86 posts tagged “ALS”

“I feel it needs to be told”: Member Cathy shares a memory

Posted February 21st, 2017 by

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory.

Here’s what she had to say…


“I have been saving this story for a while. Don’t know why but I feel it needs to be told. It is just a little story. No twists. No turns. No big reveals. But still. A story to be told.

Around this time last year, I ran the very quickest of errands. Fred was at a time of his illness we seldom left him alone. The kids and I we were a team in hanging with him. But we have lovely neighbors close and a prescription was needed, so just for the littlest of time, he was hanging alone. But that isn’t the story.

It was when I returned that the story began. As I’ve noted many times before, Fred went to too many concerts in the sixties. He always said that. Yet, on returning from my errand, I walked in to find Woodstock live in my home. It was 1969 again.

Jimi Hendrix was playing. So was Janis Joplin. Jefferson Airplane. Canned Heat. Still not sure why John Sebastian was there. Guess we will never know.

Those who knew Fred knew he never danced. Cotillion had ruined him. But there he was, dancing as best he could dance. Stomping his foot to Hendrix, occasionally playing air guitar. I dropped the prescription and immediately joined in.

For just a little time, the joy was back. 

Thank you Santana.

I still have Woodstock on the DVR. Haven’t played it since. But I tell this story because it is a testament to ALS. It is a story of hope, of perseverance, of determination. I was always so very proud of Fred, he was my very best friend. Yet it was in that moment I saw his deep abiding strength. I saw in that moment that though ALS had robbed him of his body, it would never steal his spirit or take away his soul. In the year that he has been gone, I write these little stories to keep his memory, my memories strong. I continue to walk the ALS walks. I continue to be loud.

ALS is a beast. We WILL defeat.”

#kickoutthejams #hopeisstrong

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Meet Cris from the PatientsLikeMe Team of Advisors

Posted January 19th, 2017 by

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition.

Cris recently presented at the ALS Advocacy conference in Washington D.C., and she chatted with us about why raising her voice is so important: “Without our voices things would remain the status quo.”

What gives you the greatest joy and puts a smile on your face?

Family. Just waking up in the morning. Thankful my son and his wife have taken us in so we’re not alone on this journey. So proud of him as a dad, teacher/coach! Seeing my teenage grandson each day with his silly sense of humor, loving kindness and our talks about his day as he lays on my bed. Seeing my granddaughter every day and proud of the woman and mother she has become – we watch our great granddaughter for her while she works. I can’t hold her but I can feed her on my lap and talk and be silly with her, my husband has diaper duty! Such a joy to be able to spend time with an infant, watch her grow, smile and coo as she becomes more aware.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Without hesitation my greatest obstacle is losing independence. The ability to just get in the car to go shopping, grandson’s football and baseball games or dinner without worrying about weakness, falling or becoming fatigued causing excursion to be cut short for my “driver”. It becomes my main concern when deciding participation in outside activities – consequently I am missing out on events I enjoy.

Ironically, I never hesitate to go to health related advocacy and meeting events (near and far) – perhaps because I’m in a comfortable “safe place” with “my own”. I’m still able to walk short distances without assistance. However it’s unnerving being in the general public subject to constant stares or side glanced looks at my unstable walking. Often wonder if they think I’m intoxicated (which is funny as I don’t drink alcohol) – I’ve jokingly asked if I did drink would it straighten my gait? Upcoming wheelchair usage will undoubtedly escalate social anxiety and more stares.

Public awareness and compassion seems to be insurmountable making the question of on how to further their understanding. My thoughts are start with the young and teens – with the hopes as they grow older they will share compassion. Unfortunately, it seems, unless one has a personal experience with someone with a disease or disability they are complacent. That’s sad.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? 

Living with ALS, at least my experience so far, is like feeling your body deteriorate one stiffening muscle spasm and tingling nerve at a time all the while your brain is telling you “it’ll pass”…only it doesn’t. Mornings are the hardest moving a finger at a time, then a toe or legs carefully trying to avoid horrific muscle spasms that hurt after subsiding – as if I had just run a marathon or worked out with weights. The loss of use in one arm/hand (2 years now) was tolerable, although as a graphic designer was career ending – now my good right arm/hand is increasingly becoming deficient – although I can still type with one finger. Having someone cut my food has since altered what I choose to eat in company. The mind will still be active as the body loses every function. I’m one of the fortunate slow progression patients still with use of my weakening legs, although several falls have awakened my denial knowing a wheelchair is in the near future. It will need to be tricked out – a power wheelchair with necessary medical features geared for someone with ALS and total function loss. Eventually I’ll be unable to breathe and may use a breathing device or unable speak and with luck will get an eye gaze communicator. Without all it will be death. There is no cure. But living day to day I do the best I can to make every day count.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Take your head out of the sand. Denial is not healthy and a waste of precious time! Importantly with any disease, I highly recommend working closely with your specialist or specialized clinic. Ask about clinical trials – early in diagnosis this could be critical for acceptance in a protocol. Research trials, associations, medications, therapies…anything specific to the disease. Don’t be afraid to ask questions or disagree with treatments. Knowledge is key! Get involved in your diagnosis and it’s “your” future.

How important has it been to you to find other people with your condition who understand what you’re going through?

Extremely important to connect with my fellow pALS and their cALS for emotional and knowledgeable support. They alone understand what I’m going through but unconditionally are matter of fact about its reality. My fellow patients are a family of a disease nobody wants.

Meeting pALS who have further and advanced progression but are still active in advocacy, policy changes, clinical research and more have been my inspirations and mentors. I no longer sit on the sidelines and for them I am eternally grateful.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

So far I haven’t had a problem and had to advocate with the exception of misdiagnosis for over a year. Since confirmed diagnosis I have been fortunate my specialist is a compassionate ALS advocate and researcher who has encouraged my advocacy and participation in educating others.

What made you want to join the PatientsLikeMe Team of Advisors? 

Participating in causes was barely on my agenda the past 60+ years – which I now feel was completely selfish. I was just working, raising kids and grandkids. However, since my diagnosis I came to realize I wasted precious time when my small voice could’ve been heard somewhere making a difference. When I started a clinical trial protocol I was introduced to PatientsLikeMe and instantly felt a bond with the pALS in my forum and was pleased to have met a few at Advocacy in Washington and was surprised by their openness and requests for information and my story. Quickly I knew I wanted to help in any way possible from my diseases perspective to others who just needed a shoulder or guidance. I am thankful that I have the opportunity to “make a difference” so late in my life.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

I have a pretty good attitude and honestly know what’s in store but other members who are going through the worse aspects of this horrific disease have helped me accept reality. But, with that reality have helped me understand the journey and that I’m not alone. “It takes a village.”

Why should a patient advocate for patients care, disease specific necessary medical equipment, legislation or clinical trials?

Without our voices things would remain the status quo – healthcare would continue to be impersonal, medical support equipment for specific diseases would go unused, legislators would put clinical trials on the back burner as being too expensive – consequently patients would continue to die. My closing remarks at ALS Advocacy in DC to my state senators and representatives is a sample of my feelings for our “asks” for my incurable disease but could the message could apply to many! “In closing, I do want to remind you – in 75 years ALS has not discriminated with age, gender, race or economic status and will strike unknowingly at any moment. So, next time YOU drop a pen, choke when your drink goes down wrong, get up stiff and unable to move after sitting or laying or you stumble over that blade of grass – maybe you will think about what legislation, clinical trials and medical support you would like in affect if ALS were to invade YOUR body.”

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PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Posted December 8th, 2016 by

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.

Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND.

In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.”

Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe members and staff and said the company is ready to lead the next decade of advancements in research and medicine, with and for patients. “We changed the rules by helping patients digitize and share their experience so they could make more informed decisions about how to live with and treat their condition. Now we’re embarking on the next stage of the journey by piloting biomarker discovery in ALS and other conditions. We hope many more patients will join us as we work together to find new answers.”

More information about how to be part of PatientsLikeMe’s upcoming research in ALS/MND is available at www.patientslikeme.com/advanceals.

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                                Margot Carlson Delogne
PatientsLikeMe
781.492.1039
mcdelogne@patientslikeme.com

 


“Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Posted November 28th, 2016 by

Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. See what she has to say below…

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS

Posted November 4th, 2016 by

Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions.

Check out what he had to say about what helps him find peace and harmony while “living with ALS, not dying of it.”

Tell us a little bit about yourself. What are you passionate about?

I am a husband, father of 4 adult children, and grandfather of 2. I am all about making life better for others, especially for those living with disabilities. That involves consulting to our city administrator about accessibility, working with my national church organization to improve inclusion of people with disabilities into all aspects of church life including leadership, building an adaptive sailing program, and launching a company that provides affordable accessible housing units for sale or lease (www.roostsuites.com).

How has life changed since your diagnosis?

Living with ALS is obviously difficult, but I also have experienced many positive changes in my life. I have more time with my family and what I choose to do with my days is more aligned with my values. I have also stopped biting my fingernails!

In the forums you talk about the importance of doing what you love, like sailing. What do you like most about it, and what advice do you have for other pALS about following their passions?

I believe it is essential to find ways to enjoy those things that give you life, that uplift you. Always looking forward to something fun affirms that we are living with ALS, not dying of it.

I used to play many musical instruments, now we go to concerts. I grew up sailing, so I worked with industry experts to devise a way for functional quadriplegics to sail a boat on their own. This summer 5 pALS and 100 people with other disabilities were able to sail in our program. 4 of those pALS had never sailed before. It isn’t as hard as you might think, and we have great instructors.

Sailing is such a liberating sport. When living life in a wheelchair, mainly in a few rooms, the feeling of leaving the wheelchair on the dock and heading out into open waters, free to go wherever you want, is pure joy. It is also a great way to spend time with family and friends.

Sailing is all about working in harmony with nature to reach your goal. There is a saying among sailors “When the wind turns against you, adjust your sails.” I feel that is a perfect metaphor for living with ALS. We can’t change the wind, but we can still find peace and harmony. Sailing is good practice in finding that balance for me.

What’s it like managing multiple conditions?

Living with multiple conditions — for me, ALS and depression — is a daily exercise in a truthful self-evaluation of where I’m at, physically and emotionally. I’ve gotten much better at asking for help when I need it. We have found, too, that looking ahead to decisions down the road and staying mentally ahead of the diseases keeps us from feeling overwhelmed. Trying to make decisions in the middle of a crisis is a really bad idea for me.

 

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Patients as Partners: John and David share their clinical trial experiences

Posted June 1st, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, they share their firsthand trial experiences, offer up some advice for others, and talk about the importance of collaboration and mutual respect with their care teams along the way.

Can you tell us a little about the clinical trials you’ve participated in?

John: I took part in trials at:

  1. Massachusetts General Hospital (September 2014) – phase 2, randomized, double-blind placebo-controlled Multicenter Study of Autologous MSC-NTF Cells in Patients With ALS
  2. Bronx VA – Brain and nerve stimulation for hand muscles in spinal cord injury and ALS
  3. Weill Medical College of Cornell University – Safety of Capryclic Triglycerides in ALS: A Pilot Study

Team of Advisors member David, living with lung cancer

David: I was diagnosed with stage four metastatic lung cancer just about five years ago. June 2011. Since that time my only form of treatment has been targeted therapies which were available to me through clinical trials. The first clinical trial I received the drug Erlotinib known as Tarceva for three and a half years. The second clinical trial I am now on for about fifteen months targets a mutation that is responsible for resistance to Tarceva. The Clovis pharmaceutical company makes the drug with the code name C01686 which does not have FDA approval and Clovis recently disclosed that the drug has been withdrawn from future development. Both drugs have enabled me to live a very high quality of life and unless told nobody would know I had a terminal disease.

Clinical trials require the patient to be an active participant in the treatment modality. For me both clinical trials required that I have monthly visits to the clinic for blood work and scans every two months. The routine of my CT scans include my chest, abdomen, and pelvis plus a whole body bone scan. Normally I spend six hours at the hospital to compete these tests. That I am monitored very closely is a double edged sword. The downside is the frequency of scans exposes me to significant radiation which overtime is also associated with cancer. There is also generalized anxiety that comes with this routine. When you’re done with one cycle which includes a discussion with the oncologist about the radiology report, you automatically start to think about the next cycle. The silver lining in this cloud is that detection of new disease is caught very early and more often treatable than not – a really good benefit, which takes some of the sting out of the routine.

Have any of the partnership principles helped you get involved in these clinical trials?

John: I believe all principles apply. Respect is key; and alignment and teamwork from both parties involved.

David: “Know your needs” was the principal driver of why I entered a clinical trial. This principle requires that the expectations of the patient (me) are aligned in a partnership with the goals of the oncologist. In my situation there was a shared expectation of the value of clinical trial. In collaboration with my oncologist we discussed the likely benefits, side effects and the efficacy of the trial as a treatment plan for my advanced stage lung cancer. We shared the belief that the benefits of the trial far exceed the risks associated with taking Tarceva. We shared the value that (1) I would receive state-of-the-art treatment with the expectations that the drug Tarceva would (2) not not only control my cancer, but would extend my progression free survival of my disease.

How do you decide if a clinical trial is right for you?

Team of Advisors member John, living with ALS

John: Timing is a critical decision factor. What I mean by that is many clinical trials have two-year and three-year exclusion criteria. Also, location — most trials do not reimburse for travel or nominal reimbursement. You must believe that the trial will have a benefit, not only to you but for those to follow.  

David: In collaboration with caregivers the patient must know his/her needs in terms of the benefits and risks of entering a clinical trial. This requires that the care team fully explain the benefits of the trial versus the risk of participating. A phase one trial poses the most risk to the patient with an uncertain outcome. In contrast, a phase three trial poses the least. For example, my first clinical trial was a phase three trial where I was given the drug Tarceva with expectation that my medium progression free survival would be 12 months. In my case I did not progress until 3.5 years. Truly a great outcome despite some manageable side effects or risks.

A patient also has the opportunity to enhance the understanding of their disease. All types of clinical data captured in the study helps organizations like PatientsLikeMe market data to pharmaceutical and insurance companies who are stakeholders needed to fast-track new drugs from the bench to the clinic. In the end, your participation along with others may save or prolong the quality of your life. This possibility was the primary driver for me to enroll in another clinical trial that has kept my cancer in check, now five years, with minimal side effects.

What advice do you have for other patients who want to learn more about participating in clinical trials?

John: Research, research, research! Scour the Internet for details, speak with friends and family, ask your doctor what they think and what they see on the horizon for new trials. Be prepared to look at what’s next in clinical trials so as one completes you can start up another.

David: The decision to participate in clinical trials encompasses many of our PatientsLikeMe partnership principles. For example, where you are in your treatments phase may dictate what principles are more important than others. If you are at the start of your treatment, then you must have a very good understanding of what a clinical trial can do for you — how much more quality time the treatment offers. You can only arrive at this decision point if you and your care team have a shared understanding of the benefits of participating in a clinical trial versus pursuing a different line of treatment. Through my experience with clinical trials you are well served if you operate under the assumption that participation is a shared responsibility. Alternatively, if you reach a milestone in your treatment where you must go to another line of treatment then it is critical to reflect, evaluate and reprioritize if your current care team is the right team to meet your needs. Finally, regardless of the phase you enter a clinical trial, you must self-educate yourself

That means you have done some basic research by:

  1. Reading about relevant clinical trials on sites like the National Cancer Institute, which has a listing and description of all clinical trials in the U.S. and worldwide.
  1. Preparing yourself for entering a clinical trial by visiting the government website that explains what patients and caregivers should know about participating in clinical trials.
  1. Participating in organizations like PatientsLikeMe that have communities where patients share their treatment experiences, side effects and their success and failures. Personally, these organizations have empowered me through emotional support and knowledge of other clinical trials that may become options for me while I travel on my journey.

 

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“I learned that life is precious.”

Posted May 23rd, 2016 by

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her.

For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend.

“I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.”

Hear her story!

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“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Posted May 19th, 2016 by

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year.

Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker.

Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation. He called himself “TransFatty,” as a nod to his love of junk food. After his diagnosis, he decided to keep the cameras rolling – on himself. “TransFatty Lives” is the result of a decade of footage that shows his progression with the disease and it’s gone on to win the Audience Choice Awards at both the 2015 Tribeca and Milan Film Festivals.

We visited Patrick last month to chat with him about the film and life in general. Here’s what he had to say.

“TransFatty Lives” is available on iTunes, Amazon, Google Play, and Xbox.

 

 

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“Technology is the cure”: An update with member Steve Saling (SmoothS)

Posted April 5th, 2016 by

Recently, we paid a follow-up visit to ALS member Steve Saling (Smooth S) to see what he’s been up to and talk about future plans.

When we last spoke with him in 2012, Steve was using his expertise as an architect and his interest in technology to spearhead the ALS Residence Initiative (ALSRI), starting with the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living in Chelsea, Mass.

The ALSRI has grown into a series of fully automated residences – now in multiple cities nationwide – that allow pALS the freedom of independent living alongside 24-hour care. And just this past Sunday, the Dapper McDonald ALS Residence officially opened as the second residence at the Leonard Florence Center for Living.

“Until medicine proves otherwise, technology is the cure,” Steve says.

Watch what else he has to say in this interview.

For more on Steve and footage of the ALS Residence, here’s the rest of his story!

 

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A year of milestones for Team Gleason – and they’re not slowing down.

Posted March 15th, 2016 by

Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved a year of milestones.

Check out their year in review:

January: While attending the State of the Union Address, Steve had a meeting with Secretary Burwell, the Heads of Medicare and Medicare Advocacy, and leaders in the House and Senate.

April: In Los Angeles, the “Gleason” Project Red Carpet Premier took place and IMG Films announced their full support and partnership on the documentary film.

May: Microsoft released eye drive technology research as a viable solution for mobilizing power chairs. Through their alliance, Team Gleason is working with Microsoft to make this technology more widely available while Steve continues to test it.

Later in May, Steve addressed the Louisiana Legislature and leaders at the Department of Health and Human Services to advocate for benefits for those most vulnerable.

June: Team Gleason participated in the #SmackdownALS campaign with Microsoft in the Cannes Lions International Festival of Creativity. Also in June, Steve received the George Halas Award by the Sportswriters Association.

July: After unanimously passing both the House and Senate, the Steve Gleason Act was signed into law by the President of the United States on July 31st. This law ensures full access to and ownership of communication devices through Medicare.

September: Team Gleason initiated Answer ALS and announced $22 million in funding for its research focus.

October: On October 1st, the Steve Gleason Act went into effect! (Side note: Yes, even though it was signed into law in July, this reflects Medicare timelines that impacted the date it went into effect.)

November: Team Gleason and Answer ALS partnered with the NFL and KBS to create the ALS Awareness campaign, “Game Changer.” The first NFL ALS campaign boldly states, “The NFL has had 1,000s of game changers. ALS needs 1.”

December: The documentary, “Gleason,” was accepted into the 2015 Sundance Film Festival. “Sundance with Steve” is the 30-minute special about the premier of “Gleason” at the Festival in January.

And there’s no rest in sight for Steve and the friends and family who make up Team Gleason. When asked what are some things they plan to take on this year, Associate Executive Director Clare Durrett had this to say:

“While we feel like we have reached some of our goals this past year, there is still so much to do. Much of 2015 was focused on addressing access to Assistive Technology and ultimately the passage of the Steve Gleason Act, but that issue was just one small cog in the wheel of challenges for people living with ALS.

“Our goals are to continue pursuing more advanced and innovative technology, while finding avenues to make it more accessible and affordable. We will always continue our mission to provide equipment and technology, create and offer adventures for people living with ALS and work toward increasing awareness for an ultimate treatment or cure.

“We are so thankful for forums like PatientsLikeMe. It is such an incredible resource for people living with or caring for someone with ALS to get shared information on life with ALS.”

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“Hope makes us strong.” – An interview with ALS caregiver Cathy

Posted February 12th, 2016 by

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope.

We took time to connect with her recently and this is what we learned… 

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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“I try my best to make the most of each new day”– An interview with ALS member Brian

Posted January 22nd, 2016 by

Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012.

In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how — with a sense of humor. Here’s what he had to say …

1. Tell us a little about yourself.

I’m your average nerd who refuses to grow old, despite being 41 years old now. Diagnosed so many years ago and not having close family ties was rather trying on me. I’ve had my share of nursing home nightmares and some caregivers that made me feel like family.

Some of kids I’ve known and helped raise over the years now have children of their own. It seems like the world changes but I do not. I try my best to make the most of each new day, and it feels the proper way to accept life with ALS.

2. In your profile you write, “Many trials and tribulations of ALS have pushed me to limits that I have never thought of before.” Can you describe some of these experiences, and how your life has changed since your diagnosis? 

I have gone through some situations that doctors never thought I’d survive but the worst of it all was accepting the fact that ALS would be part of my future. Not really knowing just what was going to happen or expect. It’s that uncertainty that can drive anyone absolutely mad. Having once the illusion of absolute control and then having that revealed to me that control is an illusion was a very hard thing to accept.

There was a moment when I had my first PEG placed that the doctors (prefessionals as I call them) that I had informed them of feeling a “pop” sensation when PT wanted to have me sit up on the side of my hospital bed. Later that evening a licensed nurse had started a feeding session without checking patency. Hours later I had already had the beginning symptoms of Acute Peritonitis, all from the formula being introduced and me feeling a burning sensation.

The following afternoon I was put into a CT scanner and shuttled up for emergency exploratory surgery. The surgeons never thought I would make it after a pulse of over 180 and my body in writhing pain. After several months I had recovered but had to have my tube surgically placed along with relocation of my stomach to prevent a recurrence of such a catastrophic disaster.

3. Your sense of humor shines through in many of your posts. What advice do you have for others on keeping a positive outlook?

In my past I have had major anger issues and learned (on my own) how to channel and let go of such negative energy. I used to hop in my car and just go for a drive to unwind. Being no longer an option, the best way I have of releasing anger, fear, and such discomfort has been through humor or making light of some of the worst situations I’ve been in (in a tasteful manner of course).

Such an example was during the long hospital stay I had was the wonderful view out my window of a cemetery. I asked my doctor “If I’m not going to make it, at least it’s a short trip next door don’t you think?” It was kind of a morbid view when recovering in your second month of madness. Best to make the most of it since it was all I had at the time.

4. What has your experience been like with PatientsLikeMe? What keeps you coming back to the site?

I discovered PatientsLikeMe when trying to find an ALS support group of which this town has nothing of the sort. So an idea came up. Google has all the answers. (Siri on my phone came up with more odd results … let’s just say not G -rated support groups.)

Having no close family really makes ALS quite a challenge and I wanted to meet others in some way to compare notes, tips, tricks, and the occasional rant once in a while as ALS is such a trial on me to face alone. Having no car, nobody to help comfort my pain and frustrations. People here listen and I was surprised just how many lives I touched and look forward to reading my next update.

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Meet John from the PatientsLikeMe Team of Advisors

Posted January 6th, 2016 by

We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing.

Fueled by what he calls his “zeal for knowledge” about ALS, John has been proactive in researching programs and clinical trials that might benefit him. He’s already participated in studies at Massachusetts General Hospital, the ALS Therapy Development Institute, and Bronx VA Medical Center.

Here, John talks about the importance of being his own advocate and shares some advice for newly diagnosed patients: Keep asking questions!

What gives you the greatest joy and puts a smile on your face?
I have a passion for fishing and then cooking dinner for my family and friends who like seafood. 2 hours from catching to dinner table is what I call fresh fish. Dinner usually starts with a glass of wine and fishing tales of the whopper that got away.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
The obstacles that life has placed in front of me have given me relentless energies to not give up. I push myself and sometimes too much and others need to understand that while I appreciate their assistance there are times that I just want to do it myself.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
ALS is a neuromuscular disease where I experience progressive muscle weakness and frequent fatigue.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
Research the disease, the treatments being offered need to be in your best interests. Ask questions because doctors do not have all the answers, and if you don’t like the answers ask and see another doctor.

How important has it been to you to find other people with your condition who understand what you’re going through?
The understanding of what you are going through is paramount to understanding what’s happening to you.

Recount a time when you’ve had to advocate for yourself.
A clinical trial in Japan showed a treatment that showed promise for ALS patients and corroborated by some local doctors. Since the FDA did not yet approve it my doctor was too conservative to recommend it. I went to another doctor and am glad I did.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
PatientsLikeMe is a valuable resource to see what others are experiencing and what treatments they are trying. Additionally, the tracking of lab results and tests is a great tool to see progression and if treatments are having an effect.

How can PatientsLikeMe be more valuable to the patient community?
PatientsLikeMe can be more valuable by awareness, not all medical professionals are aware of this valuable tool to patients. The more data we have the better the product.

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