15 posts from May, 2014

Food for thought: May edition

Posted May 30th, 2014 by

Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or cold if you like a good scoop of ice cream, forum threads to share. (If you follow our blog, that hot/cold play just made you smile… again. ☺)

ALS forum thread: tips on how to gain weight while eating healthy?

“… the bottom line is that I need to put on weight. I eat organic foods when possible, no sugar and a little if any wheat.”

“I rely on high calorie fruit (but all are good) such as bananas, mangoes, blueberries, etc. I just blend them up (using one fruit) to make smoothies.” 

“You might try using Ensure, Boost or other nutritional food extras.” 

Idiopathic pulmonary fibrosis forum thread: Primal blueprint

“The basic premise is that we should be eating like our pre-agricultural ancestors and eliminate grains and sugars from our diet. I need to lose weight to get on the transplant list…”

“And it becomes very surprising to find out how wheat is found in many unexpected products.”

“Men do demonstrate the ability to lose weight quicker and faster than women … although I prefer the word ‘program’ to ‘diet’” 

PatientsLikeMe forum thread: Nutrition questions anyone?

“Someone mentioned to me, and I am wondering if it is a concern to others, that the skin of fruit nowadays might have too many toxins from sprays, etc. … do others that eat non-organic worry about that?” 

“Juicing is a wonderful way to gulp down the 10-20 servings of raw fruits and vegetables that many are encouraged to intake.

“My intestines are very sensitive to fibre, I would have to build up the fibre content very slowly, or they would go straight through me …”

Jump into one of these forum threads or you can always start your own with a favorite recipe, general diet tips that have worked for you or a question you think the community can help answer.


The Patient Voice- Fibromyalgia member Becca shares her story

Posted May 28th, 2014 by

 

What does sharing about health experiences and donating #dataforgood mean to her?
“I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca

If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.


Spreading the word for arthritis

Posted May 23rd, 2014 by

Lupus? Check. Fibromyalgia and ME/CFS? Check. ALS, cystic fibrosis, Huntington’s disease, mental health, schizophrenia, anxiety and depression? Check!

There’s been a ton of awareness going on in May, but there’s still one more theme to go – National Arthritis Awareness Month. This month, the Arthritis Foundation (AF) is encouraging us all to spread the word to everyone we know.

According to the American College of Rheumatology (ACR), arthritis is an umbrella term used to describe over 100 medical conditions and diseases, known as rheumatic diseases.1 The CDC estimates that 52.5 million adults in the United States have been diagnosed with some form of arthritis (including rheumatoid arthritis, gout, lupus, or fibromyalgia).2 Common symptoms generally include, but are not limited to:

  • Joint pain
  • Stiffness
  • Inflammation or swelling (most frequently in the hips, knees, hands and wrists)

If you’d like to learn more, the ACR has gathered a wealth of information on all the different kinds of arthritis. And if you’re not sure how to participate in Arthritis Awareness Month, here are a few places to start:

Finally, with over 6,000 members, the rheumatoid arthritis community is the largest group of arthritis members on PatientsLikeMe, but many more are living with osteoarthritis (3,994) psoriatic arthritis (1,278) and other forms of the inflammatory condition. They’re donating their personal health data to help others learn about life with arthritis, and they’re always sharing in the forum about symptoms, treatments, advice and more.


1 https://www.rheumatology.org/about/arthritismonth.asp

2 http://www.cdc.gov/arthritis/data_statistics/arthritis_related_stats.htm


“Just saying” – PatientsLikeMe member Shep talks frankly about his MS

Posted May 21st, 2014 by

The members of the multiple sclerosis (MS) community on PatientsLikeMe are very open when it comes to sharing about their journey, and shep0454 (aka Shep) is no exception. He recently spoke with us about his life with MS, and he pulled no punches when talking about his emotions after being diagnosed, the wonderful people he’s met on PatientsLikeMe and the difficulties in traveling and vacationing with MS. Read on to see his personal journey (and his great sense of humor). 

Hi Shep! Tell us a little about yourself and what you’re currently up to.

I’m currently up to about FOUR foot TEN since I’m now a member of the Power Chair Guild full time!

“A little about myself….” huh!?!?!?! I have been on my MS journey since I was a little boy running into the side of Cadillacs while waiting for the school bus…NO!!!! really!!!

Relapsed and remitted with balance and falling and gran mal and absent seizures and impaired comprehension and blurry vision and heat sensitivity and unexplained lapses of chronic fatigue for about fifty years with no confirmed diagnosis. After a heart attack about seven years ago, I began to proactively seek an answer to these enigmas that all of a sudden wouldn’t go ‘bye-bye’ anymore. About four years ago, I finally received a confirmed MS diagnosis, which has been upgraded to secondary progressive.

OH!! Joy!!! OH!! Rapture!!!…just saying!!!

You were diagnosed with MS about three years ago – what was that experience like?

“’….three years ago”….’ – ….give or take an hour here or there, I’m pretty sure it was Nov. 4th, 2010, at about 2:23pm…and to be honest with you, finally knowing what the HELL I had been over compensating most of my life with all those and several more strangely beguiling symptoms, it was pretty damn WONDERFUL to finally know!!!

When you’ve been through more doctors and specialists in a lifetime than could staff a hospital the size of the MAYO (hold the mustard) Clinic, finally…even with no known cause or cure or even an effective treatment since the diagnosis came so late in life…it was truly a blessing to not have to doubt my sanity and have an answer to the black hole that was the mystery of most of my life…how’s that for drama!!!?!

What are your favorite tools to use on PatientsLikeMe to track your health, and what have they helped you learn about your MS journey?

Just today, another poster on a thread in the MS forum made this declaration about ‘tools on PatientsLikeMe’ and I paraphrase:

‘Out of other MS support/social sites, only PatientsLikeMe offers me:

…a place to track my doctor appointments…

…my treatment history…

…a way to record relapses, related symptoms…

…and their severity and duration…

…charts to reflect not only the ‘physcial’ disabilities associated with MS but also ‘Quality of Life’ and ’emotional & phsycological affects…

…the feeling that I am participating in offering hope to future MS generations by supplying these statistics for research and offering insight into the medical field of the realities of living with MS…

…the ability to blog and reach out to other MS patients, not only for my own needs…

…but to try and support them when I’m able…’

I agree…just saying!

You’re very active in the PatientsLikeMe MS community. Can you share a little about the connections and friendships you’ve made in the MS forum?

My goodness, sir!!!! I’m a Southern gentleman, and we’ens never talk about such intimacies…..!!! But, also in the same regard of being from the south and knowing that everyone loves good gossip; here goes:

I’ve met a MS patient who is Afro-American and drawn strength from her journey of not just her dual diagnosis of MS and cancer; but as a younger woman, sitting at her mother’s bedside and watching her die from the elder woman’s own battle with the typical aggressive type of MS that people of color have to bear………

…or how about, the lady that I came to know vicariously on one of the MS threads who shared how her personal journey was slowly robbing her of anything that was acceptable in her ideal of a ‘quality of life.’ Even though she reached out to mentor college students and tried her best to stay as active as her variation of this chronic illness would allow….this dear sweet and compassionate ‘friend’ took her own life!

I will never know that kind of courage…just saying!

I have been privileged to know many parents who found their own MS experience to become more and more debilitating while still being super mom and/or dad…

…and soccer transport & scout leader….

…and PTA supporter…

…and church/synagogue participant…

…and, when the significant other didn’t run out the back door screaming that ‘they didn’t sign up for living with a crippled, spouse or partner!”

Constantly second guessing whether they’re doing all they can do to provide the best effort…especially for their children.

Feeling guilty about whether they’re passing some kind of DNA or gene to their offspring that will provide them this life-altering disease and all the related challenges.

Pushing themselves so hard some days that they can’t tell the difference from true physical exhaustion and the terrible impact of the MS fatigue that is unique to our specific disorder.

These good folk, with children or without, not realizing that our independent journeys with MS and its disabilities is a rare and just as an unique opportunity to teach our childen…

…our spouses…

…our extended families…

…our neighbors…

…our friends…

…and the public we encounter while living as best we can, by example of how to rise above our personal challenges and teach any who are paying attention how to overcome and persevere with grace and dignity!

Our gift to them…if we choose to accept it as such!

We heard you recently took a trip to the Dollywood/Gatlinburg area – what was it like? How did it compare to traveling before your MS diagnosis?

‘Dullywood’….really!?!?!?! I went a year ago, renting one of their park scooters…had to pay admission to get in…and then rental fees to use an assistive device in order to actually move around the venues…I was then asked to pay EXTRA for a canopy for the scooter since it was raining like it was an Asian monsoon….or something-something!!!!

Gatlinburg has public transit/trolleys that are ADA accessible for wheel and power chairs….and it proudly proclaims this public service…as it should!

“How was this past week’s vacation to this resort area different than before my diagnosis?!?!?!?!?!”

Well, during the relapse/remitting part of my fifty odd years, I was fairly able to drive my butt to Gatlinburg by myself…

…check into a motel room on the third floor and only be concerned if there was an elevator because I felt lazier than normal. Back then, I made sure I brought enough ‘safe sex’ sundries to ensure that I didn’t get some kind of auto-immune disease. Now, my MS provides the ‘safest’ of all safe sex techniques – it has robbed me of any sensation or ability that would be required for basic participation in such behaviors.

I now pack enough extra pants for each day of the trip since now I have to be prepared for little moments of incontinence that makes every day a new adventure for learning how not to be embarrassed as HELL because I didn’t make it to the toilet. I didn’t usually forget why I went into a store or restaurant or down an alley and sit there in my power chair going ‘duuuuhhhh!’ It also didn’t matter to me one way or the other if the public transportation and/or handicapped parking was carefully marked or not.

…nope!!! I was most often pissed off because I couldn’t find anything close to the entrance like all these ‘disabled’ people got away with…. My favorite: NOT having to deal with whether the public rest rooms handicap booth is big enough for me to navigate the power chair around without taking out a partition or backing into plumbing….

…and I guess the biggest difference is that I didn’t need an entourage…

…that would make a rock band jealous …

…just to be able to get there…

…and actually need the bellstaff to unload the SUV for a tip…

…and provide basic assistance with bathing and food prep… …depending on the foresight of the architect and designers as to just how accessible their condo truly is…

…and lastly, finding the good grace and manners to not slap the crap out of some rude a**hole who desperately needs to share how having to deal with my presence in my power chair and needing all of these necessary considerations for be able to be there in our conjoined public space is just too much to bear!!!

….just saying!

Thanks for this wonderful opportunity to explain my MS journey to anyone who would care to learn about what this particular chronic illness has provided me for a life of ‘shit and giggles’….just saying!

 Share this post on twitter and help spread the word for MS Awareness.


Dispelling the myths of schizophrenia

Posted May 20th, 2014 by


May is all about mental health awareness, and we’re continuing the trend by recognizing Schizophrenia Awareness Week (May 19 – 26). Schizophrenia is a chronic neurological condition that affects people’s sensory perceptions and sense of being, and it’s time to dispel the myths about the condition.

Here are some myths and facts about schizophrenia from Northeast Ohio Medical University:1

Myth: Everyone who has schizophrenia knows that they have an illness.
Fact:  Many people who have schizophrenia wait months, sometimes years, and suffer needlessly before a proper diagnosis is made and treatment begins.

Myth: People with schizophrenia are dangerous.
Fact: Studies indicate that people receiving treatment for schizophrenia are no more dangerous than the rest of the population.

Myth: People with schizophrenia have split or multiple personalities.
Fact: Schizophrenia is not a split personality disorder in any way.

The National Institute of Mental Health (NIMH) states that schizophrenia can cause extreme paranoia, along with mental changes like hearing voices others cannot, feeling very agitated or talking without making sense.2 Schizophrenia affects men and women equally, and although it’s normally diagnosed in adults over the age of 45, it is also seen in children. There is no cure for the condition, but antipsychotic drugs are used to manage the symptoms of schizophrenia, and many PatientsLikeMe community members are donating data on their treatments. Check out the NIMH’s fact page on schizophrenia to learn more.

Over the next week, many organizations across the U.S. will be raising awareness for schizophrenia through different events. Here are a couple examples:

If you’ve been diagnosed, you’re not alone – hundreds of PatientsLikeMe members are living with schizophrenia, and they’re sharing their stories in the forum. Take a moment to connect with others who are experiencing schizophrenia in the same ways as you.

 Share this post on twitter and help spread the word for Schizophrenia Awareness Week.


1 http://www.neomed.edu/academics/bestcenter/helpendstigma/myths-and-facts-about-schizophrenia

2 http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml


“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

Posted May 19th, 2014 by

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about living with IPF below.

Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like? 

My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results.

Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t send up any alarms [although looking back at both 2005 and 2008, I can see where there was a definite indication that I was heading towards restrictive breathing problems]. Inhalers only made the coughing worse. The respirologist said I had “sensitive lungs” – gee, doc you think?

Then, in November 2010, I was laid out with another chest cold, coughing my lungs inside out, barely able to walk 10 feet. So the new family doctor calls me. This time, the x-ray report came back that I was showing signs of interstitial lung disease (ILD). What? So onto the computer and in to see the family doctor. When the doctor suggested sending me back to the local community-based respirologist I had previously seen, I said NO BLOODY WAY!

Instead, through a friend who is a thoracic surgeon at the University Health Network (UHN) in Toronto, I got a quick appointment at the ILD Clinic at Toronto General Hospital (TGH) in January 2011. Since I hadn’t yet had a HRCT, I was sent for one and returned to the clinic in June. The initial diagnosis was probably IPF, but maybe NSIP since my HRCT didn’t show the UIP-pattern. The decision was made to treat as IPF so no harmful treatment was undertaken. A biopsy was discussed, but was considered too early for that invasive test and that instead my disease would be monitored via non-invasive tests.

My ILD/PF specialist continued to monitor me and after another exacerbation early in 2012 and the PFT showing a progression of my lung disease, we decided to send me for a VATS biopsy. The September 2012 biopsy clearly indicated the UIP-pattern of lung damage and the IPF diagnosis was confirmed.

Over the last few years, I’ve learned a great deal. I know that the road to diagnosis is often long and complex with not all the pieces of information presenting at the same time — seldom with one test or series of tests taken at one point in time. I feel I’m fortunate that first I had that very unsatisfactory experience with the local community-based respirologist and that through my husband’s work we had met and become friends with a thoracic surgeon who is on the lung transplant team at TGH.

So even though I “naturally” followed the recommended course of action to get myself to an ILD/PF expert, my path to diagnosis wasn’t instantaneous. My biopsy could have just as easily shown that I had a treatable form of PF — still not good news but a different path.

Now with a confirmed IPF diagnosis, I’ve been assessed for transplant (June 2013) and found suitable but too early. But another winter of exacerbations and my ILD/PF specialist is now talking about going on the waiting list.

Another PF member, Lori, spoke about her “new normal” – how did your diagnosis change daily life?

Yes, life with PF has certainly been a series of adjusting to the “new normal” but up until February 2013 when I started oxygen therapy, the changes were small. I had to explain to people why I broke into coughing fits while talking on the phone or in person. I had to explain to people who offered water that thank you but it didn’t help since it was just my lungs telling me to talk slower or shut up. I had to explain to people that I wasn’t contagious when coughing. I had to explain to people that the huffing and puffing were just the “new me” and that they didn’t need to feel they had to jump in — that I would ask when I needed help.

But since going on oxygen therapy with my new facial jewelry and my constant buddy, I don’t have to explain that I have a disease but some people still like to ask questions and I enjoy answering them.

Life with PF and supplemental oxygen is definitely more complicated. I started with high-flow for exertion (6 lpm) and liquid oxygen (LOX). So I can’t spontaneously take off overnight (I would have to make arrangements about a week ahead to have  equipment and supplies delivered at my destination) and I probably can’t fly. But I’m a homebody so that has affected me very little. But I can’t leave the house without considering how long I will be and how many of my LOX portables to take with me.

I still do my own driving, shopping, cooking, housework, and one or two 2-mile walks per day on the farm property — over hilly landscape — because I’m de-conditioned after this past winter. I’m currently having to use 8-10 lpm for those walks but I’m doing them. Use it or lose it!

What made you decide to get so involved in the PatientsLikeMe community and how has it helped you better understand your own PF?

Involvement with PatientsLikeMe was more of a knowledge-based decision. I believe that knowledge is power and knowing as much as I can about my disease helps me to manage the disease. For me, support is sharing what I have found and providing directions to that information for others. Then it is up to them to read the information and decide how, or if, it applies to them.

I believe in being my own medical advocate in charge of my medical team. I’ve probably had a natural propensity for that but my way of thinking in not being a traditional patient was affirmed by Dr. Devin Starlanyl, a doctor with fibromyalgia who wrote The Fibromyalgia Advocate. Fibromyalgia is a matter of living with and managing the symptoms and dealing with different medical specialties to achieve that BUT also accepting that you as the patient are central to treatment and management.

I believe that living with PF is that way as well. The doctors can only do so much. There is no single silver bullet that they can give us, no matter what type of PF, to make it all go away. We have a core set of symptoms BUT we don’t all have all the same symptoms. We have to take ownership for our disease management.

So at PatientsLikeMe, I seek to not only learn but to share what I’ve learned. If I can help one other person shorten their learning curve then perhaps I’ve helped.

On your PatientsLikeMe profile, you reported using a pulse oximeter in 2013 – how did you like it? What did it help you learn?

I found that I was having to slow down too much or struggle too much to breathe. My walking test was not yet indicating that I qualified for oxygen therapy but rather was on the cusp of requiring supplemental oxygen. I was concerned about the damage to my body.

I purchased an inexpensive pulse oximeter to check my saturation. I soon realized that being short of breath was not a reliable indicator that my oxygen saturation had dropped below 90%. Having the oximeter to give me a measure of my saturation helped me to better interpret and listen to the other biofeedback that my body was giving me.

The oximeter helped me to manage my activity so that fear didn’t turn me into a tortoise that either slowed way down or seldom moved. I got a better handle on just how much and how fast I could do things to keep active, to keep my body healthy, to exercise all the parts of my respiratory system, and yet to do it SAFELY!

Looks like you use your profile tracking charts and reports a lot on PatientsLikeMe- why do you donate so much health data, and how do you think that will change healthcare for people living with PF?

Again, my propensity. I love learning! I love sharing what I learn! I keep my own spreadsheets with my medical data but that only benefits me. I know that one of the problems for researchers is accessing a sample population large enough to make meaningful inferences from their findings. And finding a large population in a given geographical area for a rare disease is difficult. Going outside the geographical area is expensive. So hopefully the remote sharing of information will be the answer.

We are all so very different and so many of us also have other health issues on top of the PF. So who knows what comparing us will show? But throughout life I’ve been amazed at how seemingly inconsequential, seemingly totally unconnected pieces of information can come together at a later point and TURN ON the light bulb!

So why not share my health data? It really is anonymous. Unless I provide more identifying information, I’m just a name and a face but maybe with enough names and faces we can get some answers that will benefit us all.

 Share this post on twitter and help spread the word for pulmonary fibrosis awareness.


Taking action for lupus awareness in May

Posted May 16th, 2014 by


If you think you look good in purple, you’re in luck – today is Put on Purple Day, sponsored by the Lupus Foundation of America. As part of the greater Lupus Awareness (Action!) Month in May, today is your chance to make lupus visible and learn about the effects of this chronic inflammatory condition.

Lupus is classified as an immunological disorder by the National Institute of Health, which means that it can affect anything from your joints, skin and kidneys to your heart, lungs and brain.1 Systemic lupus erythematosus is the most common type of lupus, but there are a few other kinds that are much more rare. The cause of lupus is unknown, and anyone can be diagnosed, although it mostly affects women. Some common symptoms of lupus include:

  • Pain or swelling in joints and muscle pain
  • Fever with no known cause
  • Red rashes, most often on the face
  • Chest pain when taking a deep breath
  • Hair loss
  • Pale or purple fingers or toes
  • Sensitivity to the sun
  • Swelling in legs or around eyes
  • Mouth ulcers
  • Swollen glands

Since these symptoms are frequently caused by many other health conditions, you can see why getting diagnosed with lupus can be a difficult process. Many people who are living with lupus don’t even know it yet! 2 3

To help raise awareness for lupus, snap a photo of yourself in purple and submit it to the Lupus Foundation’s Tumblr page. And if you’d like some more ideas for awareness in May, visit the official Lupus Awareness Month page for info on donations, toolkits, quick facts and more.

The PatientsLikeMe team all decked out for Put on Purple Day!

The PatientsLikeMe lupus community is growing, so if you’ve been diagnosed, reach out to the more than 4,000 members who know all about living with the condition. They’re donating health data on treatments and symptoms, and don’t hesitate to ask a question in the forum, either – the community is always up for sharing what they know.

 Share this post on twitter and help spread the word for Lupus Awareness Month.


1 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

2 http://www.niams.nih.gov/Health_Info/Lupus/lupus_ff.asp

3 https://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html


What lies ahead – PatientsLikeMe member John shares his journey with ALS

Posted May 14th, 2014 by

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and outlook after being diagnosed with ALS. And as we speak, he’s traveling across the United States with his adorable dog, Molly (that’s her in the picture) to help raise awareness and funds for ALS through his artwork. Learn more about his efforts on the ART 4 ALS website and check out his full interview below. 


When did you first start experiencing symptoms of ALS? What was your diagnosis experience like?

I first experienced ALS symptoms early in 2012 as I was trying to wind down a career in metropolitan planning. At the time, I was also heading up the recovery group I helped establish in our hometown of Schoharie NY after the devastating floods from Hurricane Irene in August 2013. The flood had put 85% of all homes and 100% of all businesses in town out of commission. I’m proud of the response from the community and from all over. Our group organized over 400,000 volunteer hours in the first year after the flood!

By the fall of 2012, folks were commenting that they were having a hard time hearing me at meetings. At the time, I thought my speech difficulty was related to recent dental work or simply stress. My wife of 33 years and soulmate, Bobby, had serious medical issues and we were doing home hemodiaylsis daily (even during the three months we had to live in our motorhome while our house was uninhabitable).

I stepped down from the recovery group in April 2013 and decided that I should go to a specialist about my speech symptoms. I chose the Movement Disorders Clinic at Albany Medical Center and had blood tests, MRI, etc. In August, the EMG test showed scattered motor neuron damage throughout my body and the ALS diagnosis was pretty solid.

My initial reaction was (1) relief that my condition would likely leave my mental capacities intact. Both of my parents died of Parkinson’s with dementia and full-blown-dementia is not something I wanted to deal with. (2) shock that it was ALS. Whoever thinks that? (3) gratitude for the life I have had. For the first time, I understood the sentiment expressed in Lou Gehrig’s “luckiest person” speech.

You’re traveling across the country with your awesome dog Molly – can you tell us a little about ART 4 ALS and what you hope to achieve?

In December of last year, my neurologist was up front with my prognosis. He said that I am at a high risk for respiratory failure because of my bulbar onset and that, if the failure kicks in, I had about two years to live. If not, he said I have maybe five. He added that if I plan to travel, to do it within the next six months or a year before it becomes more challenging.

That night, I spoke with my wife and she agreed to try to get stronger so we could travel. The next morning she was so weak that she went to the ER. Her body gave up and she died within 36 hours.

After a few months, I decided I would like to travel while I am able, and realized I would need a purpose to make sense of the journey. Since my ALS symptoms (speech, swallowing, weak arms and hands) would be evident to those I encounter, I chose to make the trip about ALS awareness. I prepared a 4 x 5 inch handout that talks about the trip, my art, ALS and the need for research. Friends suggested that Molly would be the face of the trip, so she is featured on the handout and our website. (She is also keeping her own blog, which seems to be more popular than mine!) Often, folks will ask about Molly and that opens the door to talk about the trip and about ALS.

Interest in the trip is strong in Schoharie, so I also set up a way for individuals to pledge to ALS research on a per mile basis. (See www.art4als.com)

Molly (isn’t she cute?!)

Why did you choose to donate all proceeds from your paintings the ALS Therapy Development Institute?

I chose to donate the proceeds from any artwork to ensure I would actually do artwork during the trip. There are many valid avenues for giving to support ALS research. I chose the ALS Therapy Development Institute because of its focus on near-term treatment options.

You mention on your website that you now realize there is an urgency to everything – how has this outlook affected your day-to-day life?

If there is a blessing to having ALS, it is the fact that I have a pretty clear idea of what lies ahead. There will be a time in the not-too-distant future when I won’t be able to do the things I can today. So I make myself explore, observe, contribute, participate as much as is healthy while I can. I have several projects and trips planned with my grandkids later this summer, knowing that next year they won’t be as easy. I have observed that the major characteristics of PALS (Patients with ALS) include hope; advocacy; interest in innovative therapy options; frustration with declining abilities; and regret for not having done more while he or she was still able. I am determined to minimize my regrets.

How has the PatientsLikeMe ALS community helped you learn more about managing and living with your condition? 

There are a number of online community forums available to PALS. When I stumbled onto PatientsLikeMe I was amazed at the sophistication of the website and the amount of information volunteered by so many people. I have searched on the website for other individuals with symptoms that are taking a similar course to mine and am following them, gleaning ideas about adaptive devices I may consider in the future. I have reviewed the self-reported efficacy of different treatments I have considered. This information is available nowhere else. While other forums seem to be content with basic ALS information and random user discussions, PatientsLikeMe offers the breadth and depth of information that I need to live my life fully.

What’s one thing you’d tell someone that has just recently been diagnosed with ALS? 

It’s not quite one thing, but I’d say take time to process the shock; realize that the diagnosis is not just about you, and let your family grieve; and use your days productively in a way that you will reflect on someday with pleasure.

Thanks for asking.

 Share this post on twitter and help spread the word for ALS Awareness Month.


Turning blue for Myalgic Encephalomyelitis Awareness

Posted May 12th, 2014 by

Did you know that today is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs)? CINDs include fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivities, Lyme disease and Myalgic Encephalomyelitis (also know as Chronic Fatigue Syndrome or ME/CFS).

ME/CFS is tough to diagnose because there are no tests for it, and other conditions can cause very similar symptoms. Plus, no one knows exactly what causes ME/CFS, and although it is most common in women in their 40s and 50s, it can occur in both genders at any age.1

So why blue? May12.org is encouraging all advocates to turn a part of their body blue for ME/CFS awareness – you can dye your hair (or wear a wig), paint your nails and even Photoshop yourself. Or, just wear a blue t-shirt 🙂 Check out their Facebook page and their website for more information on ME/CFS awareness, and don’t forget to submit your blue photos!

If you’re looking for more resources on ME/CFS, PatientsLikeMe member Jen has been working on a film called “Canary in a Coal Mine,” that we shared about on the blog back in October. The film is currently in production after a successful Kickstarter campaign, but you can still check out the official website and the video below to learn how you can help change the face of ME/CFS.

 

On PatientsLikeMe, more than 10,000 people are living with ME/CFS, and they’re sharing their health data by tracking symptoms and evaluating treatments. If you’ve been experiencing ME/CFS, connect with others like you in the fibromyalgia and ME/CFS forum and speak with the people who know what you’re going through firsthand.

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1 http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html


“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part I

Posted May 9th, 2014 by

Eleanor and her husband, Jim

 

We just posted that May is Mental Health Month, and so we wanted to help raise awareness by getting the patient perspective out there. PatientsLikeMe member Eleanor (redblack) first experienced bipolar II as a young woman, and she’s been managing her mental health with the help of her family and psychiatrist ever since.

She shared about her journey in a three-part interview series, and we’ll be posting one part each month. In this first edition, Steubenville talked about how twinkling Christmas tree lights gave way to thoughts of loneliness, how life in a convent seemed like the right plan, and how she learned to recognize oncoming depression and mania. Read on for her full interview and keep an eye out for part two in June!


Navigating the ups and downs of a diagnosis

Although I was diagnosed with bipolar II well into adulthood, I feel I experienced it very early in life. On a particularly joyous Christmas Day when I was about twelve, as the dusk fell early on a typical western New York winter afternoon, I stood alone, gazing at the twinkling Christmas tree, and suddenly thought, “This is how it will always be: cold, and dark, and lonely.” This is symbolic of the way I may still cycle during a single day, many times for no apparent reason. At that time, even on happy, fun-filled days, something I may have heard or seen might plunge me into a very dark place and hurl me into a struggle to hold back the tears.

Spiritual highs, melancholic music, lyrics of hymns and the all-encompassing silence of five years in the convent seemed to fit me like a glove. Bouncing from the precious fellowship of the sisters to sad reflection on the passion of Christ seemed normal to me, and I felt I had found the life I’d always craved. Later, when one of my four children whined, I’d reply, “Remember, the world is cold and life is sad,” words I’d often sung as a nun and always felt were such an apt description of life.

Besides the frequent cycling, I’ve experienced other unwelcome features of bipolar such as periods of irresponsible spending and lack of judgment in relationships. So often I found myself standing aside and observing a self who repeatedly cast aside her values and self-pride to pursue an elusive and imaginary gratification.

It took years of therapy and the patience of a saintly psychiatrist for me to begin to understand I had frequent mood shifts caused by mixed up brain circuits – and not existential, undisputable thoughts. First, the universe was amazing, full of possibilities, and anyone who disagreed was to be pitied. Then, suddenly, all roads led to hell. I was totally worthless and no one valued me. I could prove it!

My psychiatrist of thirty-seven years, Jon Betwee, helped me understand that when I was hypomanic, I could not remember depression. When deep depression took over, I was convinced all was lost forever, and the best way to spare others and myself further pain was to die. I tried – four times.

Now, when I see myself feeling a little too “high,” and I think I am funny, have brilliant ideas to share, and life cannot move fast enough, I tally these signs as being hypomanic and put the brakes on. No, I am not happiness and wisdom personified. I put in place some deep breathing, a quiet time of reading, or long conversations with my supportive, knowledgeable husband. Triggers can be too hectic or too frequent and demanding. Eliminating some social gatherings and frenetic activity helps.

I now recognize the approach of depression when I re-play sad and tragic DVDs, cry over everything or imagine hidden and antagonistic messages beneath the conversation of family and friends. Triggers may be letting myself get very fatigued, ruminating about past hurts, making mental lists of all my mistakes and weaknesses. Now I make myself get up, start a task that will absorb and re-direct my attention, and review “What would Jon suggest I do?”

 Share this post on twitter and help spread the word for Mental Health Month.


Four actions = cystic fibrosis awareness

Posted May 8th, 2014 by

You guessed it! Along with mental health, anxiety and depression, Huntington’s disease and fibromyalgia… May is also Cystic Fibrosis (CF) Awareness Month.

Here are some quick facts about CF from the Cystic Fibrosis Foundation (CFF):

  • CF is a genetic condition that primarily affects the lungs and digestive system.
  • CF causes unusually thick, sticky mucus that clogs the lungs and obstructs the pancreas.
  • Common symptoms include salty-tasting skin, persistent coughing, frequent lung infections and wheezing or shortness of breath.
  • 30,000 children and adults in the U.S. are living with CF.
  • More than 75% of CF patients are diagnosed by age 2, and nearly half of the total CF population is over the age of 18.

Although there is no cure for CF, there are treatments to loosen thick mucus and prevent the airway from clogging. The CFF has helpful info about managing and treating CF on their website, and you can see what treatments others are taking on PatientsLikeMe.

So what else is going on for CF Awareness Month? The CFF breaks awareness down into four actions:

WALK as part of the CFF’s “Great Strides” national fundraising event.
ADVOCATE by using the CFF Advocacy Toolkit and reaching out to officials.
EDUCATE by reviewing FAQs about CF and learning about testing.
CONNECT on Facebook and Twitter using #CFAwarenessMonth and #CysticFibrosis

And continue that connecting part with the more than 1,100 CF members on PatientsLikeMe. They’re tracking their progress and sharing their experiences in the forum, and together, everyone is learning more about each other’s journeys with CF.

 Share this post on twitter and help spread the word for Cystic Fibrosis Awareness Month.


Making fibromyalgia visible this May

Posted May 7th, 2014 by

The National Fibromyalgia and Chronic Pain Association (NfmCPA) is recognizing Fibromyalgia Awareness Month with an awesome theme – “C.A.R.E. & Make Fibromyalgia Visible.” C.A.R.E. stands for Contribute, Advocate, participate in Research, and Educate others about fibromyalgia, and that’s exactly what’s going on throughout May.

Fibromyalgia (commonly shortened to “fibro”) causes widespread body pain or aching muscles – myalgia – that can be localized to specific areas called tender points. Other symptoms include tingling, numbness, fatigue and sleep disturbances.1 In most cases, fibromyalgia is limited to women, but men and children can also be affected – it’s estimated that 3% to 6% of the world’s population has the condition, and about 1 in 50 Americans are living with fibro at any given time.2 3

So how can you help raise awareness for fibromyalgia in May?

The fibro community on PatientsLikeMe is one of the largest on the site, and it’s growing by the day – this time last year, there were about 30,000 in the community, and now, it’s more than 42,000 strong! They’re donating their data through personalized health profiles and sharing their stories in the forum to help others with fibromyalgia.

The cause of fibromyalgia is not fully understood,1 and if you’ve been diagnosed, no one understands what it’s like better than you – connect with others living with fibro today and start sharing your experiences for Fibromyalgia Awareness Month.

PatientsLikeMe is the most empowering place I could ever imagine, giving us all not just information, but courage enough to be proactive rather than sit back and hope the doctor is doing the right thing…” – Fibro member Lizupatree

 

 

 Share this post on twitter and help spread the word for Fibromyalgia Awareness Month.


1 http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

2 http://fmaware.org/site/PageServera6cc.html?pagename=fibromyalgia_affected

3 http://www.myfibro.com/fibromyalgia-statistics


Let’s talk about Huntington’s Disease

Posted May 6th, 2014 by

May is packed with mental health awareness, and we’re continuing to recognize neurological conditions through Huntington’s Disease (HD) Awareness Month. HD is a mental health condition that affects brain cells (neurons) and causes them to degenerate over time.

According to the National Institute of Health (NIH), HD can only be passed down from parent to child through a genetic mutation. If a child has a parent with the HD gene, he or she has a 50% chance of inheriting it – and all people who have the gene will eventually develop HD.1 The Huntington’s Disease Society of America (HDSA) states that about 1 in 10,000 Americans are affected by HD, and symptoms typically begin between the ages of 30 and 50.1 2

There is no current cure for HD, but some treatments help to limit certain symptoms like involuntary muscle movement. If you’re looking to learn more about HD or get involved during HD Awareness Month, the Huntington’s Disease Society of America (HDSA) has a great advocacy video up on YouTube (check it out below), and the organization is always looking for e-advocates to join their “Let’s Talk about HD” campaign. And you can always find support and info from others that have walked a mile in your shoes in the HD community on PatientsLikeMe.

 Share this post on twitter and help spread the word for Huntington’s Disease Awareness Month.


1 http://www.hdsa.org/about/our-mission/what-is-hd.html

2 http://www.ninds.nih.gov/disorders/huntington/huntington.htm


It’s time to recognize National Anxiety and Depression Week

Posted May 5th, 2014 by

We already posted about raising awareness for mental health, and now we’re recognizing National Anxiety and Depression Awareness Week (May 5-10). Since 1994, the week has been organized by Freedom from Fear, a national non-profit focused on raising awareness for depression and anxiety.

If you haven’t heard much about these two conditions, here are some quick facts from the Anxiety and Depression Association of America (ADAA):

 

  • An estimated 40 million American adults live with anxiety.1
  • Only one third of these people receive treatment.1
  • At any time, 3% to 5% of all people are experiencing depression.2
  • The lifetime risk of depression is about 17%.2


Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety.2 According to the ADAA, common anxiety symptoms can range from increased worry and social tension to extreme restlessness or general fatigue, and often, these symptoms can be magnified by depression.

Over 17,000 PatientsLikeMe members report being diagnosed with either generalized anxiety or major depression, including almost 7,000 who are living with both conditions. If you’re experiencing anxiety or depression, you’re not alone – you can share your story in the forum and find support on any topic. The PatientsLikeMe mood community is always ready to answer any question, no matter how complex, and members are always sharing their personal health data to help others just like you.

Finally, we mentioned it already, but Steubenville will soon be sharing about navigating the ups and downs of her bipolar II diagnosis on the blog in honor of Mental Health Month and National Anxiety and Depression Week. Keep your eyes peeled!

 

 Share this post on twitter and help spread the word for National Anxiety and Depression Awareness Week.


1 https://www.adaa.org/understanding-anxiety

2 https://www.adaa.org/understanding-anxiety/depression