efforts.  This is one place where I know my efforts will always have worth, and I will always be able to look back with satisfaction at what we have accomplished.

Blog Because You Can

Content created by persons with ALS and are not necessarily endorsed by The ALS Association Greater Philadelphia Chapter


 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.