13 posts from March, 2017

3 energy-saving tips for people with lupus

Posted March 31st, 2017 by

lupus fatigue tips

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.

Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):

  1. A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
  1. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.

lupus fatigue tips

“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.

  1. More scheduling pointers from the experts at the Lupus Foundation of America:  
    • Balance busy times with periods of rest throughout the day, if possible.
    • Prep meals in advance, whenever you have a bit more energy.
    • Plan ahead for big events like the holidays – shop for gifts throughout the year.
    • Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)

Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.

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Parkinson’s podcast: Member Gary talks music and movement with dancer Pamela Quinn

Posted March 30th, 2017 by

In a quest to learn about the benefits of music for people with Parkinson’s disease, we met Pamela Quinn, a professional dancer in New York City who was diagnosed with young-onset PD more than 20 years ago. These days, she teaches thriving dance classes in Brooklyn and Manhattan for people with Parkinson’s (check out her PD Movement Lab class here), and gives talks around the world – from Chicago to Japan – about dancing and moving with PD (catch one of Pam’s inspiring lectures here).

Turns out Team of Advisors member Gary (tupelo), who is living with PD, has known Pam for about three years (they met through their movement specialist, Rachel Saunders-Pullman, M.D.).

Gary and Pam recently sat down for a chat, friend to friend, and let us join in. This is just a snippet:

Pam: “I was in shock because Parkinson’s was not really in my world view at the time – I was a professional dancer, I was a young mother and that was the farthest thing from my thoughts.”

Gary: “So what did you do after finally accepting that you had this chronic progressive disease that would be with you for the rest of your life?”

Pam: “Well, I didn’t accept it…”

Hear the 15-minute podcast

Beyond sharing her reaction to her diagnosis, Pam offered lots of tips for taking elements of dance, breaking down movements and using music to keep on moving (in addition to using prescribed medication, she notes).

“Music is fantastic,” Pam says. “Music is definitely part of my medicinal arsenal. It eases my gait. It propels through space. It helps initiate movement. It has no side effects. It’s cheap. And when they banned it from the New York City Marathon because it gave runners a competitive edge, I knew I was on the right track.”

The PatientsLikeMe community has a lot to say about this topic, too – there are 850+ threads about music and 1,000 threads about dance in the Parkinson’s Disease forum.

Looking for more movement tips and tricks from Pam? She’ll be posting videos and practical pointers for people with PD on her new blog, PamelaQuinn.net.  

A note from Pam: The content of this post and podcast is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

 

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It’s Kidney Month: 44 famous people who’ve battled kidney disease

Posted March 28th, 2017 by

Can you name any celebs with kidney disease?

Roughly 14 percent of Americans have chronic kidney disease, and it claims more lives than breast or prostate cancer every year. But it’s not a condition you often hear about or see splashed on magazine covers.

March is National Kidney Month, so we explored some well-known people who’ve been affected by this “silent disease.”

Celebrities with kidney disease

All walks of life

As the Childhood Kidney Support Network notes in their list of 44 famous people who have battled kidney disease, it affects people of all ages, races and walks of life – even cowboys (Buffalo Bill) and royals (Prince Rainier III of Monaco). Here’s a sampling of stars on the list:

  • The Hollywood crowd – Directors Stephen Spielberg, Howard Hughes and Alfred Hitchcock; actresses Sarah Hyland (Modern Family), Sandra Dee, Marlene Dietrich and Veronica Lake; actors Gary Coleman (Diff’rent Strokes), George Lopez (comedian/talk show host), Dom DeLuise and Laurence Olivier; and TV chef Julia Child
  • Artists, writers and musicians – Mozart, Cole Porter, Robin Gibb, C.S. Lewis, Norman Mailer, Natalie Cole, Emily Dickinson, Barry White and Neil Simon
  • Athletes, military leaders and more – Douglas MacArthur (U.S. Army General), Jonah Lomu (rugby player of New Zealand), Jack Brabham (Australian race car driver), and Bobby Fischer (chess player)

Know the signs

Kidney disease is often referred to as a “silent disease” because it often has no symptoms in its early stages and can go undetected until it is very advanced. “Only 10 percent of people with chronic kidney disease know that they have it,” says Dr. Joseph Vassalotti, Chief Medical Officer at the National Kidney Foundation.

Because symptoms don’t always show up early on (or can be attributed to other health conditions), it’s important to know these possible signs, according to the National Kidney Foundation:

  • You’re more fatigued than usual and having trouble concentrating
  • You’re having trouble sleeping
  • You have dry, itchy skin
  • You feel the need to urinate more often
  • You see blood, excessive bubbles or foaminess in your urine
  • Your ankles and feet are swollen
  • You have a poor appetite
  • Your muscles are cramping

On PatientsLikeMe

More than 1,500 members have chronic kidney disease. Commonly reported symptoms include fatigue, pain, insomnia, and depressed or anxious mood.

Are you living with chronic kidney disease or another kidney condition? Track your condition and treatments and connect with others like you in the PatientsLikeMe Kidneys and Urinary forum.

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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Posted March 24th, 2017 by

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work.

What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here? 

A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people.

In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development.

How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient?

For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes and, in general, I was feeling a burning sensation in my esophagus on most days. It started to affect my concentration and my mood. On the plus side, I made some healthy improvements to my life – drinking a lot more water, exercising regularly and cutting down on one of my worst habits (eating late at night). But until I was prescribed Prilosec, it was definitely a frustrating challenge. At this point, the prescription has me feeling pretty much 100 percent, other than the fact that I’ve given up coffee for a strong breakfast tea every morning. I have a cup now and then but, all in all, coffee and my stomach do not get along.

I use PatientsLikeMe to track how I’m feeling and why – I try to leave comments along with my InstantMe. It helps me identify bad habits and external factors that exacerbate my condition. I also like to see how other patients with my condition are faring, what treatments are working, and, in general, it’s been eye opening to see how many other people have experienced the same things I have with GERD.

When was your mom diagnosed with fibromyalgia? Can you share how her diagnosis affected her and your family? 

My mother, Maria, was diagnosed with fibromyalgia, after several fits and starts, in 1997. For some time, we had no idea what was going on. Only after several second opinions, Fifth’s disease and Fibromyalgia were identified as potential culprits for her pain, inflammation, and total fatigue. It had a huge effect on our family as she was always the motor that kept us going. My father worked a lot but really wasn’t very active around the house with chores, cooking, homework and things like that. On top of that, my mother worked as his accountant full-time.

It shook us all for many reasons. I had never encountered a problem our healthcare system did not have some reasonable explanation for or plan to address, other than terminal illnesses. We’ve both taken strength from other people’s stories on PatientsLikeMe, like Team of Advisors member Craig’s inspiring post about fibromyalgia that led my mother to say, “That’s exactly what it feels like!”

How is your mom doing these days? 

My mother still struggles with fatigue and has given up some of her favorite things, like gardening, due to arthritis-like pain. She has to limit her driving time, which results in missing family events on occasion. Really, anytime we plan an event or trip together, it is generally constrained by managing her energy levels. We’re lucky to still be together as a family, but it is definitely something we have to always keep in mind with her. I would like to say that overall she’s doing fine and couldn’t be happier to spend time with my daughter – her granddaughter, Mariana – lately. She watches her two days a week, and I’m not sure it would be possible without PatientsLikeMe. I’m able to work from home on those days and give my mom a quick hand if she is in pain – just another reason we are so grateful to be part of the PatientsLikeMe family.

How does your and your mom’s experience shape your work here?

Typically, I am someone who takes great ideas from other PatientsLikeMe staffers and puts them into practice through software development. But I’d like to think my experience as a patient and son helps me view the website from that vantage point and make good suggestions, if I see anything we can improve.

And, of course, I couldn’t be happier to get up every morning and go to work somewhere that has a truly inspiring mission and has touched my family. It’s a real blessing!

What do you like to do for fun when you’re not at work? 

For the last six months, I’ve been focused on my stepson, Daniel, and his brand-new baby sister, Mariana. She never wants to stop – mostly demanding that I help her try to stand up and walk, walk, walk. Danny’s first language was Spanish, so we spend extra time reading and doing homework to catch up on some of his English skills while we reinforce his already great math skills. We also find plenty of time to play “Just Dance,” ride bicycles, go sledding and all the fun things. Personally, I really like to get outside and stay active – mountain biking, skiing, hiking. It’s a lifelong passion and it helps me stay in good health – something I know not to take for granted. In the evenings, I like to relax with a National Geographic or a good video game like “Tomb Raider.”

 

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Multiple myeloma community members form “forever friends” by taking it offline

Posted March 23rd, 2017 by

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

Read on to find out how they organized the meetup and what it’s like to catch up in person with friends you’ve made on PatientsLikeMe. Like Dennis suggests: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.”

What led you to organizing these in person meet-ups?

paulatsea: Over time I noted that there were a number of us that were within about 40 miles of each other, thought it would be fun to meet so tossed out the idea and the others liked it too so we made it happen!

Marcia_holman: It was an idea thrown out by Paul to start with. Paul, Dennis and I are regulars on the thread, we and a few others who are from out of state chat there and have all become good friends. Of our group I believe Paul has been on PatientsLIkeMe the longest. Anyway, Dennis and I thought Paul’s idea was great. We arranged the date, time and place and put it out for other members. Only the three of us with spouses and guests came out. This time when I heard Lee was going to be out here visiting, Lee and I have gotten to know each other on PatientsLikeMe, he had mentioned he would like to meet the others from our group. So I contacted Paul and Dennis and they were really excited to meet Lee from Kentucky, too. I chose the date and it worked for everyone (I’m having surgery on February 28th so my time was limited). Then I asked Paul to find us a place. His choice of Polly’s Pies worked really well. I was really hoping since we have had so many newcomers and many from So Cal that we would get a good response. I announced it on the home page and on the thread but no takers.

What’s it been like connecting with other PatientsLikeMe members in person?

Dapylil: It was wonderful! I am already a member of a multiple myeloma support group in Louisville, KY, but these friends have been around longer, and I already felt a stronger bond. We had been in this fight together. A bonus to meeting with these folk is that we share a common “language.” We could speak shorthand about what we had experienced. There was/is a built in understanding of highs and lows of this journey “through the valley of the shadows.” They understood my pain without having to explain it.

DennisIvan: It seems actually like instant connectivity. There are no awkward meeting moments like when you are meeting someone new. You feel the warmth of an old friend and begin talking like old friends from the get go. I experienced this feeling at both meetings when meeting these folks even for the first time.

Marcia_holman: It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!”

When you all catch up, what do you talk about?

Paulatsea: We talk about our “new normal”, some of the things we can do, mourn some of the losses of things we struggle or just can’t do anymore.

Marcia_holman: Everything. We talk about how we are currently doing and of course our treatments and our myeloma journeys, but we also talk about our life before multiple myeloma and we talk about our new normal and how it has changed us, good and bad! We still have dreams we want to fulfill and hope! I brought my granddaughter, who is 13 years old, and she said she had fun talking with everyone about school and the new core curriculum. Everyone included her in the group.

Dapylil: I was interested in their stories: “Our stories disclose in a general way what we were like, what happened, and what we are like now.” I wasn’t so much curious about treatment. My focus is what had changed about them mentally and spiritually.

Are the meet-ups just for people living in your area? Or have they come from other places to join in?

Dapylil: I attended this one while visiting in California. I’m from Kentucky. I joined the already established group in Louisville first to hear what others were doing medically for their condition. I’ve stayed in that group for the same reason that I wanted to meet my California friends – Tell me a story!

Paulatsea: I came about 30 miles, open invite to anyone in the group, if they live in the area or visiting the area, all are welcome.

DennisIvan: We welcome multiple myeloma patients and or caregivers from anywhere who are willing to join us. This week we welcomed Lee who came all the way to Southern California from Kentucky. It was a delight to have Lee with his South Carolina (birth state) charm and his wicked sense of humor. My wife and I drove down to Cerritos from our home in Santa Clarita – a trip of about 50 miles and one hour. Traffic in California is lighter on Sunday’s so it is a good meeting day.

If there are other communities that like this idea, what advice would you give them to organize something like this?

 paulatsea: We chose a family type restaurant with a wide variety of foods – meat, fish, salads, vegetarian, – near freeways, make it easy for people to get to and find it. We picked a date and time approximately a month in advance.

Marcia_holman: The hardest part is getting more people to come. I always suggest they bring someone with them. I thought this would make them feel more comfortable meeting people they have only corresponded with online. 

Is there anything else you’d like to share about these meet-ups?

Dapylil: I sincerely encourage not only meeting people through websites similar to PatientsLikeMe and especially PatientsLikeMe! If possible, form your own group. Be open to sharing your experience, strength and hope that you have gained in your journey. Barbara De Angelis wrote: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.” Come and find many dance partners.

DennisIvan: A disease like multiple myeloma makes it easy for a patient to become isolated through circumstances or perhaps their own choice. PatientsLikeMe helps patients seek out others through online contact. An in-person meeting carries it a step further and helps us step out of our inner turmoil to grab some rejuvenated socialization specifically targeted to our needs.

Marcia_holman: They really are a lot of fun. You form “forever” friends. You are very comfortable with each other. It’s like having known them all your life!

 

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March is Brain Injury Awareness Month. Let’s learn more, together.

Posted March 21st, 2017 by

Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA).

At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:

Brain injury awareness gender spread

Brain injury awareness age groups

 

PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI.

Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page.

If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in the community.

 

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“I thank my donor every day for this gift”: Member Laura shares her lung transplant story

Posted March 17th, 2017 by

Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us.

How are you feeling these days? 

I am feeling great. I’ve had a couple bumps in the road but nothing that the transplant team hasn’t seen before, and [they] handle it immediately. It was scary for me but the team is great in communicating that these [post-transplant] issues happen to some and not to worry. I like that communication because it sets my mind at ease.

How long had you been a candidate for a lung transplant? 

I was evaluated at Brigham and Women’s Hospital (BWH) in January of 2014 and accepted into their transplant program. At the time, I was classified as too healthy to be listed, however I was being watched and met with them every four to six months. In October 2016, BWH suggested I be re-presented and get listed on UNOS (the United Network for Organ Sharing waiting list) for a transplant. After finishing some additional testing, I was listed in Boston Region 1 on December 16, 2016. I also finished the evaluation process at New York Presbyterian Hospital/Columbia around the same time and about December 8, 2016, I was listed on their regional UNOS list for a transplant.

You shared in the forum about having a “dry run” in December 2016, when you were called in as a backup candidate for a transplant but the lungs went to another person. How did you feel when that first call fell through for you? 

As I said in the forum, my daughter and I went to NY Presbyterian with no expectations. While driving, we were calm and I think we both knew this would be a dry run. We didn’t even really call anyone to let them know we were heading there. It gave me comfort to know that the person who needed those lungs the most got them. Many times the lungs are not usable and these are now breathing in someone’s body, giving him or her the gift of life.

What was it like to get “THE CALL” again, leading up to your actual transplant? 

January 6 was a difficult day for me emotionally. We terminal patients have those days, accept them, then put on a happy face for our loved ones. My daughter made supper (not a usual thing – haha) and we were just about ready to sit down to eat. It was 5:30 p.m. My phone rang and without looking at it, we knew. My daughter got up and went upstairs to get ready as I was answering the phone.

I was a primary [candidate] for a left lung, and we knew in our hearts this was it. We headed to Boston immediately. I headed into surgery at 11 a.m. on January 7, 2017. While I was in surgery, my daughter received a call from NY Presbyterian saying they had a lung for me. That rarely happens, if ever. My journey was meant to begin on January 7 at BWH. That was the day there was a 25-car pile-up on the way to New York. I would have never made it in time [for the transplant there].

Can you share some more of your transplant surgery experience with us?

I know that when I woke up after surgery I did not have any pain – I still have not had any pain. They put me on .5 liter of oxygen after, and when I woke in ICU, I took it off. I was breathing on my own from the beginning. My surgery finished at 5 p.m. (ish) on January 7. I did everything they told me to and was released to go home on January 13. Six days after a left lung transplant. This was meant to be.

 

What has been the most difficult or surprising part of your recovery? 

I had a couple of bumps in the road but those were nothing. I need to stress that the most difficult part is the emotions for me and for my caregiver. We don’t stress the caregiver enough. As my daughter said, the prednisone has turned her 66-year-old mother into an adolescent child at times. That is difficult for any caregiver to handle. It’s a 24-hour job for them. We just need to recover, but we can’t do it without them. I’m blessed to have her and she says we will get through this because the alternative is not an option.

You’ve referred to transplant day as “Miracle Day.” What would you say to your organ donor? And to people considering organ donation? 

I wake in the morning and thank my donor and the donor family every day for this gift. I never thought about organ donation much until a friend of mine needed a kidney and then I needed a lung. Doctors perform miracles every day not only by transplanting an organ but using the right combination of drugs to keep our body from rejecting it. Giving the gift of life to someone else is the most selfless act someone can make, and those of us who need it will forever be grateful. I plan to honor that donor by doing my part in staying alive.

How will you use PatientsLikeMe now that you’ve had a lung transplant? 

I’ve been pretty vocal [asking] about the post-transplant experience when a few of the PatientsLikeMe folks had their transplant. It’s the only piece that we don’t seem to share. I get it – I’m about two months post-transplant and I’m trying to recover. I plan to keep giving back. I will begin posting/blogging again about my experience so others also will know that whatever is happening post-transplant, some others have the same issues. Sharing our experiences and our data is important, and it makes us feel less alone. People like John_R, who I talk to – he says he has had the same experience or experienced something else. It helps those of us who follow to get through it.

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The record on research: Catching up with TOA member Cris

Posted March 15th, 2017 by

Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials is so important.

Despite her shy personality, Cris got involved with patient advocacy with the encouragement of her ALS specialist, Dr. Richard Bedlack. Determined to overcome her shyness, Cris found motivation and purpose in advocating for future patients, family and friends and the belief that access to all trials should be easily available for a patient and not complicated to locate. In May, she attended the ALS Advocacy Day in Washington D.C., where she represented pALS from North Carolina and shared her own ALS journey with her state’s senators.

Cris believes that clinical trials are critical for survival, present and future, but physicians don’t know about, or take the time to discuss current trials with patients unless their facility is active in research. There are very few active ALS clinical trials and because of stringent trial protocols, many patients are not accepted due to progression of the disease. She believes that since ALS is fatal, drug companies are worried patients might succumb before end of trial.

Since her diagnosis in 2014, Cris has participated in several clinical trials:

  • Started a new trial but ultimately failed in the qualification process.
  • Started a “blind” (placebo vs drug dosage) – but couldn’t tolerate the side effects of the drug dosage and was advised not to continue.
  • Participated in a monitored daily physical activity study.
  • Currently enrolled in the year-long Lunasin Virtual Trial (completing at the end of March 2017). This trial is in partnership with Duke and PatientsLikeMe and all monthly input and results can be viewed by PatientsLikeMe patients.
  • Currently participating in a 6-month study through the Precision Medicine Program (ALSTDI), to compare movement data collected using accelerometers and overlay those data with an individual’s self-reported ALSFRS-R scores. Involves keeping track of progression with activity monitors for six days.

What is the goal of the Duke Lunasin Virtual Trial?

  • The primary hypothesis is that a supplement regimen containing Lunasin can decrease the rate of ALSFRS-S progression by 50% relative to matched historic controls.
  • While it might not be the most delicious drink, Cris makes it work by mixing the Lunasin with juices or smoothies. Cris, like many of her fellow pALS, is willing to go to any length for a treatment or cure.
  • Want to know more about the Duke trial? Check out what Dr. Bedlack had to say.

New to the ALS community? Cris has some words of advice:

Know that it’s okay and expected, when first diagnosed with this disease, to have the wide spectrum of emotions from sadness, madness, confusion, “why me” and fear (to name a few). I highly recommend putting aside all the negativity that goes with this journey as quickly as possible. Regroup, focus and be creative on establishing a new way of life to cope with various stages of disability. Contact your local ALS chapter, national or worldwide or other pALS – they’re great resources.”

On PatientsLikeMe:

Cris shared about Lunasin and being a part of the Duke trial. With 151 PatientsLikeMe members reporting that they’ve used Lunasin to treat their ALS, 140 treatment evaluations and almost 45,000 forum posts, Lunasin is a popular topic in the ALS community.

Want to learn more? Head to the forum to check what people are saying about Lunasin.

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Sleep and Daylight Saving: 3 ways to spring forward with confidence

Posted March 10th, 2017 by

Daylight Savings adjustment

Daylight Saving Time is here again. This Sunday, March 12th, clocks will move forward one hour from 2:00am to 3:00am. While the hour change may seem small, it can have a big impact on sleep and health.

Want to hit snooze? You might feel sleepier than usual Monday morning since the average person sleeps 40 minutes less the night following spring Daylight Saving Time than usual. From taking medication at the same time every day to finding the energy for an afternoon walk, many people rely on daily routines to manage their condition. For some, losing an hour of sleep can throw off more than just a sleep cycle.

Here are a few tips from the National Sleep Foundation to prepare yourself so you can stay on track and spring forward with confidence:

  1. Make sure you’re caught up on sleep. If you’re already sleep-deprived when Daylight Saving Time comes, it’s going to hit you harder than if you’ve been regularly getting seven to nine hours a night. So, in the week leading up to the time change, pay special attention to clocking the right amount of shut eye.
  2. Use light to your advantage. Light affects your sleep cycle. So, whenever possible, head outside early in the mornings and soak in some sunlight. At night, make sure you dim your lights when you want to signal to your body that it’s time to go to sleep and avoid staring at computer screens late in the day.
  3. Rethink your evening activities. Tweaks to your nighttime routine can help you drift off more easily—something that’s tough to do when you spring forward. A few important ones: Limit caffeine and alcohol intake in the hours leading up to bedtime and don’t schedule a nighttime workout.

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The record on research: A chat with Duke’s Dr. Rick Bedlack

Posted March 7th, 2017 by

“This is the fastest enrolling trial in ALS history.”

 

A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study. We recently spoke with him about his background with ALS and the ins and outs of the study.

He saw his first patient with ALS in the late 1990s during his residency at Duke.  He says, “I remember being amazed by the person’s history and neurological exam findings, intrigued by the mysteries of why this was happening, and horrified when I heard my attending physician say ‘you have 2-3 years. There is nothing we can do. Go and get your affairs in order.’” Driving home that day, he decided to build a program for people with ALS that would give them options for living the best possible life with the disease and for participating in research that would stimulate some hope.

Fast forward to March of 2016 when the Lunasin study started. What’s Lunasin and why does it matter to the ALS community? Lunasin is a peptide first extracted from soybeans, which has several potential mechanisms by which it could help a person with ALS. “I first heard about it in a video that my ALSUntangled team was asked to review. In this, a man named Mike McDuff reported that he had ALS, started taking a Lunasin-containing supplement regimen, and unexpectedly experienced dramatic improvements in his speech and swallowing,” says Rick.

He found Mike McDuff and validated his ALS reversal. “One possible explanation for his ALS reversal is that the Lunasin regimen really works,” he says. “Other possible explanations are that Mr. McDuff has an undiagnosed ALS-mimic syndrome, or that his body is somehow naturally ‘resistant’ to this disease. I am testing all these hypotheses in my ALS Reversals program.”

The Lunasin study is a clinical trial of the exact same Lunasin-containing regimen that Mike McDuff took when he experienced his ALS reversal. Because they’re looking for the largest signal ever in an ALS trial, they’ve been able to incorporate some unusual design features into this trial:

  • The inclusion criteria are very broad. There are no cutoffs related to disease duration or breathing function.
  • There are no placebos. All 50 people in the trial will get the real treatments.
  • There are very few in-person visits. Most of the visits are virtual, with participants logging into PatientsLikeMe to enter measurements we teach them to make.
  • The results of the study are available in real time. Anyone can go onto PatientsLikeMe and type in “Lunasin Duke Virtual Trial” and see what participants are saying is happening to them.

“I appreciate the frustration many people with ALS have expressed about the way most of our trials are designed and I wanted to do something different to help them,” says Dr. Bedlack. “It took longer than I expected to get the study open. Constipation is much more common on the Lunasin regimen than I expected, and drop outs have been higher than I hoped thus far.”

The IRB-approved protocol is published so that anyone who wants to try the Lunasin regimen outside the trial can do so using the exact same products and doses, and even record their same outcome measures on PatientsLikeMe.

So, what’s the end game of this study? Dr. Bedlack comments, “I hope to find a way to reverse ALS or at least slow it down. If that does not happen, then I hope I can at least show that this unusual design enrolls more quickly and retains study participants better than a more traditional ALS trial. This is the fastest enrolling trial in ALS history.”

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Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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Lady Gaga reveals her struggle with PTSD

Posted March 3rd, 2017 by
Lady Gaga PTSD

LADY GAGA / TWITTER

Musician Lady Gaga recently revealed in an open letter that she is living with PTSD. In the letter, posted to the Born This Way Foundation website, she discussed her struggle with the condition since being sexually assaulted as a teenager: “I have wrestled for some time about when, how and if I should reveal my diagnosis of Post Traumatic Stress Disorder (PTSD). After five years of searching for the answers to my chronic pain and the change I have felt in my brain, I am finally well enough to tell you.”

In the letter, Gaga touched on living with and managing the symptoms of the condition, and that she experiences something called dissociation, which can present itself in a range of experiences – she opened up about how it impacted her: “…my mind doesn’t want to relive the pain so ‘I look off and I stare’ in a glazed over state… My body is in one place and my mind in another. It’s like the panic accelerator in my mind gets stuck and I am paralyzed with fear,” she wrote. “When this happens I can’t talk. When this happens repeatedly, it makes me have a common PTSD reaction which is that I feel depressed and unable to function like I used to.” Gaga also revealed she tends to experience somatization, which means she experiences physical pain related to her mental state.

Along with fighting against the stigma associated with mental illness, Lady Gaga also hopes to raise awareness for all people living with PTSD, including those outside of the military: “Traditionally, many associate PTSD as a condition faced by brave men and women that serve countries all over the world,” she wrote. “While this is true, I seek to raise awareness that this mental illness affects all kinds of people, including our youth. I pledge not only to help our youth not feel ashamed of their own conditions, but also to lend support to those servicemen and women who suffer from PTSD. No one’s invisible pain should go unnoticed.”

The news made headlines globally and the musician pledged to continue to share her experiences and manage the condition as best she can. “I will never give up on my dreams of art and music. I am continuing to learn how to transcend this because I know I can. If you relate to what I am sharing, please know that you can too.”

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Loud and clear: The patient voice on the ACA

Posted March 2nd, 2017 by

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up.

A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective:

“Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.”

  • Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis

 

ACA patient poll by PatientsLikeMe

2,197 PatientsLikeMe members weighed in on the ACA.

 

“I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made ‘too much’ on unemployment which wasn’t much. This doesn’t take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can’t afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don’t have any savings; I can’t work. I am borrowing money from credit cards just to make ends meet.

And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others.”

  • Shawn, Lakewood, CO, living with severe traumatic brain injury

Thanks again to all who participated and helped elevate the patient point of view. Let’s keep the dialogue going, together.

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