Blog Because You Can RSS Feed
Why I Advocate - Steve Potter
3/11/2014

As a person with ALS, attending Advocacy Days in Washington, DC is important to my wife Charlotte and I on many levels.

There is a day of seminars and meetings to learn about important issues that affect all people with ALS and their families. Many of us are particularly interested to find out about the exciting advances in research. We have listend to panels of experts from all over the world discuss research and answer questions from the audience. There is a meeting for first time attendees so that they can learn what to expect when they meet lawmakers on Capitol Hill. Breakout sessions are also held on subjects of interest.

Every year at Advocacy Days, we get the opportunity to meet with our elected officials and their staffs. We discuss ways to support the fight against ALS. All of the patients and caregivers break down into small groups with a member of The ALS Association and meet with our local Congressmen and Senators. We share how ALS has affected our lives and ask them to support pending legislation to help our cause.

There is time to get to know each other and to socialize with members of the ALS community from around the country. Last year we had a group dinner at the hotel, a candlelight vigil, and an ice cream social. These events are well attended by people with ALS, family members, and those who work at The ALS Association. Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS. It is good to know that we are not alone and that there are so many people working every day in the effort to find a cure and to treat people with Lou Gehrig's Disease.

You can also find time to explore Washington, DC while you are in town, which is beautiful in early May.

Charlotte and I plan to be at Advocacy Days this year and every year. We have already registered for Advocacy Days for 2014 from May 7-9 and we hope that more ALS families will be able to attend. We look forward to seeing you there.


Please visit http://www.alsa.org/advocacy/advocacy-day/ to register today.

My Dad's Story
2/19/2014

By Keri Gormley

Dad and IJay Gormley was a veteran of the United States Air Force, an exceptionally hard working man, and most of all a loving father and husband.

Growing up I always thought I had an average life. I was adopted from Korea by a hard-working, middle class Caucasian couple. Both of my parents provided me with everything I ever needed and did everything they could to make me succeed in whatever sport or interest I had at the moment. I always knew there was something special about my family while I was growing up, but I never knew EXACTLY what.

 

When you are a child, you are more interested in the material things your parents can buy you rather than the important essential lessons in life that they teach you every day. As I started to grow up and experience different twists and turns that life brought to the table, I started to understand that what I had growing up was no where near ordinary, in fact, it was extraordinary. It wasn’t until January of 2013 I fully understood the uniqueness of my family.

 

Early in January 2013 my dad was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS. ALS is aMy dad walking the dog progressive neurodegenerative disease that affects the nerve cells from the brain and the spinal cord, which eventually leads to death. The symptoms my dad experienced first were weakness in the legs and fatigue.

 

My dad was a walker. He loved to walk our dog and smoke a cigar. One of my fondest memories growing up was watching him walk down the school driveway with my dog in one hand and a cigar in the other. In the early stages of his battle with this disease, he couldn’t even walk a block. It then got worse. He couldn’t make it from the kitchen to the living room without being so out of breath that it looked like he ran 30 miles. That was when his next symptom kicked in, his breathing. Towards the end of his battle with his disease he was for the most part wheel chair bound and was on his bi-pap machine 24 hours a day. He lost his appetite and was skin and bone. Before he passed away he only had 33% of his lung capacity. Everyday activities that you and I take for granted, such as showering, eating, and getting dressed were daily struggles for my dad.

 

My parents over 30 years agoCan you imagine watching the real life super hero in your world degenerate right in front of your eyes? My mom had to watch her husband of 34 years grow weaker and weaker everyday while she took care of him. While working full time, my mom did just about everything for my dad, and all the while he hated having to be waited on and give up his role of being the protector of the home. Although he hated having to be cared for in that way, I knew he fell in love with my mom even more because of the undying love and support she gave him, and I know my mom wouldn’t have changed it for the world.

 

My mom was so remarkably strong though this whole process. I knew she was exhausted, frustrated, and needed help with the care taking. I did the best I could to help, but there was only so much that I could do.

 

On November 12, 2013 my dad lost his battle with ALS. Even until the end, he had a positive outlook on life and loved every second of being a part of this world. Experiencing this with my family made me realize how lucky I am to be a part of a love that is so unbreakable no matter what road block is thrown in our path. My mom and I never heard of this horrible disease before my dad got diagnosed, and it is now forever a part of our lives, and we are determined to be a voice for those who do not have their own. 

My mom and I know that one of the best ways to be a voice for others is through advocacy. There are hundreds of people here in New Jersey going through the same struggles with ALS that we did, and thousands more throughout the country. Just like my parents and I, most of the people who deal with ALS will be learning as they go, but I hope that every family can meet these challenges with the love and support I saw between my mom and dad.

 

In New Jersey, we need more funding for patient care services for people like my dad and for caregivers like my mom. I want the governor and assembly to direct funding to care services, which will help people with ALS stay home with their loved ones and get the support they need. Please share your story as well at stories@alsphiladelphia.org and find out how you can make the case for increased funding for ALS patient care services in New Jersey or in  your state.

 

 

 

 

 

Ten Years ago
2/19/2014

Written by Amanda Martin Sheehan on February 11, 2014

Ten years ago today I lost the first man I ever loved and the first man to love me unconditionally, my Dad. I was definitely a Daddy's girl and proud to be one. While I miss him terribly every day, especially for my children, I carry him in my heart, get pieces of him through my mother and brothers, see him in my daughter through her brightness as well the number of times she looks in the mirror... (even at 3), see him in my son's face and also in myself and my constant ability to be straightening things. He is always present thank God. But I don't write this post for sympathy or condolences or even for myself. I have had amazing and unending support from family, friends, acquaintances and even strangers. Thank you! I write this post to continue to raise awareness about ALS, Lou Gehrig's disease, to which my father succumbed. It's a horrifying and tragic disease affecting so many and their families. They and the associations/people who assist them continue to need support whether it be through donations, volunteering your time, lending and ear or whatever you can think of and do. Any effort you can make in the future is truly appreciated. It's what helped us get through it all. Love you Dad!

 

Amanda's entire family is very involved with the Walk to Defeat ALS. Click here to join a Walk to Defeat ALS near you and walk for an important person in your life who is affected by  Lou Gehrig's Disease.

 
Three Years with ALS
2/18/2014

By Karen Delaney Shideleff

Today is a big day for me. On this day in 2011, I was diagnosed with ALS. I want to take this opportunity to thank everyone for the support you have shown me over these last 3 years. There are days that I cannot believe 3 years have flown by, and there are days that I feel each and every one of those days sliding away from me. Some days I feel like I can take on anything, and other days that I wonder how much longer I can do this. I am always being asked about how I'm doing, and it is a very hard question to answer because I never know how much people really want to know. It is sometimes difficult to give an honest update because I do not want people to be saddened and feel pity or sorrow for me. I will follow the example of some of the wonderful friends I've made through various pALS (people with ALS) connections, and give it to you straight. It's alright if you don't think you can handle all the details, stop reading here and know that I am doing better than I ever expected I would be 3 years into this disease.

Physically, I am feeling the effects of ALS in pretty much every part of my body. I don't have pain, it is more discomfort, soreness and cramping that I feel. Because I like to be different, my progression has been unlike most ALS patients, and even different than my mom's ALS progression. My ALS is going from proximal to distal- starting in hips and shoulders and now branching out to my legs, arms and neck. In some ways I think this is better for me, giving me more independence at home, but works against me for things like driving, which I haven't been able to do for over a year now. I have a lot of muscle fatigue and stiffness, especially towards the end of the day. One funny example is that sometimes my middle finger of my left hand wants to be stuck straight when the other fingers curl. :-) Amazingly, I can still stand and walk small distances with my walker. Because my hips are so weak, my balance is horrible. I tend to spend most of my day with my trusty sidekick, Wilma (my power wheelchair.) I think my days on my legs are sadly coming to an end:-( Imagine that lovely drunk feeling where you are loosey goosey and swaying to the music- that's how my body feels stone sober. My biggest problem is that when I fall over, I usually get hurt and I do not have the strength to get myself up. (Insert "I've fallen and I can't get up joke" here.) Thankfully, I have not fallen in several months. That is the top reason why I spend a lot of time with Wilma!

Admittedly, my handwriting has never been very good, but it's really BAD now. If you have sent me cards or gifts, have come to visit, brought us meals, please know that I truly appreciate everything. I thank you from the bottom of my heart, but will not be sending you an illegible thank you card!!! I am also thankful that the big hair days of the 1980's are over as I cannot imagine drying, curling and spraying my hair for an hour. Most days I'm happy just to wash it! Dressing can be a chore, so if you come to visit I expect you to be in yoga pants and comfy clothes like me. I've even had friends come in their pajamas!

Unfortunately for Bob, I can still talk a mile a minute... I have noticed some changes in my speech and swallowing, but nothing that is impacting my life at this point. I have always been an (overly) expressive person, so I have some faces that can definitely convey my feelings for when my voice can't!

Mentally, I am also doing better than expected. I have had some sad moments, missing the old me. I miss the independence and spontaneity of my pre-ALS life. I miss working- all the camaraderie with my fellow nurses and I miss helping people. I really miss the good stories that would develop from working with the general public. If you have any friends that are nurses, you would completely understand! But through everything, I know that I have been blessed with the greatest family and friends, and with my rock, Bob. I lovingly refer to them as my team. They keep me going, they remind me that I am still the same person on the inside, even if the outside is in a new & crappy package. Throwing down the ALS card doesn't even work on them, they don't let me get away with any bs...

I have probably laughed and cried more in the last 3 years than I had for the 10 years prior. I still have my sick and twisted sense of humor, probably worse than before! I am grateful for the life I have and for all of
my family and friends that are fighting ALS with me. I love keeping up with everyone on Facebook- laughing at your stories, looking at your pictures and keeping tabs on you. I hope to see many of you this spring and summer when this snowy weather ceases! One of the best lessons I have learned in all of this is to keep your loved ones close and never miss an opportunity to tell someone how much you love and appreciate them!

My Daily Reminder
2/11/2014

By Tony Heyl

Communications and Public Policy Manager

It has been about three years since I saw the job posting. The ALS Association Greater Philadelphia Chapter was looking for someone who could handle both communication and advocacy. As I read the posting, it felt like it was written just for me. My background is communication and writing. I’ve worked on many public policy issues for a decade. Most importantly, ALS is a disease that is close to my heart. 

I still remember the day that I was home with my family in Pittsburgh and we went out to a restaurant to celebrate my dad’s birthday. My Grandpap, Regis Heyl, walked to go to the bathroom and we noticed he was having serious trouble moving his legs and feet properly across a very short distance. As ALS families know, it got worse from there.

 

 

Let me take you back further though, to a time I actually don’t remember. This picture is from my first birthday:

In case you can’t tell, I’m the adorable tyke in the front. This picture has four generations of Heyl men with my dad, my grandfather, and my great grandfather. Even though I’m walking away in this picture, we were always a very close family. When my parents went to work, I often stayed with my grandparents all day. I still remember playing with my Uncle David’s Lego set with my grandpap and then bringing over my Nintendo always laughing hysterically when I’d pause the game at the right moment to mess up my grandfather’s chances of making Luigi do anything productive. For many years, my grandparents hosted a family picnic every Labor Day and my dad and I would see my grandma every Saturday for as long as I could remember, first at the cafeteria at Woolworth’s in Pittsburgh until eventually, after my grandfather retired, we would see both of my grandparents on Saturdays at the local pizzeria ”Bellisario’s.”

So, as you may imagine, it was difficult seeing my grandfather struggle every day as Lou Gehrig’s Disease devastated his body. Within a few months of that birthday party, my grandfather was diagnosed with ALS, something that was understandably very hard for my grandmother to accept. They were married for over 50 years and the wear and tear on her was almost as bad as what he was facing. I think of her often when we see husbands and wives here at the Chapter who desperately want their loved ones to get better or, at the very least, to not get any worse.

 

 

 

It didn’t take long for my grandpap to get a walker, but that quickly proved too challenging for reasons we had trouble understanding and he had trouble communicating. Now I understand all too well that ALS wasn’t just taking away his leg strength, but it was taking his hands and speech as well. He moved onto a wheelchair and then, roughly a year after he was diagnosed, had to move into a nursing home facility because it was just too challenging to live in his own house, a home that my grandparents had lived in for over 30 years.

 

 

 

One year later, my grandfather passed away. That was in 2007.

 

 

 

There were so many things that we didn’t fully understand then. My grandfather served in the Navy at the end of World War II and also during the Korean War, but we didn’t realize then that military veterans are twice as likely to be diagnosed with ALS. Now ALS is considered a service connected disease. We didn’t know that there would be an ALS Registry or an ALS Research Project at the Department of Defense. Now both are being funded with millions of dollars per year because of the incredible advocacy efforts of ALS families. We also didn’t know about many services that could be available and now I see the value and importance of things like the Howard I. Abrams In-Home Care Program which helps people like my grandfather stay in their homes with the people they love.

 

 

One of the most important things I learned was that you don’t know what you don’t know. It took years to fully understand and appreciate how many challenges my grandparents faced during this difficult time and to then realize how many other families face the same challenges and more. My grandfather was in his 70’s when he was diagnosed with ALS. He had retired and seen his grandchildren grow up, got to be with the love of his life for over 50 years (he still called my grandma his girlfriend after all that time), and he had visited places like Hawaii and Germany. Since I have worked at The ALS Association, I have seen many people with the disease much younger than my grandfather, many of whom are parents of young children, or people who don’t have a family network to help, or even people who have not yet turned 30.