74 posts tagged “ALS”

“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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“Do not give up, find a reason to keep going.” – An interview with ALS member Lee

Posted January 4th, 2016 by

Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive attitude with others.

We recently had the chance to catch up with him. Here’s what we learned…

1. Tell us a little about your life. You’re retired – what are you most passionate and interested about right now?

I have been fighting this disease for 27 years, it has been a rough road, but I am so grateful for the time I have been given. I worked up till 10 years ago, then I retired because I could not do my job anymore. My passion in life right now is to enjoy my family, and to live long enough to see a cure. I like watching TV, playing video games, do as much Tai Chi as I can.

2. You say in your profile, “If you think you’re going to die, you will so I keep going.” You’ve maintained a very positive attitude. What helps you do this?

I have always felt that a patient must try to keep as positive as possible, otherwise depression sets in and that is not good mentally or physically for the body. It is hard to do that with what we go through but once you get over the shock and fear of the diagnosis, you will start trying everything to slow down the progression and to find ways to cope. I use humor to keep going, even though the pain is horrible I refuse to give up.

3. You also mention your grandchildren. What’s your favorite thing about being a grandpa?

I have 8 grandchildren ranging from 2-14: 4 girls, 4 boys, my oldest grandson had stage 4 brain cancer a couple years ago went through 56 weeks of chemo, he is now in remission. I figured if he could beat it, I can beat mine. They are the world to me and the reason I keep fighting, I want to live long enough for them all to be old enough to remember their papa. I have an 11-year-old granddaughter who has been able to flush my feeding tube since she was 7, she is my mini nurse, I call her little bit. I am blessed to have them all living in a 20-mile radius of me so I see them frequently. I think my favorite thing about being a papa is making them laugh and watching them play and grow.

4. You’re quite active in the forum. What does it mean to you to be able to connect with other PALS?

I really enjoy PatientsLikeMe, I welcome every new patient that joins, I try to help and answer any questions and questions they may have, and I ask them questions. I have talked to patients all over the world, every patient is different, we have lost a lot of the ones who were on this site for a long time and it is always sad to see another one pass, I do not know most personally but feel they are part of my family because we have been in contact for so long.

5. What would your advice be for someone newly diagnosed?

My advice for newly diagnosed patients would be just because the doctor gives us 2-5 years to live does not mean we have to die in that time frame. I have known patients that get the diagnoses of ALS then they go home and give up, those patients do not last long. Stay as active as possible, exercise but not so much it hurts or tires you out, keep your weight up, seems to help slow down the progression, if you’re going to get a feeding tube do it before you need it and before you get to weak in your breathing, it will be an easier operation if you are healthier. I have found that if you start on a bipap breathing machine if only a hour a day before you really need it, it will give your lungs a bit of a rest, and could prolong your life. Get into a stem trial or drug trial if possible, and most important do not give up, find a reason to keep going, set goals for yourself, when you reach those goals make more, we all have to have a reason to keep going. I take lots of vitamins, do they work I do not know for sure but I am still here after 27 years so it is not hurting me, one of the main ones is CoQ10, and coconut oil I hear is very good for patients.

 

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“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Posted December 28th, 2015 by

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community.

We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned …

1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy?

I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, and even worked at a greenhouse for 3 years.

2. Can you describe how life has changed for you since your diagnosis in 2008? 

I was in the process of becoming a teacher while working and raising a family when in 2006 my voice sounded raspy and different. I was diagnosed at Duke as was my sister 2 years before. Our father had the same MND, probable ALS. Most genetic types of ALS account for only about 10% of all cases and ours is slow progressing Bulbar type. So ours is pretty rare.

3. What inspires you to keep a positive attitude?

I think my faith helps me and the fact that most people with ALS don’t have a slow progressing form. I feel as if I have been given more time to advocate and spread awareness, so that’s what I do. I spend a lot of time in different forums, chat rooms, ALS Facebook groups and of course PatientsLikeMe trying to give and get advice.  In the case of PatientsLikeMe, I can also get data I can use to make more informed decisions regarding my healthcare and wellbeing.

4. You were recently an InMotion participant in Richmond’s Walk to Defeat ALS in October. Tell us a little about this event.

This yearly event raises money that goes to help local PALS (Person’s With ALS), like me with all sorts of stuff like equipment, support, technology, respite care and more. ALS can cost hundreds of thousands a year in the later stages and having access to equipment free of charge is one less worry we face. My local chapter has supplied me and others with a lot of equipment.

5. What has your experience been like on PatientsLikeMe? You recently posted in a forum about long-term ALS patients – what does it mean to you to be able to connect with people who are going through a similar time?

Connecting with others for support, to learn I’m not alone, and the data tracking features are very important to me. As I said before, I belong to many ALS support groups and forums but none can compare to PatientsLikeMe. It’s such a novel concept where users can set parameters and track data while getting support and answers. I have a complete history going back to my diagnosis to show any doctor, of all sorts of things relating specifically to ALS.

6. If you could give one piece of advice to a newly diagnosed person, what would that advice be?

Advice to newbies, prepare for the progressive nature of this disease by being proactive in your healthcare. Take advantage of your local ALS Chapter for equipment and support and reach out to others who have been where you are now. It’s amazing how beneficial it is to communicate with others going through similar circumstances.

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Your data doing good: The Lithium study

Posted December 18th, 2015 by

During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. And this time, we’re starting at the beginning. 

As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease. Two years later, we had an amazingly engaged and research-focused community who were willing to share data to change what the world knows about ALS. This neurodegenerative condition is fatal and takes away people’s ability to walk, speak, use their arms, and eventually breathe. This is exactly what happened to our founders’ brother, Stephen.

So, in 2008, when the results of an Italian clinical trial were published in a highly respected scientific journal saying that the use of lithium carbonate could slow the progression of ALS, we had a member community that was hungry to learn more. Spearheaded by two very involved members – a Brazilian ALS patient named Humberto and a caregiver in the US named Karen – we set out on a journey to collect and analyze thousands of patients’ real-world data to understand how lithium carbonate was working beyond the clinical trial setting. The result was unexpected and unmatched in the world of medicine.

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Gus’s story

Posted December 7th, 2015 by

Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS. Here he talks about his hope that the data he donates will help not just one person – but many.

Here’s more of his story:

 
You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.
 

 
 
 
Data for you. For others. For good.

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PatientsLikeMe Encourages Sharing of Health Data for Good with 2nd Annual “24 Days of Giving”

Posted December 1st, 2015 by

The Gift of Health Data Can Help Others, and Advance Research

CAMBRIDGE, MASS., December 1, 2015—On this #GivingTuesday, PatientsLikeMe is once again celebrating “the new tradition of generosity” by encouraging people to donate something unusual but vital: their health data. Starting today and continuing for #24DaysofGiving, PatientsLikeMe is asking anyone who is living with a chronic condition to donate their health data after donating to their favorite non-profit.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can see what’s working for patients like them, and what’s not. Health data includes information about a disease or condition—how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe also analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

Michael Evers, Executive Vice President of PatientsLikeMe’s Consumer and Technology Group, said that members donated a record amount of health data last year, the first time the campaign was introduced. “Tens of thousands of new and existing members answered the call by contributing treatment evaluations, symptom reports and other health updates. But they didn’t stop on the first day of giving. They shared their data over the course of the entire month, and continued to do so this year. I hope others will join us again so that everyone has the best information to make decisions, and we can continue to bring real-world perspectives to research.”

PatientsLikeMe plans to give back in several ways during the campaign. While it returns study results back to participants as quickly as possible, the company will once again showcase some of the most important research that has benefited from patient data in the last year and beyond. It’s also making a donation of up to $20,000 to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

Members use PatientsLikeMe for a range of reasons. For some, tracking their condition is the most vital. Allison talks in this video about living with bipolar II, and how she uses PatientsLikeMe to track her moods. “I haven’t had any episodes in the last five years because I have the data to link all the pieces together. I’m prepared because of PatientsLikeMe.”

Gus, who was recently diagnosed with amyotrophic lateral sclerosis (ALS), contributes his data to make sure others like him have a game plan for living with the condition. “The person who has just been diagnosed isn’t thinking about anything else. Their head is spinning. I want to create a manual so that others can understand what’s working for me and anyone else living with ALS, and make educated decisions to improve their quality of life.“

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter and Facebook social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

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 non-profits develop more effective products, services, and care. With more than 380,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Meet Gus from the PatientsLikeMe Team of Advisors

Posted November 24th, 2015 by

Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in May 2013, it’s been difficult both mentally and physically.

But even though it takes every bit of his energy, he refuses to waver. Over his 30-year career in the automotive industry, Gus enjoyed helping people – and now he’s bringing that calling into his new role as an Advisor and how he lives with his condition. He looks forward to bringing his positive energy and thoughts to anyone and everyone.

Here he talks about his greatest obstacles and has some sage words for those newly diagnosed.

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?

Being told you have an incurable disease sets you back ten steps. I thought, I had it all figured out and then this happens. I had worked so hard and was mastering my craft, teaching others through examples and walking them through the processes. I talk about my career because I was focused and determined to succeed. Not only for my family, but all those who believed in me through vision and aspirations. I enjoyed having fun, and being with those who enjoyed life. I miss the Friday night dinners and dancing until midnight. My workouts, running 4 miles every other day with my son releasing the tension and anxiety, it would clear my mind and would help me refocus my thoughts and follow-throughs. And how my family felt, their thoughts and concerns hurt the most. I believe whatever happens in the future will be even better, why do I say that because I have faith and their is no other person like me, Mr. Optimistic, bad habits are hard to break. I believe what we are doing now will create the compassion and awareness world wide. We are not alone.

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

I would say, listen and take it all in. Give yourself as much time to absorb everything. Understanding everyone is different and reacts differently. Your caregiver or partner will have as much or more input, simply because your thought process will take time. Have an open line of communication and don’t hold anything back, your concerns and how you are feeling mustn’t be held inside. Together and with family support will help you get through this. Have an open mind to trying different types of medical treatments. Your diet, is critical, and a holistic approach would benefit greatly.

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

It’s very important, simply because you can share your treatments or how you are dealing with it. Patient to patient interaction is vital and paramount, sharing your thoughts and concerns are key. Just talking to someone with the same illness you feel a sense of ease. It hard to describe but they know and understand exactly what’s happening. And for me, it’s half the battle I thought at the beginning it would be difficult but it’s not. So, I will run into the next question just a bit. PatientsLikeMe, and how wonderful this amazing site/ forum has helped me connect with those living with the same illness. Sharing our thoughts and treatments, and stories great stuff.

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

As I mention earlier, this site/forum is my medicine where I can share how I’m feeling everyday, your physical body and mind. It’s the best thing out there, no other site or forum compares to this site. Sharing your stories and what treatments have worked or not, getting real answers and asking the tough questions only to be answered by those living with this illness. A site, filled with so much information and helping you follow your own health chart. And tracking and inputting your conditions will help others on the site as well. Your words uplift others like no one else can, because they see themselves in you. I call it sharing your “wins” and then counting them each and everyday, reminding yourself of what you have accomplished. Positive in and positive out.

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

Posted October 19th, 2015 by

Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015-2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing new ways for the healthcare industry to connect with patients to deliver better care.

PatientsLikeMe CEO Martin Coulter said that in an era when patients must be front and center in healthcare discovery and development, the group’s mission is vital to every patient, pharmaceutical company, regulator, payor and provider. “This advisory team includes some of the strongest patient advocates we have ever met. Their experience can empower other patients, and help those serving patients understand what it means to be a good partner. The team’s work will help create a stronger foundation for a more equal and participatory system of care.

More than 1,400 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. The nearly equal mix of men and women are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), bipolar II, cancer, Type 1 diabetes, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lupus, major depressive disorder (MDD), multiple sclerosis, Parkinson’s disease and post traumatic stress (PTS). Members named to the team include: Christel Aprigliano, Craig Braquet, Jeff Demers, Cyrena Gawuga, David Gewirtz, Phyllis Marchand, John Michael, Gus Prieto, Laura Roix, Patti Sanner, Allison Silensky, Angela Stogner, Doug Thornburg and Peggy Zuckerman.

Christel Aprigliano is living with Type 1 diabetes and believes that the key to a good partnership is a focused, data-driven discussion on what matters most to patients. “Patient reported outcomes are crucial to the healthcare conversation. The more information we can share about what life is like for patients every day, the more questions we can ask each other, and the better we can help patients live well with the disease they have.”

The 2015-2016 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times in the coming months. This is the second Team of Advisors the company has formed. Last year, the inaugural group provided feedback to the research team and published a best practices guide that outlines new standards for how researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Talking brain donation with Dr. Deborah Mash

Posted September 1st, 2015 by

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below.

What led you to study diseases of the brain? 

The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease.

How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science?

Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to another person. Transplanted tissues are used in surgeries to repair damaged bones and joints. And these donated tissues are also important for research studies to advance best practices that are used by doctors. The gift of a brain donation supports research studies that will bring about new treatments, better diagnosis and ultimately cures for disorders of the human brain like Alzheimer’s disease, Autism, ALS, schizophrenia and depression, drug and alcohol addiction, bipolar disorder, and multiple sclerosis to name a few.

A brain donation does not interfere or delay a family’s plans for the funeral, burial or cremation. There is no cost to the family to make this final gift.

What brain bank research would you most like to share with the PatientsLikeMe community? Our ALS, MS, Parkinson’s and mental health members might be interested to hear about brain bank research for their conditions.

Studies of the human brain have led to seminal discoveries including the loss of dopamine neurons in Parkinson’s disease and the association of beta amyloid with Alzheimer’s disease. Without examining the human brain after death, these discoveries could not have happened. Medications for Parkinson’s disease were advanced because scientists identified the loss of dopamine that causes many of the symptoms.

We have new technology that provides an unprecedented opportunity to rapidly examine large-scale gene expression of human brain for the first time. This powerful approach can facilitate understanding the molecular pathogenesis of Amyotrophic lateral sclerosis (ALS), a disease that is usually fatal in five years. Motor neurons in ALS undergo degeneration, causing secondary muscle atrophy and weakness. Studies of ALS in human brain are beginning to identify multiple processes involved in the pathogenesis of ALS.

We have yet to fully understand the progression of multiple sclerosis (MS).

This disease is different for everyone who has it. The symptoms it causes and when they flare up is different not only between people but also throughout one person’s life. This makes the diagnosis difficult and complicates treatment. The science behind MS is slowed because there are too few brains donated for research. We get many more requests for well-characterized MS cases and too few brain specimens are available to support the research. This lack of donated brains from MS patients is a barrier for MS research.

Examining the brain after death is important to understand how well experimental treatments are working in clinical trials to see if the drug did what it was supposed to do. An autopsy follow-up on 13 patients from a recent Alzheimer’s drug trial showed that although the drug had cleared the beta amyloid protein, it hadn’t changed the course of the disease — an incredibly important observation needed to advance the direction of Alzheimer’s disease research. The same is true for anyone who participates in clinical trials for any brain disorder.

When you ask people (or their family members) to consider donating their brain to UMBEB or another brain bank, what do you want them to know?

A brain donation is a final gift that contributes to the health and well being of the next generation – your children and grandchildren. It is a very special endowment that lives on by advancing research that can lead to the next scientific breakthrough.

People who want to be organ donors typically sign a card letting others know their wishes, but brain donations require an additional pledge card. This is not always well promoted. How can PatientsLikeMe members who are interested in brain donation obtain the special brain donation pledge cards?

It is important to make your wish known by registering in advance. We make it an easy process and provide donor registration cards for your wallet. You can share this information with your family and friends. You can request information or become a registered donor by visiting us online at http://brainbank.med.miami.edu or call 1-800-UM-Brain.

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Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation

Posted August 14th, 2015 by

In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004.

Mary Ann Singersen also has family experience with the neurological condition. Her father, Edward, was diagnosed two years before Stephen, and she co-founded the A.L.S. Family Charitable Foundation, now a partner of ours here at PatientsLikeMe. Mary Ann recently sat down for a blog interview and spoke about her inspiration to start the organization, her philosophy about ALS and what advice she would have for anyone living, or caring for someone, with ALS.

Can you share with our followers how your own family’s experience with ALS inspired you to start the A.L.S. Family Charitable Foundation? 

My father, Edward Sciaba Sr., was diagnosed with ALS in 1995. Going through this ordeal really opened my eyes to the plight of not only the patients but their families as well. In 1998 he lost his battle with ALS.

Our Co-Founder Donna Jordan also lost her brother Cliff Jordan Jr. to ALS the same year. (Our “Cliff Walk” is named for him).

We met through volunteering in the ALS community and thought that since we already had the Walk in Cliff’s name, we would like to be sure that the funds raised were used to help patients with their financial and emotional needs. We also wanted to further research efforts so we donate a portion to ALSTDI and UMASS Memorial Medical.

Donna and I went on to co-found the A.L.S. Family Charitable Foundation and we pride ourselves on our ability to put patients and their needs first. We offer many in-house programs that help with family vacations, day trips, respite, utility bills, back to school and holiday shopping, college scholarships for children of patients, etc. At this time, our programs are restricted in that they are available to New England area residents only.

We know you have your biggest event of the year – The 19th Annual “Cliff Walk” For A.L.S. – coming up on September 13. Can you share some more information about the event and its history? How can people get involved?

My co-founder and friend Donna Jordan’s brother Cliff was diagnosed with ALS at 34 years of age and he wanted to do something to support research efforts, so he held a walk on the Cape Cod Canal and 60 people came and raised $4,000.

Every year since then, the Walk has grown and grown. Last year, we welcomed 1,500 participants and raised over $220,000.

The “Cliff Walk®” is a seven mile walk along the Cape Cod Canal followed by live musical entertainment, fun activities for the whole family and lots of great food! If folks wish to come to the Walk we ask them to download a pledge sheet or make an online fundraising page.

On your website you say, “Until there is a cure…there is the A.L.S. Family Charitable Foundation.” Where do you and the organization see research focused in the future? What’s the next step? 

I can only say that I hope with all the funds raised by ALS organizations around the world and with the success of the Ice Bucket Challenge, there just has to be a cure on the way. In the meantime, we are here to help in any way we can.

We’re thrilled to be a partner of the A.L.S. Family Charitable Foundation. How do you think those living with ALS can benefit from PatientsLikeMe? How can PatientsLikeMe ALS members benefit from the A.L.S. Family Charitable Foundation? 

PatientsLikeMe is a great resource for anyone living with any condition – not just ALS. It’s also great for caregivers. ALS patients more than any other condition are online researching their symptoms, what helps, what doesn’t. They and their collaboration with each other may hold the key to better treatment options and someday maybe a cure.

Our Foundation prides itself on putting patients and their needs first. Our services are open to New England area residents and include granting funds to help with equipment, bills, respite services, college scholarships to children of patients, vacations, day trips, back to school and holiday expenses and any other needs we are able to meet. So please if you or a loved one have ALS and live in New England contact us for assistance. Call Debbie Bell our Patient Services Coordinator at 781-217-5480, email her at debbellals@aol.com or call our office at 508-759-9696 or email alsfamily@aol.com.

We also wish to find a cure for our loved ones living with ALS, so we fund research efforts at ALS TDI and UMASS Memorial Medical Center.

From your own personal experiences, what advice would you give to someone living with ALS, and to his or her family members and friends? 

Take help anywhere you can get it. Don’t ever feel like you shouldn’t ask because someone who needs it more will be denied, or because you have received help from another organization. Funds we and other organizations raise are for you and people like you.

If you or a loved one has ALS and live in the New England area, visit the A.L.S. Family Charitable Foundation website for more information and to request assistance.”

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Getting to know our Team of Advisors – Steve

Posted May 29th, 2015 by

A few weeks ago, Amy shared about living with a rare genetic disease in her Team of Advisors introduction post. Today, it’s Steve’s turn to share about his unique perspective as a scientist who has been diagnosed with ALS. Below, learn about Steve’s experience with ALS research, his views on patient centeredness and what being a part of the Team of Advisors means to him.

About Steve (aka rezidew):
Steve is a professor of Developmental Psychology at the University of North Carolina at Chapel Hill. He was diagnosed with ALS in the fall of 2013 and his symptoms have progressed with increased debilitating weakness in his arms and hands. He was excited to join us as an advisor to lend his expertise on research methodology to the team. He has authored or coauthored an impressive 6 books, 91 peer reviewed publications, and 26 published chapters. When we talked about giving a background on research methods to the team, Steve said ‘I can teach it.’ He is passionate about helping teach others and believes “as a scientist who has been diagnosed with ALS, I regret having this disorder but I am eager to use my unique perspective to promote and possibly conduct relevant research.”

Steve’s view of patient centeredness:
“The obvious perspective is that patients should have some voice in decisions regarding what research should be conducted, what the participants in research should be expected to do, how participants in research should be selected, and how results of research should be communicated.”

Steve on being part of the Team of Advisors:
“Being a member of the Team of Advisors has helped me understand a wide array of perspectives on patient-centered research based on my interaction with fellow patients who have various health problems and who have various levels of knowledge about research. I am impressed with the consensual consolidation that has emerged from the Team’s dialogue about research.”

Steve’s experience with bibrachial ALS and research on ALS:
“A diagnosis of ALS can be associated with several different configurations of symptoms. Some PALS (Patients with ALS) begin with problems in their feet and legs, some begin with difficulty talking and/or swallowing, and some, like me, begin with weakness in their hands and arms. Also, some PALS start relatively young and have other PALS in their family. And, some PALS have dementia. We all lose our ability to breathe eventually and our array of symptoms broadens, but our initial experience can be very different. I am surprised and disappointed that the medical community has not done more to identify our subtypes and to track our progression within our subtype.

Developing a PALS taxonomy would help doctors provide support to PALS that is most relevant to our needs. It would also help us share our experience with fellow patients and learn from each other. An ALS taxonomy would also be extremely relevant for research on treatments. Ongoing research on ALS using rodents with SOD1 mutations may yield an effective treatment someday, but for now PALS would feel more supportive of this research if it used models that reflect the different taxonomies of ALS. We would feel even more supportive if more research allowed us to participate in studies that focus directly on medicines that could help our ongoing progressive terminal illness.”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

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What can you do to challenge ALS in May?

Posted May 4th, 2015 by

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective.

This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments.

In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. If you don’t know their family’s story, watch Jamie’s TED Talk on the big idea his brother inspired.

So how can you get involved in ALS awareness this May? Here’s what some organizations are doing:

If you’ve been diagnosed with ALS and are looking to connect with a welcoming group of others like you, join the PatientsLikeMe community. More than 7,000 members are sharing about their experiences and helping one another navigate their health journeys.

Don’t forget to keep an eye out for more ALS awareness posts on the blog in May.

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1 http://www.alsa.org/research/about-als-research/genetics-of-als.html

2 http://www.alsa.org/about-als/facts-you-should-know.html


PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

Posted April 20th, 2015 by

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent presentation on patient-focused drug development with Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety. Catch up on his journey below.

Hi Tom! Can you share a little about your early symptoms and diagnosis experience?

I think I was very lucky to have a knowledgeable general practitioner – my actual diagnosis only took three months to complete even though I had to see three separate neurologists. My early symptoms started in my right hand with weakness and the atrophy of the thumb muscle – I thought it was carpal tunnel syndrome.

How has your ALS progressed over the past few years?

Thankfully I have been in the category of a slow progressor:

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

Description:

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability)
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best

What sort of advocacy efforts have you been involved in since your diagnosis?

  • PatientsLikeMe (PLM) Member since January 2011.
  • Active with the ALS Association (raised over $80,000 to date) – my most current activity.
  • On 8/2/2011, FM 106.7 The Fan (Sports Junkies) hosted an ALS Awareness Day Interview.
  • March 2012: Featured Interview on PatientsLikeMe (PLM) –Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy.
  • April 24-25 2012 Visit to Capitol Hill with Former Neuraltus CEO (Andrew Gengos) – Summary: I think Andrew Gengos (CEO Neuraltus) and I made a good “team” – Both Industry and Patients “partnering” with a consistent message related to Expanded Access and Accelerated Approval for Rare and Life Threatening diseases such as ALS.
  • Raised over $30,000 for a collaboration between ALS Treat Us Now and the ALS Therapy Development Institute (ALSTDI) and rode the last 15 miles of the ALSTDI Tri-State Trek in July 2012.
  • Presentation made to the FDA CDER on 8/24/2012.

You’re a 3-star data donor on PatientsLikeMe – what do you find helpful about tracking your health on the site?

Because of this site, I think I have the most complete documentation of my disease progression in treatments than anyone in the health industry. It is a great tool and has been unbelievably helpful to me over the last four years. 

Finally, congratulations on your 33-year anniversary! As a father and husband, what’s one thing you’d like to share with the community about ALS and family relationships?

At the end of the day, given all the challenges those of us with ALS face – nothing is more important than your family relationships and the love you share.

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