Overcoming Multiple Sclerosis: Member Casper opens up about his MS journey

Posted September 19th, 2016 by

We recently got to know Casper (casper80), a member of the MS community who’s been living with his condition for nearly a decade. Along with tracking his health on PatientsLikeMe, Casper follows the “Overcoming Multiple Sclerosis Recovery Program” (OMS), founded by Professor George Jelinek of the University of Melbourne over 15 years ago.

The program focuses on lifestyle changes — things like diet, exercise, and meditation — that can help MS patients feel better and healthier in their day-to-day lives. We wanted to get Casper’s thoughts on what OMS is all about, and whether it’s helped him manage his health. Below, see what he has to say about his journey with MS (and OMS) and his experience on PatientsLikeMe: “It ensures I do not feel alone.”  

Tell us a little bit about yourself. What was life like before your diagnosis with MS? 

Life was fun, I had lots of friends and was enjoying life, no worries! I mostly enjoyed walking in the countryside, cooking and eating with friends. I live in the UK, and my family are all in Sweden (I am half English, half Swedish).

We hear from many PatientsLikeMe members living with MS that finding a diagnosis can sometimes be challenging. What was your MS diagnosis experience like? 

In early 2006, a random tingling in my legs appeared as I was waiting to cross a road, and did not go away. Occasionally, I would fall over when walking, or accidentally go to the toilet in my pants. I was very confused about what was happening to me. After a few months, my NHS doctor referred me to a consultant who said it could be the first sign of MS. He said I could get tested, but if it was MS there is no treatment. So I chose to not be tested.

Since MS, how has life changed? How have you, as some members say, adjusted to your “new normal”?  

It has taken some time, but I have adjusted to my “new normal.” My wife, family and friends also adjust when I am with them. I make sure I plan any activities in advance, pack a change of clothes just in case, go to the loo before I go out, plan routes, pack my own food. I have occasional challenges, but I am now happy again.

On your PatientsLikeMe profile, you mention that for the past three years you’ve been following a program called “Overcoming Multiple Sclerosis”(OMS), founded by Professor George Jelinek, Head of the Neuroepidemiology Unit (NEU) within the Melbourne School of Population and Global Health at The University of Melbourne. How does this program work? How has it changed the way you manage your MS? 

The OMS program has three core parts. First, I adjusted my diet to reduce my daily saturated fat consumption to 10g or less. It’s a vegan, whole food diet plus fish and Vitamin D.  I also exercise for half an hour, five times a week. And finally, I meditate for 30 minutes every day. I started slowly with a few minutes a day, gradually building up to 30. Now I generally do my 30 minutes when I need to rest, or during my train commute to work. Mindful meditation now goes quickly, it resets my body and I feel great after!

What can you do now that you couldn’t do before? What are some challenges that remain?

Mental – I can smile honestly. A few years ago I was scared and confused about what was happening …my slow but steady loss of ability and independence. I lost hope and found myself in a dark place. Nowadays, since following OMS, I can enjoy life, be optimistic and look forward to the future. I can make friends and family happy. People often tell me they are inspired by my positivity.

Challenges – occasionally I am still overwhelmed by MS and how it can affect everything the body and brain does, but I have found this usually means I have not had enough sleep!

Physical – I can walk further, more strongly. From 2006-2014 my walking slowly deteriorated until I lost confidence, was constantly using a walking stick and avoided going out. OMS gave me the confidence to exercise, build strength and try walking without my walking stick. Astonishingly, it eventually worked! I still use my walking stick sometimes, and if I have a day of exceptional long walking or physical effort I may use a wheelchair the next day (but these are very rare occasions). On a good day I will fold the walking stick and put in my rucksack. On a really good day I will leave home without my walking stick at all!

Challenges – I definitely still have physical limitations. I am sometimes frustrated that I struggle to carry a shopping bag and cannot run, but I keep practicing … it will come one day!

Toilet – I have more control and confidence than I have had for years. That is in part from experience and better management, but fundamentally things work better than they used to.

Challenges – Accidents can happen if I have not taken precautions, but this is very rare.

Neuropathic pain – 18 months ago I would wake up every night, literally screaming from pain in my left arm. My neuro prescribed Amitriptylene , which stopped this neuropathic pain. OMS has given me the confidence to carefully reduce the dose. I have not taken any for 13 months now and have no pain.

Brain fog – My brain is generally clear, and I have more confidence in it.

Challenges – Remembering to take things slow.

Diet – I am enjoying varied, delicious meals every day. My ability to taste is much better since following OMS…I can even recognize the difference between rice cakes!

Challenges – going to a restaurant used to be a challenge, but I have found restaurant staff and chefs are very happy to help if I ask them to make changes to the meals to be OMS-friendly.

Friends – I have made loads of friends who have MS through OMS. We are all helping each other. In a funny way, since finding OMS, I am actually happy because of MS.

Challenges – Time!

It looks like you’ve reported taking Baclofen on your PatientsLikeMe profile. How has the combination of taking a prescribed treatment along with following the Overcoming MS program holistically impacted your health outcomes?

I have had Secondary Progressive MS (SPMS) since the beginning of my MS nearly 10 years ago. There is no medicine for SPMS, just Baclofen to reduce muscle spasms.

My neuro told me to take Baclofen as/when I need, so I don’t have a set amount. I am quite relaxed with it but try to take as little as possible — these days I typically take 10-40mg/day. I went through a phase of not wanting to take Baclofen, but that simply resulted in me shaking more, so it was visibly apparent that I need it!

18 months ago I took Amitriptylene to reduce neuropathic pain, which worked and it was amazing, but I reduced that and eventually stopped completely soon after I went on an OMS retreat.

OMS has helped me understand that medicine is fantastic when it is needed, but you don’t necessarily have to use the medicine forever. (Of course discuss with your doctor).

OMS has given me a way to help myself, without waiting for SPMS medicine*. So whilst I am ready to accept medicine, I do not rely on it. Baclofen reduces my spasms — an important, but limited function. OMS diet, exercise and meditation makes me feel healthy, proactive and positive and enjoy life. Another great thing about OMS is that it also gives my family and friends hope, because they can see me being healthy and happy. I feel like I can overcome the challenges of MS!

*I am actually also on the MS-SMART trial, taking a small dose of medicine/placebo.

Other than this program, what else do you do to manage your MS? How has regularly tracking your symptoms on PatientsLikeMe helped? 

Tracking my symptoms on PatientsLikeMe has been great to see how I have improved over time. It was great when I showed my wife my PatientsLikeMe graphs and she saw my entries were honest (she remembers the bad days I had in the past, so she knew I was completing it truthfully). She was really happy to see my improvement.

The PatientsLikeMe network is fantastic, and I have been lucky to receive some good advice from others in the network. Occasionally I am even able to help with someone else’s question. It feels so nice when someone reads my post and ‘likes’ them. MS can be lonely, but the PatientsLikeMe network connects me with others who know MS from the inside — it ensures I do not feel alone.

What’s your best piece of advice for other MS patients? 

Have hope. Follow OMS —it is not an instant fix but the worst that can happen from OMS is that you eat a healthy diet and make friends!

 

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Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

Posted September 15th, 2016 by

It’s been quite a year for the 20152016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships.

Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care.

The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives.

As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:

 

 

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“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

Posted September 8th, 2016 by

Iris posing on her motorcycle

September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Here’s what else she had to say…  

Tell us a little about yourself. What are your hobbies and passions?  

I’m an outgoing young adult who enjoys motorcycles! Since my diagnosis everything about me changed. My hobbies, my way of thinking, how I view life. One thing that has not changed is my passion for motorcycles. When I gain my strength back and summer comes back around that will be one of the main things I’ll be doing! I was a very selfish and materialistic person before my journey. Now that I have endured a long eight months of treatments, my hobbies and passions have changed. I enjoy reading about others who are going through a tough time and offering an ear or hand to help. I want to share my story to help others and let them know they are not alone! I want to raise money and participate in walks for cancers, not just ovarian but all types of cancers. I started crocheting as a therapeutic way to get through my transplants which helped me so much. Spending time with my family was always and still is a must.  

What was your diagnosis experience like?  

My journey began in July 2015 when my gynecologist found a mass on my ovary. I had my first surgery due to this immature teratoma in August, where I lost my right ovary and fallopian tube. Then I received the call that they found cancer cells in this teratoma, to which I should follow up with chemotherapy. I was devastated I couldn’t believe the message, I just remember crying and wondering why me. I did not follow up with chemotherapy, due to the fact that I was feeling good after surgery and had high hopes that I would be fine.

As the months passed, I began to feel pain in my lower back and thought nothing of it. I even mentioned it to my oncologist who said it was probably nothing, so I continued with my life. That was back in October. By January the pain had become so severe that on Friday, January 15, I left work early and went to the emergency room. There I was admitted and told my cancer was back with an aggression so intense I would have to start chemotherapy that Sunday.

How has life changed for you since your cancer?  

My whole life stopped along with my heart! I couldn’t believe it but I kept that smile and high FAITH and hope on! So began my journey as a cancer patient. I was told I would have to go through four rounds of very intense chemotherapy known as BEP. After that I may need to follow up with surgery.

It’s now been seven months and I’m still in the life of a cancer patient. I underwent two more life changing surgeries. On top of the surgeries, they wanted me to do two stem cell transplants. The second surgery I had to go through was the most difficult one for me. I didn’t even want to go through with it. I was ready to give up and just go somewhere beautiful and live my life out. Then I realized my time on this earth is not done, I have so much to do and so many people to help! So I did the surgery. They did a full hysterectomy, leaving me with a huge scar on my abdomen. I was even told that I may have needed a permanent colostomy, which when I woke up I did not! The moment I was being told this was after I had endured the four months of chemotherapy so I was mad. My emotions could not be explained at that moment. It was the first time I cried in front of anyone about my cancer. 

Then the next surgery I had to do was a removal of a mass in my chest. Chemotherapy killed a lot of the tumors that went from my pelvis up to my chest but left me with two. After having my last surgery, I was super sad! Knowing that I could not have a baby made things very difficult for a woman my age. Now I had to deal with them cracking my chest cavity open and leaving another scar. To get past that and prepare my mind for this, I would tell myself I’m going to look like the corpse’s bride. It was my way of coping with a new scar. So two weeks later we did that surgery. The night before the surgeon called me and told me they were going in through the side, which made me very happy! But with one little defect, one of my vocal nerves would have to be sacrifice, due to the tumor being too incased around it! I thought to myself oh of course. I got through both my surgeries just fine with a new voice I call Barbie. 

 I’ve become a super grateful person and an all-around different gal.

Iris shares her cancer journey on Snapchat

September is Ovarian Cancer Awareness Month. How do you share about your condition, and what have you learned in your journey that you think people should know?  

I will be participating in the 5K Ovarian Cancer walk Sept. 11, now that I have completed my treatment plan. I have shared some of my journey on Instagram but honestly, I shared a lot more on Snapchat to update my family and close friends. I have always been a strong willed person so for people to see me in such a weak stage bugged me. But since this journey I have broken out of that shell. I have taken many pictures since January until now, I even did videos. Now that I am at the end of this treatment plan I want to help others and let them know they are not alone! I have been working with doctors, an art therapist, nurses and anyone I can connect with to get my story out there. I want to begin to speak at events and sponsor walks. I will also be connecting with young adults’ cancer society.

In my journey I have learned many things, about myself and life. One thing that has stuck with me is how to be grateful. I’ve learned to feel for others and understand that everyone is different. Not everyone can take a situation and learn and grow from it. I want people to know that even though they may be going through a hard time in their life, the sunshine does break through the clouds. That they truly are not alone in their suffering. That there are people out there who can feel for them. Always educate yourself about what’s around you to help yourself. Having a POSITIVE mindset, I believe, makes a big difference. Staying positive through everything is what has also helped me a lot.

Since joining in May, you’re pretty active on PatientsLikeMe – how has it been for you to track your health and connect with others on the site?  

Although I have just recently joined this year, connecting with others has been a pretty joyful situation. Being able to vent about how I feel and ask other patients for advice has been amazing. Tracking my health on PatientsLikeMe keeps me on track with what to ask doctors and look back at how bad some of it was. This is the only website I use to track and vent about my cancer. It’s easy to use and it was located on my Patient Gateway.

How has dealing with cancer as a young adult been?

Dealing with this cancer at just 28 has been one of the most difficult things put in my path. I had just landed the job of my career, as a Real Estate Paralegal. In an office were we all get along and everything felt just right. I was living by myself and getting the grasp of being a young adult on her own. I had plans to travel and plans for family birthdays that couldn’t be done. Dealing with my mother having sarcoidosis was another thing that ran through my mind.

I couldn’t be sick not now, not at this time of my life. I couldn’t vent to anyone about it because I didn’t want to stress anyone out. I was the healthiest, strongest person in my family — to be sick with cancer was devastating. I couldn’t put it in words, the way I felt. Finding people to comprehend what I was going through was tough. Going to appointments and never seeing people in my age group made it even worse. I felt like the only young adult whose life had changed. Seeing everyone continuing to live their lives made me feel even worse. I feel like there isn’t that much support for young adults. I also feel like a lot of these young adults don’t want to speak about what they have been through. I can completely understand why. It’s tough, I never wanted to be looked at differently or anyone to feel bad for me. So all I can say is that it’s tough, but I have learned and grown from this and now I want to help others.

 

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The community speaks out for Pulmonary Fibrosis Awareness Month

Posted September 1st, 2016 by

How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up.

In a recent forum thread, members chimed in with the one thing they think people should know about what it’s like to live with PF. Here’s a snapshot of what they had to say:

 

“…how hard it is to deal with the fact that you can’t do things you used to do and that even things we typically take for granted like showering are very difficult as the condition worsens.”

— PatientsLikeMe member living with PF

 

“Don’t settle, we have options, find a doctor that specializes in interstitial lung diseases which pulmonary fibrosis is part of. Let them decide with your help as a patient what is best for YOU. We are always so quick to put a pill in our mouths and hope it works. With this disease that isn’t necessarily the answer. Live with IPF/PF and advocate for your health.”

— PatientsLikeMe member living with PF

 

“I have lived with pulmonary fibrosis since i was diagnosed 10 years ago but i am certain i had the symptoms many years earlier. Since my diagnosis, which the medics tell me is idiopathic, i have been on the roller coaster that many patients will be only too familiar with. Nobody knows the cause. Nobody knows how to treat it. And nobody knows a cure. And until there is a significant increase in research funding nobody ever will.”

— PatientsLikeMe member living with PF

 

You can see the rest of the responses and add your own experience here. And be sure to check out the Pulmonary Fibrosis Foundation’s awareness month toolkit to find out how to get involved on social media and beyond.

 

 

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Paul Wicks weighs in on a new, patient-conceived project

Posted August 22nd, 2016 by

Partnering with patients is at the very core of what we do, but a new collaboration with longtime ALS member Steve Saling (SmoothS) is giving that a new spin — it was Steve’s idea and he’s been driving the project from day one.

Since his diagnosis in 2006, Steve has made it his mission to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., to multiple residences across the country that offer pALS independent living alongside 24-hour care.

Steve sat down with us last week to share about his latest project: producing a series of educational short videos to help caregiving and medical staff better understand the unique care needs of pALS.

But what does this patient-conceived project mean for research? We caught up with our VP of Innovation, Paul Wicks, PhD., to chat more about this project from a research standpoint. Here’s what he had to say:

Working with members for research is in PatientsLikeMe’s DNA, but this collaboration with longtime ALS member Steve Saling (SmoothS) takes it to another level — the project was conceived and driven by Steve. What do you think about this unique partnership? What makes it different than other projects, and what are your expectations? 

There is certainly a lot of buzz out there about being “patient centered” these days – there is a risk that it’s tokenism rather than truly empowering – which means giving up some degree of control to others. In our case we’ve offered Steve access to powerful survey tools and our highly engaged population so he can develop his research about the experiences of other patients like him to help shape the services he designs. That’s really the core of what we do here, bringing the patient voice to decision makers in healthcare, and the reason this is so powerful is that as an architect, as an advocate, as a leader in the space, we’re helping Steve to make better decisions about the unmet needs of his community. My hope is that by giving people an anonymous survey they can complete at their leisure from home or with the use of assistive technology that we might hear from people with ALS who don’t normally have a voice.

In its early stages, the survey was more geared towards pALS and cALS receiving and giving institutional care. Can you talk about the evolution of the project with Steve to include those not in a care setting like that, too? 

We’ve been following Steve’s pioneering work in developing his ALS Residence Initiative for a long time, in fact I’ve had the pleasure of meeting him for a beer a couple of times and I even mentioned it in a TEDx talk as far back as 2010. As a researcher with 13 years experience in ALS I know that while residential care is the right fit for some people with ALS, others don’t have that option or couldn’t imagine being anywhere other than their homes. We also recognized that people have a mix of caregivers, both informal (e.g. spouses, children) and professional (e.g. home help, nurses) and that many patients have a blend of care from different sources throughout their journey. We also wanted to broaden the survey as much as possible so that we could hear from as many people as possible.

One of the goals is to learn from members to get more background context for a series of educational caregiver videos that Steve is producing and PatientsLikeMe is also sponsoring. What else do we hope to learn? 

When you or a loved one is diagnosed with ALS, you get a lot of educational material about the disease. It’s full of statistics and medical jargon about neurons and genetics, but you don’t get much support about how to live with it, how to cope. That could be something as simple as little tips for coping with weakness to something as complex as how to choose the right wheelchair or how to safely transfer with a hoist. Neurologists and experts and professionals can advise and consult, but in most cases they haven’t been there day after day to assist with the basics of daily life that become so hard with ALS, so I’m hoping that with our help Steve can build a permanent resource that will be a great “how to” guide for practical (and sometimes even awkward or embarrassing) topics that people encounter every day.

Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS? 

Fear of the unknown is a big one – although we’re seeing increasing awareness about ALS thanks to the Ice Bucket Challenge and movies likeThe Theory of Everything, most people don’t know what ALS is going to involve for them when their loved one is first diagnosed. Many people will want to tiptoe gently in the shallow end of knowing about it rather than diving in at the deep end – it can be hard enough coping with the issues in front of you without having to worry about problems that may or may not arise further down the line. Unlike something like cancer we also lack treatments in ALS, so it can feel like you’re just waiting for the next symptom rather than actively fighting it with drugs or surgery. Perhaps this is just bias, but ALS also tends to affect some of the strongest and most courageous people I’ve known and it can be hard for them to accept that they need help from others – they’ve often been successful professionals or highly active people and so admitting that they need help to walk or to get dressed doesn’t always come naturally to them.

Is anyone else doing research projects like this one that you know of?  

Over the years I’ve seen a little bit of relatively small-scale qualitative research like this published in the main ALS Journal usually from nurses, physical therapists, or occupational therapists, but I’m pretty confident this is the first conducted by a patient!

 

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Steve Saling’s patient-conceived ALS project

Posted August 15th, 2016 by

Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the country that offer pALS independent living alongside 24-hour care.

His latest project is producing a series of educational short videos to help caregiving and medical staff in nursing homes and other health institutions better understand the unique care needs of pALS. But before he can create these videos, he’s asking other PatientsLikeMe pALS to help him get started by sharing care experiences in an upcoming survey.

We caught up with Steve recently to chat more about this project. Here’s what he had to say:

You’ve teamed up with us to conduct this survey as part of a larger project you’re working on to create a series of short, educational videos for caregivers of pALS in institutional settings. Can you tell us what inspired you to do this? 

I want to make these videos because it is my nightmare to go to the hospital or live in a traditional nursing home and be treated like a product to be taken care of and kept alive instead of living a life. I have a handful of friends, including Patrick O’Brien and Ron Miller, who have survived institutional living. Their stories were horrible but weren’t about mean or cruel caregivers as much as about ignorant caregivers. I think everyone should be able to live in an ALS Residence but, recognizing that that isn’t going to happen for most pALS in the short term, I want to provide a quick easy way to orient and educate well-meaning staff so that taking care of a pALS, who may not be able to speak or breathe, is less scary. If there is fear of the unknown, let’s remove the unknown.

Caregiver needs are as wide-ranging as the number of people living with a condition, but what do you think is unique about the needs of caregivers of pALS? 

This is very true and these videos will not attempt to be very specific in detailing care needs. But I believe there are some universal truths that will apply to most pALS like non-verbal communication, range of motion, and emotional lability. There should also be a basic understanding of what ALS is and what ALS is not. The Ice Bucket Challenge made everyone aware that ALS is a wretched disease but very little understanding of what ALS is. Institutional caregivers need to know that pALS minds remain sharp and our senses undulled. Like a PatientsLikeMe button of mine says, “ALS has stolen my voice, NOT my mind.”

Similarly, why do you think there’s more research needed here and a need for educational videos?

I think a lot of caregivers are intimidated by the unknown and there is a lot unknown about ALS in the long term care industry. If successful, this video series will begin to fill that gap.

What can you tell us about the series of videos? What is your vision for these? 

I hope the videos become a valuable resource for pALS living in or considering moving to a nursing home or chronic hospital. Even someone going to the hospital for a multi-day stay should benefit. I want them to be what pALS would tell the staff if they could speak themselves. The intent is to create a series of six, 5-6 minute videos that would each cover a different aspect of providing excellent care for pALS. There would be a video for understanding ALS, non-verbal communication, range of motion, emotional lability, patience and compassion, and maybe even one for being a good patient. If successful and well received, this could be the beginning of an ongoing series.

What would you like to take away from this survey? What kind of information to you expect to get? And why is this important for your larger project?

I hope to get a big response so we know that the problem is real. I am counting on friends and family of institutionalized pALS to speak in their behalf if their loved one doesn’t have regular access to the internet. Right now, the topics are based on my fears and a small core of brainstormers. I would like to greatly expand that group to determine what the real challenges are that pALS face. I would even like to solicit video questions that may be in the final video.

After the survey, what are the next steps for this project? And will you be asking the community for any further insight?

I would like to create a focus group out of the willing poll takers. This should be a community project. We will work with a professional filmmaker to storyboard each of the videos along with identifying a recognized expert to address the issue at hand. The filming and editing will take place and there will be a grand release, hopefully with much fanfare and putting PLM in the spotlight for making it happen.

Is there anything you’d like to say to your pALS on PatientsLikeMe? 

Kick ALS’ ass every day. Live long and prosper. Life is good.

 

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The Magic Pill: A new 21-day podcast challenge

Posted August 12th, 2016 by

Exercise — do you think of it as a chore, or love the feeling? Our partners over at WBUR are launching a new podcast to inspire people to move more by changing the way we think about it. “A daily dose of get-up-and-go” is the mantra of the The Magic Pill, a 21-day challenge that kicks off on September 1.

Co-hosted by Eddie Phillips, the director of the Institute of Lifestyle Medicine at Harvard Medical School, the podcast is all about shifting our mindsets when comes to exercise and getting active. It’s not about telling you what you should or shouldn’t do — instead, the goal is to inspire listeners to get excited about moving more and to do what you can.

Each day, you can tune in to hear about the science behind exercising, helpful tips, and stories from both athletes and people who’ve never run a mile. Check out the pilot episode for a preview!

Before the challenge starts, head over to the forum and tell us how you feel about getting active: Do you love it? Dread it? And if you do it, what motivates you and how do you work it into your lifestyle?

 

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Patients as Partners: Christel on “finding your tribe”

Posted August 4th, 2016 by

Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering the “life-changing benefits of partnering with peers.”

Whether you are newly diagnosed or a veteran in your health condition, there are always opportunities to learn, share, and create a group of trusted peers who become your tribe. Despite a diagnosis of type 1 diabetes over 30 years ago, it wasn’t until I recently “found” my tribe that I truly understood the life-changing positive benefits of partnering with peers — those who travel along a similar healthcare journey. How did I find my tribe? I created it, using many of the Partnership Principles.

Know Your Needs

In a quest to better understand diabetes and how to manage it, I attended conferences and meetings where experts would stand up and discuss research and treatment plans. These sessions were helpful, but what shocked me was where I truly learned to understand daily life with my disease: my peers, during rapid-fire discussions in hallways or sitting around a lunch table. We began to talk beyond the medical management and focused on how to “live” with diabetes.

I realized that there was something missing that was needed in our community: a patient-led psychosocial idea exchange where we could share our fears, frustrations, and tips in a safe, protective environment where no one felt judged or criticized. The Diabetes UnConference was born.

Share Responsibility

I couldn’t do this alone. I asked for help from a group of people impacted by diabetes who I trusted: my peers. Those whose wisdom I sought out and those I admired for their ability to be honest and supportive became the facilitators for sessions discussing intimacy issues and burnout. They helped others share their secrets by creating a sacred space where social media was not allowed to penetrate. Our peers are our experts and by acting as partners, we have the opportunity to switch roles during discussion.

Christel and peers at the Diabetes UnConference

 

Respect Each Partner

Part of our commitment to each other during the conference is to check in frequently with these questions: “Do you feel welcomed? Do you feel valued? Do you feel respected?” Many of the conversations that occur during sessions are deeply personal and even if we have different attitudes or treatment plans, the overarching goal is to learn from each other. We have had attendees diagnosed in the past six months sitting next to peers diagnosed over 50 years ago — and each said they had learned something new and were able to find a connection, because they vowed to respect their individual experiences.

Listen and Communicate

I value the communication between my peers during The Diabetes UnConference, because in listening to others and being able to openly share my experiences, I have learned new ways to manage daily life with diabetes. While I may not utilize a particular treatment, learning about it from my peers is crucial, because I never know who I might meet in the future who is interested in that particular issue. Connecting and communicating with others widens my partnership with my peers through listening. Many of our attendees say that because of what they learned at The Diabetes UnConference, they have made positive changes to their daily management and have achieved measurable positive outcomes. I’m one of those peers.

Evolve and Accept Growth

In addition, by listening to the feedback my peers gave me from the first conference, we have evolved. One attendee said that they wished those who love us — spouses, significant others, parents, children — were able to have the same type of psychosocial support and safe, non-judgmental environment. Many other peers agreed, and the next year, we created that space for a new group of peers: PLUs (People who Love Us). Partnering with my peers allowed us to grow and welcome more partnerships that didn’t exist before.

Reflect, Evaluate, and Reprioritize

As The Diabetes UnConference matures, I have found my tribe and helped to grow partnerships that have turned peers into trusted confidants and friends. Many attendees check in with each other on a regular basis, despite living across the country. My peers and I are looking to expand ways to have those trusted face-to-face conversations in a safe environment to others who can’t attend a conference due to location or financial constraints. We are looking for what’s missing and finding ways to fill that gap.

My experience with founding The Diabetes UnConference has me wondering how many other health conditions could benefit from this type of psychosocial idea exchange and how others could partner with their peers. Using these Partnership Principles offered up by the PatientsLikeMe Team of Advisors is a great place to begin.

 

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“I really felt that we were heard” — PatientsLikeMe staff member Dan shares his experience at the FDA psoriasis conference

Posted August 2nd, 2016 by

August is Psoriasis Awareness Month, and we’re kicking things off with a recap from the FDA’s public meeting on psoriasis back in March. The meeting was part of their Patient-Focused Drug Development Series that aims to bring the patient voice to research.

Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe notes that, “The most effective part of the meeting was the patient stories. Even though a lot of quantitative data has been gathered by the FDA, they’re learning firsthand how difficult it is for these patients. Having an event that’s so patient-centric – where people are telling their stories and those attending can submit questions through the webinar – really lets patients make their voices be heard.”

The PatientsLikeMe psoriasis community also gave feedback through a survey in the weeks before the meeting, and this data was shared with the FDA. Check out the full report of what members had to say.

And Dan, one of our community moderators here at PatientsLikeMe, attended as both a member of our staff and a patient. We caught up with him to chat about his experience. Here’s what he had to say:

What was it like to attend this event as someone living with psoriasis?

I have had psoriasis for 23 years. I wasn’t alone, as my sister and brother had very mild symptoms, and my father and his brother had more moderate symptoms. So for me, having the disease itself wasn’t scary from a medical point of view. But I certainly suffered from social stigma as plaques cover all of my legs, arms and much of my torso.

As I learned from meeting my peers at the PFDD psoriasis conference, many psoriasis patients tend to hide their symptoms as best as they can by wearing clothes that conceal it, and by not participating in activities that would expose it to the public. I, too, was very challenged by the fact that my condition was so visible.

I also have ADD and an acquired learning disability (auditory delay due to an early childhood fever), on top of which I experienced a fair amount of trauma, which resulted in PTS.

I think this is probably why my symptoms were so bad since psoriasis is closely linked to stress and mental health. As a teen, I was grasping for coping mechanisms and esteem builders and I found solace and comfort in climbing, swimming, and hiking outdoors. When I started to experience my psoriatic symptoms, I couldn’t imagine giving up these activities. And so, I simply had to endure and explain my disease to everyone. I rarely, if ever, met anyone else who allowed their psoriasis to be as visible, and I felt extremely isolated. Not to mention my peers also had little or no exposure to people living with this condition aside from myself, thus increasing my issues with stigma.

Going to this meeting was amazing; I was surrounded by patients just like me for the very first time.

It felt incredibly rewarding! However, because I’d spent so much effort over the years suppressing my issues with stigma and the discomfort of psoriasis, it was challenging to process the emotions that came flooding back as I listened to the other patients’ experiences. I was almost brought to tears more than once. Not just for my peers and their suffering, but in recognizing a new awareness about my experience.

My peers were all gathered here to advocate and to express their hardships regarding psoriasis, and in the process they demonstrated incredible personal strength in dealing with this condition and speaking up about it. I was really impressed and inspired.

I also realized how strong I had become by managing the symptoms and stigma with little to no peer support for so many years. This in itself was also a very powerful experience; incredibly validating.

What were the most talked about issues at this meeting?

Much of the meeting revolved around two main issues: the pain and discomfort of psoriasis, and the stigma of having a visible and disfiguring illness. But also many interesting aspects of the patient experience were brought up. For example, nearly every African American present as a patient reported disparities in diagnosis. They all reported that their physicians were not aware that African Americans could even have psoriasis, leading to years of medications prescribed for infections they never had, side effects, and feeling that the medical system had completely failed them.

The prominent topic was around the levels of pain and itching that people experience with this disease, but then it migrated to include discussion of the cognitive and emotional toll of the illness. The level of patient suffering was palpable and very powerful, and sent a strong message to the FDA and the community attending.

Some people experienced constant burning feelings, like their skin was on fire. There were descriptions of feeling like their skin was encased in a cast of plaques, stiff, and uncomfortable, as well as sharp pangs of the open cracks and sores, which any movement or itching created. For many the pain was crippling.

There was also a lot of mention of the stigma experiences from patients recalling their experience as young children and adolescents, managing the emotional challenges of growing up combined with having a misunderstood and stigmatizing skin condition.

Psoriasis manifests in flakey white scales on top of fiercely inflamed red skin, which often cracks open and bleeds. Most people that we meet in our daily lives have no idea what psoriasis is, and are often afraid to even ask. This can lead to us being treated like we are infectious. In many ways it’s hard to blame them, the affected areas often look like Hollywood made-up zombies…

We also we leave bits of ourselves everywhere in the form trails or even piles of silvery flakes on chairs, under our desks, all over the house, and the cracked inflamed skin often leaves blood spots on any light colored clothing, bedding, and furniture.

I have always stepped past my shame and used the opportunity to apologize for the gross mess that I leave because it gave me an opportunity to educate people about what I have so hopefully they wouldn’t be scared of me, but many others in the group reported having a really difficult time talking about their illness with others.

Many coping mechanisms were described like avoiding dark clothes where the flakes would be very visible, or avoiding light clothes as they could highlight the blood stains. Many people also talked about always wearing long sleeves and pants, and going so far as closing the cuff’s of their shirts and pants with adhesive tape to prevent the flakes from spilling out everywhere in public.

Everyone also described this constant emotionally taxing vigilance of trying not to itch or scratch our affected skin as it makes more flakes, which is hard because of the overwhelming itchiness and burning pain. To compound this, many patients in the room had psoriatic lesions on their buttocks and genitals. Can you imagine being in work, or class, out shopping and being consumed with trying to manage the urge to stick your hands in your pants and just itch away? A tragic reality that results in shame, distraction, and, in the end, exhaustion.

Then there is the ever-present social stigma risk mitigation; always shaking out your collar, and sweeping flakes off one’s shoulders away so you don’t look like your are a walking trail of dandruffy, diseased skin.

Even when we are surrounded by educated and empathetic people we know or at least project that they are all affected by our appearance and the messes of “bio waste” we leave in our wake, there is this constant knowledge that we are less desirable as friends, lovers, and even just associates and co-workers; as one panelist reported that they felt as though people treated them as if the were a leper. It’s nearly impossible to disassociate our identity from our disease, because everyone sees our disease right in front of them.

There were a lot of reports of absenteeism from things like school, work, and even fun social events like going to the beach; anywhere public where the emotional effort of managing stigmatization 24/7 was simply too much to handle on a day-to-day basis. There were even questions brought up about whether we were more susceptible to STDs. The meeting facilitator at the FDA explained that they had never heard so many patients attribute such levels of emotional and cognitive fatigue, and brain fog/mental exhaustion to psoriasis. She seemed to be recognizing this as a new and disabling symptom. The FDA was listening!

In the end, we heard each other’s voices amplifying the realities to the FDA and the public that psoriasis clearly affects people on very deep levels; the obvious physical pain and itching, as well as the social stigma fears; the internal shaming and awkward external conversations we have with everyone we meet about our bodies and how our bodies corrupt everyone else’s living and work spaces.

I think the prevailing message was this isn’t a painful and uncomfortable skin issue, this illness touches every aspect our lives especially our mental health.

The irony is, like all autoimmune disease, psoriasis is exacerbated by stress, and having psoriasis causes a lot of stress. I don’t think the medical community has ever really quite understood the interplay between these symptoms and conditions.

Did you feel like the meeting was patient-centric and that your voice was being heard?

I really felt that we were heard. Everything in the program was designed to capture the patient’s voice.

They had this amazing system set up: the facilitator or the FDA staff would ask a panelist a question, and, as soon as they received their answer, they would turn to the audience and ask us the same questions in a multiple choice format. The community listening online would respond from their devices, and the patients in the audience all had received small wireless handsets allowing us to provide our experience. They would then project the results on large screens positioned around the room allowing us to analyze the answers in real time, often prompting the FDA staff to ask follow up questions so they could really gain an in depth understanding of the issue at hand.

You attended as both a PatientsLikeMe employee and a psoriasis patient. What was it like to engage in something like this with an organization like the FDA with that kind of dual perspective?

I think this was the most difficult part for me for two reasons. I wanted to make sure that I was an active participant as a psoriatic patient, and I also was trying to network with other patients and providers to let them know about PatientsLikeMe, and capture the experience so that I could relate it to other patients like me who may attend future events. It was certainly challenging to do all three at the same time.

Going to this event and participating as a patient meant so much to me, knowing that I’d be communicating my experience to these senior staff members of the FDA who will be guiding the future of psoriasis therapies. And hearing other people’s stories about their experience really helped me understand more about my own experience. I realized that I had never really fully processed the challenge of having a stigmatizing visible condition. I also realized that I had a strength that I had not recognized — although my psoriasis has been very challenging, I have managed to live a very full life and have been able to manage the emotional toll that psoriasis exerts. I also felt a little absolved: Has my depression and fatigue been partially fueled by my psoriasis? Have I been shaming myself for years for not overcoming these two issues, when they were not moral failings but part of a larger systemic health condition associated with my autoimmune disease?

On the whole, I’m very glad I went to the PFDD conference on psoriasis; it affected me profoundly and I think that the FDA really was listening and absorbing the experience of the psoriasis patient community. I was proud to be there and I was inspired by the strength of my peers. I really thank PatientsLikeMe for providing me with this rare once-in-a-lifetime opportunity.

 

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Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

………………………………………………………………………………………………………………………………………………………………………………

Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

………………………………………………………………………………………………………………………………………………………………………………

Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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Sleep health: An interview with Dr. Lisa Shives from the National Sleep Foundation

Posted July 20th, 2016 by

 

How much do you know about sleep health? We’re digging deeper into how sleep relates to chronic illnesses in a new collaboration with the folks at the National Sleep Foundation (NSF), who are dedicated to improving health and well-being through sleep education.

To kick things off and share what NSF is all about, we sat down for a chat with board member Dr. Lisa Shives. Dr. Shives has extensive clinical experience treating sleep-related disorders like sleep apnea, insomnia, narcolepsy, restless legs syndrome, and circadian rhythm disorders. See what she says below about the role of sleep in medicine and how sleep quality affects other health conditions.

Tell us a little bit about what you do and how you became interested in the study of sleep.

I became interested in sleep disorders because I was so sleep deprived as a medical student and resident. That experience made me take sleep very seriously and deepened my empathy for patients with sleep problems.

What do you think is the biggest misconception about sleep disorders?

I think the biggest misconception is that people think that people with “sleep problems” (usually meaning insomnia) are just anxiety-ridden or Type A personality types. — that they just need to relax and get into some good bedtime habits and then they would sleep fine. For people who do not have sleep/wake problems, sleep is the easiest thing in the world. They can’t understand how elusive a good night’s sleep can be.

You’ve managed clinical research studies that focus on sleep disorders, the effects of diet and exercise on sleep, and metabolic and cardiovascular abnormalities associated with sleep disorders. What can you tell us about how sleep disorders affect other conditions?

We have known for years that sleep apnea increases the risk of cardiovascular disease, but now we have evidence that short or poor sleep for any reason also increases the risk of diabetes and weight gain due to the metabolic disturbances that are caused by poor sleep.

For you, what’s the most interesting part of your work? The most interesting discovery that’s come out of your work?

For me, the most interesting recent discovery is that poor sleep or even sleeping at the wrong time deregulates metabolic and hormonal processes. It’s a major contributing factor to the chronic conditions that make up the bulk of the disease burden in modern society: cardiovascular disease, hypertension, diabetes, and obesity.

What role is the study of sleep currently playing in medicine? And how do you see that evolving in the years to come?

I am happy to report that I see a growing awareness among my colleagues in the other fields that sleep is just as important as diet and exercise.

What’s your best piece of advice for patients living with sleep disorders alongside other chronic conditions?

Don’t accept that nothing can be done about your sleep problem. Just because it is common for people with your medical problem to have a sleep disorder does not mean that nothing can be done to improve your sleep/wake cycle and how you feel when you are awake.

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we discovered that a bad night’s sleep is the norm for people with health conditions and that lack of sleep affects them far more than the general population. What are your thoughts on this?

As I said, just because sleep disorders are common among people with certain conditions, that does not mean that the sleep/wake cycle cannot be ameliorated. My advice is that patients should talk to their primary care physicians and sometimes seek out a trained sleep specialist to help them sleep better and feel more alive in the daytime.

 

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14 questions to ask before you enroll in a clinical trial

Posted July 18th, 2016 by

Have you ever participated in a clinical trial? How much did you know going into it? Our partners over at the Center for Information and Study on Clinical Research Participation (CISCRP) came up with a whole list of questions that will help you decide if a clinical trial is right for you before you commit.

Here are a few of them below, but you can check out the full list and a printable version here.

 

Got any questions you’d add to this list? Head over to the forum and share them with the community!

 

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PatientsLikeMe Names Marni Hall Senior Vice President

Posted July 11th, 2016 by

Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives

CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on expanding the role of real-world evidence in precision medicine, and in the research agendas of PatientsLikeMe and its customers.

Hall joins the company from the U.S. Food and Drug Administration (FDA) where she was most recently Director of Regulatory Science within the Office of Surveillance and Epidemiology (OSE) for the FDA’s Center for Drug Evaluation and Research (CDER). In this role, Hall became an expert at sourcing and analyzing big data sets, including adverse event reports, claims, -omics, and other data useful to risk assessment and risk management activities. She led data management and program operations, as well as research and development efforts to identify, evaluate, and implement new data, tools, and methods to support regulatory decision making. Specifically Hall’s team explored big data sources such as the FDA Adverse Event Reporting Systems (FAERS) and the Sentinel Initiative, and led post-market safety studies and programs using observational data to gain insight into drug safety and drug performance.

PatientsLikeMe CEO Martin Coulter said Hall “will now apply her strategic research and operational expertise to help us work with our members and partners to use patient-reported data in new and innovative ways, so that the patient experience can lead to even more significant developments and discoveries, such as improved outcomes.”

According to Hall, the new opportunity allows her to continue to do research in a scientifically-rigorous and patient-centered setting. “PatientsLikeMe has been a critical force in documenting and analyzing real-life patient experiences and evolving the role of real-world evidence in clinical and public health research. My goal is to extend its impact, so that the patient experience drives a future where healthcare is able to emphasize individual needs and preferences. I’m thrilled to join a company that is so focused on helping people thrive each day, while collecting data essential to this emerging field,” Hall said.

A research scientist by training, Hall has spent nearly two decades at the intersection of science and policy. She started her career studying toxicology and molecular epidemiology at Columbia University. After serving as Program Director in the Public Health Group of External Medical Affairs at Pfizer, Hall joined the FDA’s Office of Planning and Informatics (OPI) in 2008 as a Principal Analyst. In this role, she initiated and led the development of CDER’s data standards plan. She was appointed Director of Regulatory Science in 2011.

Hall holds bachelor of science degrees in chemistry and in society, technology, and policy from Worcester Polytechnic Institute. She also holds a master’s degree in public health from Columbia University’s Mailman School of Public Health as well as a master of science degree in biochemistry and a PhD in toxicology from Columbia University’s Graduate School of Arts and Sciences.

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 #dataforgood: data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
+1.617.548.1375