“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS

Posted July 17th, 2014 by

If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below.

The private, invisible pain of MS

Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day.

I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking.

Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things you might do each morning without a second thought. Maybe you play classical piano. Maybe you type quite fast. I did. How are you at your hobbies and your passions with your hands impaired thusly? Having trouble with pens, spoons, forks?

Ever had a hand cramp? Add a few of those in…but, instead of being able to stretch your hand for relief, you find that when you do, instead of clothespins you now have mousetraps on your fingers. Continue trying to go about your regular life without giving thought to this. Throughout the next few days, have someone randomly swap clothespins and mousetraps for arbitrary reasons…perhaps you put your hand in water that is a bit cooler or warmer than your hands are happy with – snap! Maybe your hands don’t want to scrub shampoo in your hair – snap! Pet the dogs as you always do when they rub up against your hand – snap!

So, it’s lunch time now and you’d really like a salad. Ordinarily getting all the veggies from the fridge and prepping them isn’t a big deal…suddenly it’s become a chore that is taking much more thought than you’ve ever dedicated to a salad prior. And the amount of time it is taking is staggering. Once again, the sharp knife has slipped out of your grasp because your fingers are becoming a bit numb and your grasp isn’t quite what it should be. This time as it falls, it slices your right hand and you have to pause to deal with this additional issue. Have fun trying to maneuver that Band-Aid!

So now you’ve got a combo of mousetraps and clothespins on the ends of your fingers, a throbbing cut, and you give up on eating the salad after the fork drops to the floor *again*. You reach to the floor to pick up that fork for the last time, you swear, and suddenly a mousetrap snaps on your inner elbow! What the heck! A reactive jerk knocks your cut hand into the edge of the table, which causes a clothespin to pinch on the top of that hand. As those new pains begin working their way up your arm, your shoulder begins to ache. Not really an ache…more like someone jabbed an ice pick into the joint!

You were supposed to be somewhere this afternoon, but you realize that driving would be far too dangerous…and anyway, how on earth are you going to manage a steering wheel when each time you even move your right arm, the pain sears from shoulder to fingertips? You somehow manage to press the right buttons on your phone to call and cancel the plans you’d been so looking forward to.

It’s meal time and your neck is starting to cramp from the tension of trying to figure out something you can prepare for your family while the pain continues to whine at you continually. You aren’t in a great mood, which gets ill looks from your spouse as they walk through the door and ask “what’s for dinner?” to which you growl in reply. “Man, I had a day from hell at the office,” they begin, and you really want to be supportive but find yourself barking, “I also had a day from hell…could I get some help in here?”

After standing on your feet in the kitchen for the usual amount of time to prepare and clean up from supper, you realize that now all your toes have clothespins on them. Maybe a hot bath will help, you think…and proceed to lock yourself in the bathroom while running a steaming hot bath (you’ve always liked them super hot)!

You’re so eager to jump in and relax, just knowing it can only help. But, after a few seconds in the ultra warm water, your legs turn to limp noodles and you are feeling as if you will faint. The room is steamy and now all you want is cool air. But, your legs won’t obey your brain and get you out of the water. After some battle with the plug, the tub begins to drain and you use your last bit of effort to turn on the cold water and let it run over your feet. For a few moments, this helps and just as your breathing starts to slow and you’re pondering how to get out of the tub, the clothespins on your toes turn to mousetraps – snap!

You call for your spouse. No answer. You call a bit louder. No answer. You scream their name as loud as you can, but they can’t hear you over the Monday night football game! At some point, you give up and decide that laying naked in the empty tub, with pain shooting up and down your arms, your feet on fire, that crying is the only thing left to do. The tears flow, with no attempt on your part to control them.

A commercial break prompts your spouse to tap on the door and ask if you’re ok. No you are not ok! “I can’t get out of the bathtub,” you say. “What?” they ask. “I AM STUCK IN THE BATHTUB!” you scream. Your spouse tries the doorknob, and finds it locked. “Just a sec, I’ll get a butter knife to unlock it,” you hear. Wiping the tears from your eyes, you decide to buck up. You hear the door being unlocked from the other side and then a slam as it knocks into the drawer which you left out and is now blocking the door from being able to open.

Sometime later, you are out of the tub after your spouse has wrestled with the door, the drawer, and your wet-noodled legs. You feel ill, too hot and thirsty…you want the fan, ice water, to cool off. Your spouse lovingly abandons his football watching plans to find the fan, bring you ice water, help you dry off…help dress you in your favorite pajamas. He tells you that you need to rest, and suggests if you lay down you’ll feel better. You give in even though you had things you wanted to get done tonight. Maybe a little reading? But you can’t maneuver the book and turn the pages…your hands are both numb and painful. You finally get to the right page, only to fumble the book and it ends up on the floor. Making sure to lay on your left side, because your right shoulder still has an ice pick in it…You. Give. Up. Tomorrow, you think, will be better.

Only it isn’t.

Your legs are not working as they should. You try to get out of bed and collapse on the floor because they will no longer support you. The pain of the clothespins and mousetraps flares again and you find that you now have them running up the backs of your legs, as well. Just sliding your way in a half-crawl down the hall to the bathroom leaves you exhausted. You really don’t have time to care about the rug burns that are now on your knees, because you need to pee. And, in the end, you do not make it to the toilet and find yourself sitting on the hall floor in a puddle that is not the dog’s fault this time. Your spouse is at work and you have to ask your child to come assist you. The humiliation is enough to tow you under, but you put on a brave face and try to make a joke about it, to find something in all this to laugh about.

There is no way for you to get in and out of the tub again to wash off, so you ask for a pile of washcloths and a bowl of water and get to work, slowly. Your child has to clean up the puddle, find clean clothes for you, and do a load of dirty pee-drenched laundry. You are sure you still smell it on yourself. A long crawl back to your room and you decide the floor is just going to have to be where you “are” for today.

After this ordeal, you hope that you can zone out and just survive for awhile, when a zap of electricity shoots through your brain. Your body, quite literally, jolts in reaction. This isn’t part of the clothespins and mousetraps! This is your brain! It happens again. When your body releases the tension and collapses on the floor once more, you realize that someone snuck hot coals under your lower back. Try as you might to remove them, they seem stuck to you and are burning your spine. You cry out in anguish.

This can’t be right, you think. The experiment was only with clothespins and mousetraps! What happened to me? Did I actually faint in the bathtub last night and hit my head? Maybe I should see a doctor, just in case. It takes you 30 minutes to get to the right number in your phone, get it to connect and schedule an appointment. Your appointment is on Thursday afternoon. It’s only Tuesday morning.

Rather than go through each section of the following days, let me just add that by Tuesday night you won’t be able to sleep because now there is an ice pick in your left hip. You also feel like someone shoved a hot curling iron up your wazoo and snapped mousetraps along your “tender areas.” Your arms are weak, sore and barely functioning. You can’t even lift a jug of milk. Your legs vacillate between al dente and so waterlogged they are of no use.

Your spouse takes Thursday afternoon off work to get you to the doctor because you cannot drive, nor can you get from the car to the door of the doctor’s office without assistance. Every movement causes one pin or trap to move and send a new pain. Putting on the seatbelt, your spouse isn’t aware they tapped your shoulder and you try to hide the tears as the ice pick jabs deeper. The hot coals on your back have never cooled. You finally get in with the doctor and begin explaining what has happened this week, and realize that he is looking at you like you’ve grown ten heads. You insist all of it is true and he shakes his head and says, “You look just fine. I don’t see why you’re having such trouble.”

Oh, I forgot to mention…the clothespins, the mousetraps, the ice picks, the coals…they are all invisible. Only you can “see” them, only you can feel them, only you know what is happening with each movement. Your brain begins to realize this wasn’t an experiment, begins to realize that there will be no end to this. That providing endorphins to ‘push through it’ won’t do one bit of good.

There will be no surgery to correct this. No medication will cure it. The most you can be offered is something that *perhaps* will reduce the mousetraps to feel like only clothespins, again. You grasp at it and decide that clothespins are better than mousetraps and you can learn to function in a new way. You forget the person that you were before this past Monday and relegate them to a fond memory which you pull out on occasion for nostalgia…but not too often, because it’s just too painful. A far different kind of pain, but pain nonetheless.

You decide to find things to laugh about, to research potential drugs and supplements which may help. You learn that the myelin coating your nerves is disappearing and the shocks and jolts will only continue to increase over time. You’re making adjustments in life as they are needed; finding tools to help do the things you can no longer do for yourself. Some days there are new mousetraps, new ice picks, new coals. Some days, just getting out of bed to go to the bathroom is all you can manage. There will be no shower, no typing, no phone calls on those days.

Some days you can go outside and enjoy the sunshine, see the blooms on your beloved succulents, watch your dog chase a butterfly. You relish those days and hold onto them during the others. On occasion, you have a really great day: A day when you can ride a few miles in the car without crying out at each bump in the road. You might be able to sit at a quiet restaurant for a few minutes with your spouse and maybe visit a store. You’ll pay for this time, but that’s ok…it’s worth it even if you can’t walk the next day again.

You will endure the comments from the uninformed. How you don’t look like you’re too disabled to work, how *they* don’t take pain meds and never would, that perhaps you just need to exercise more, and why on earth do you have to think about your pain with regard to every move you make. Once in awhile even those who should be informed act just as ignorant and insist that you can’t *really* be unable to work.

You don’t mention the fatigue anymore because far too many people laugh and say, “they get tired too but *they* don’t get to lay in bed all day.” You don’t mention how much it anguishes you when you remember the job you loved and how you wish with all your might that you could do it again. You don’t mention how the neurological damage in your brain makes it so that sometimes you can’t even do grade-school addition.

Sometimes, you’ll smile and nod and pretend those comments aren’t just as hurtful as another mousetrap.  That they don’t sear across your brain like another jolt of electricity passing along the neurons, that they aren’t as harmful as a sudden loss of your ability to walk (again). You don’t mention that emotional stress can be just as damaging to your illness as physical stress. You don’t tell them that their comments are every bit as hurtful as the sharpest pain you feel. You don’t mention the many, MANY other ways that your illness affects you each and every moment of each and every day. That it’s like a tantrum-throwing toddler and all you wish for is that it would collapse on the floor and take a nap and give you a break…for just a few minutes.

Sometimes, you won’t be able to keep the tears back…


For more “In my own words” posts, look here.

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


“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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


Food for thought: July (chocolate) edition

Posted July 14th, 2014 by

Calling all dark chocolate lovers! Did you know there could be a benefit to eating it besides tantalizing our taste buds? A new study started to get some buzz in the MS community forum when a member posted about how it claimed those who regularly consume dark chocolate may enjoy improved walking ability. Here’s what people had to say:

“I have been having problems with dark chocolate causing bowel urgency  :( So have had to be very judicious about my intake.”
- MS member


“Dark chocolate generates endorphins and endorphins are hormones that regulate T-cell proliferation in the immune system. Meaning…dark chocolate may help slow MS progression.”

- MS member


“I can get away with some dark chocolate most of the time, without stimulating an unexpected bowel motion. However, sugar I definitely have a problem with…and cocoa butter? I expect it is not great for us either.”
- MS member

 

Members aren’t just talking about the study though; they’re sharing their favorite dark chocolate food recipes. Check them out. And if you missed our other Food for Thought posts, read the previous editions here.

Share this post on twitter and help spread the word.


The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced data for good back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

Share this post on twitter and help spread data for good.


“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3

Posted July 7th, 2014 by

Eleanor (right), her daughter Kalea (left) and granddaughter Malia.

Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)!

Eleanor talks about her relationship with her psychiatrist Jon and how they recently sealed “nearly four decades of struggle, pain and healing.” Read on for the final chapter, and if you missed Eleanor’s two previous entries, check them out here.

 

 

 

My Psychiatrist of Thirty-Seven Years: Jon Betwee

What can I possibly say? Jon Betwee became my psychiatrist thirty-seven years ago, a month after we moved to Maui from western New York. He retired February 1st, but not before personally placing a few of his patients with one of the very limited number of therapists here. I was fortunate to be in that group. I am seeing a female nurse practitioner, licensed to write prescriptions and well-versed in bipolar disorder. As my PatientsLikeMe friend, Kitty, said to me last week, “She’s no Jon, but she just might turn out OK yet.”

Jon is very reserved outwardly, but extremely discerning and compassionate inside. He became the best friend I’ve ever had and the rock to which I clung whenever I was drowning. Jon was available 24/7, at home as well as the office. He treated me for years for severe clinical depression. Twice during the thirty-seven years I was bedridden because of severe weight loss and inability to eat in the depths of my despair. Both times, Jon came to our home for sessions until I was strong enough to go back to his office.

I was hospitalized once in Honolulu and given – it was discovered later – a series of medically incorrect electroconvulsive therapy (ECT) treatments. Jon later sent me to Western Psychiatric Institute and Clinic in Pittsburgh, where I received excellent therapy with my individual doctor, attended classes in Cognitive Behavioral Therapy, Art Therapy, and received a thorough examination of my diagnosis, etc. I was also given ECT treatments, which I stopped. I consider ECT to be extremely inhumane.

About ten years ago Jon changed my diagnosis to bipolar II. He saw me through two suicide attempts. Frequently he communicated with experts on the mainland concerning my symptoms and medication. I was welcome to call him during the night when violent nightmares drove me to sit in the living room and ponder the value of ever leaving again, a darkness which had become my home. I seldom actually called. I would say to myself, “If it gets worse, I’ll call.” Then it would get worse and I’d say, “Well, if it gets worse than this, I’ll call.” Eventually the sun would begin to rise, and I’d breathe a sigh of relief. I had made it through another night. The important thing was not that I called, but that I knew I could call.

In my frequent cycling, it has taken years to accept his constant observations that when I am hypomanic, I think I am “cured” and ignore any and all red flags. When I am depressed, I cannot remember the healthy periods and feel it would be better for myself and my family to die. Having worked in a settlement house and been active in the Civil Rights Movement, I found a strong, liberal ally in Jon. Over the years we exchanged many books. He introduced me to Kay Redfield Jamison whose bipolar caused her to frequently change her hair color, re-arrange furniture and spend money she didn’t have on things, often for others, which seemed unbelievably desirable, rivaling “the rings of Saturn” in their beauty. Just – like – me. He gave me “Darkness Visible” by William Styron. It was like looking in a mirror. Jon studied my extended family and explained that I had come by bipolar disorder honestly through genetics. This relieved much of my guilt over an illness that frightened my children and challenged my husband.

Over the years, I have been on just about every medication that applies to depression and bipolar II. Some were ineffective; some had side effects severe enough to make me stop them. For two years my main medication has been Selegiline. Jon expressed caution about continuing it just before my therapy ended. Since then I have discontinued it with my therapist’s approval because of nightmares, weight gain and possibility of liver damage.

Two years ago, Jon gave me a detailed printed sheet for recording daily my mood levels, hours slept, and my place on a scale that went from deep depression to extreme mania. I also would write in any event that caused cycling. At each session he checked it, asking questions and pointing out how items I recorded affected my bipolar.

When he changed offices a few years ago, he gave me a painting of a depressed woman which had hung in his former office that I’d admired for years. It dominates my living room. I mention this to show how tuned in Jon was to his patients and how he looked for ways to be kind. There was a time when I couldn’t pay, but he assured me it could be made up whenever we could afford it. All this is vital to treating bipolar. Our lives are spent on a rollercoaster. Our loved ones are pained and don’t understand. A therapist who respects you, isn’t puzzled by your rapidly changing behavior, is never judgemental or impatient makes us feel we do have value and maybe continuing the struggle to live with bipolar is worthwhile. That’s why I am here, able to answer this survey.

Last August Jon told me he was retiring. I cried. For forty-five minutes. He said it would take some time, but he would help me make the transition. During the ensuing months we decided to meet twice a week, sifted through possible therapists until zeroing in on one, and tidied up a major issue that had plagued me on and off for years. I wished my last visit would be cheerful, showing my gratitude for all he had done, but that seemed impossible since every session now ended in tears. Before the last session I spent time preparing for it. I gained the realization that 1) my husband had become my main support 2) my friend, Kitty, on PatientsLikeMe – and other members – would continue to give me help and strength and 3) I reviewed what I’d learned from Jon over the years.

I was able to come to the last session in peace with a smile. We laughed about things that happened over the years. He said he would always be available by phone and we parted with a warm hug, sealing nearly four decades of struggle, pain and healing. I will always have what he’s given me. It is enough.

Share this post on twitter and help spread the word for mental health.


Patients as Partners: Managing High Blood Pressure questionnaire results

Posted July 1st, 2014 by

In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about preventing life-altering conditions that result from high blood pressure, such as stroke, heart attacks, heart failure and chronic kidney disease.

Over 500 PatientsLikeMe members who are living with hypertension worked with our research partner Tamara Kear, Ph.D. R.N., CNS, CNN from Villanova University on our Open Research Exchange (ORE) platform to help make the instrument the best it can be.

From one person we heard — “I have been diagnosed with white coat syndrome. I wore a monitor for 24 hours and it was regular.” What’s that? Read on in the results.

What’s ORE all about again? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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

 


Keeping up awareness for PTSD

Posted June 27th, 2014 by

 

Back in the beginning of June, we posted about PTSD Awareness Month, and now, we’re keeping the awareness going strong for PTSD Awareness Day. To help put a face on PTSD, we shared a bunch of videos from AboutFace, a website produced by the National Center for PTSD that’s all about telling real stories of veterans living with the condition. To get a different perspective, we also thought we’d share a few of their video interviews with clinicians. Here are some to check out…

 

Stephanie Dove
Social worker

My advice to you- “I meet a lot of veterans who don’t want to come to the VA for treatment … because they’re afraid of the stigma. PTSD is a normal, understandable reaction to the experiences that many veterans have been through…”

Dr. Ron Acierno
Clinical Psychologist

How to know you’re ready for help- “Well, if you wait, you’re never going to be ready. Getting ready for treatment is like ‘how do I know I’m ready to get in better shape?’ If you’re feeling pain, you’re ready for treatment.”

Dr. Sonya Norman
Clinical Psychologist

What treatment can do for you- “Feeling better can mean so many different things to different people. For some people enjoying their marriage again, enjoying their family …. it could ‘I’m just enjoying life again.’”

And just this month, One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research. Check out full the collaboration announcement.

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

 


Awareness, prevention, education, and family – the four goals of Men’s Health Month

Posted June 26th, 2014 by

 

This June marks the 20th anniversary of Men’s Health Month, first created by the U.S. Congress and a few other organizations in 1994. Men’s Health Month is all about heightening awareness of preventable health problems and encouraging early detection and treatment of disease among men and boys.1 This year, the campaign has four goals: awareness, prevention, education, and family.

 

 

 

Awareness: Men are at a greater risk for certain health conditions than women, besides the conditions that affect male-specific organs. This includes hypertension, high cholesterol and cancers of the skin, lungs and colon.2 But awareness isn’t just about these different conditions, it’s also about the fake treatments out there, and the Men’s Health Network has put together a great infographic that talks about counterfeit medications.

Prevention: Besides being male, many risk factors contribute to the development of these health conditions. Some of these can be managed with proper diet, exercise and other tactics, but regular screening is the best way to find a problem early. Make sure you discuss screening options with your doctor and know when and where you should go.

Education: It’s not just about raising awareness in June or even the rest of the year – it’s about teaching everyone about men’s health each and every day. As a result, the Men’s Health Network has shared a Key Health Indicators document full of information on heart disease prevalence, obesity rates and more – check it out here.

Family: If you’re a partner, brother, sister, child, cousin or even just a friend, we’re all here to support the men in our lives when they are diagnosed with a health condition.

If you’re looking to connect with others about men’s health issues, check out the forum on PatientsLikeMe – here, the men (and women) of the community chat about all things related to men’s health, and members are always happy to answer any questions you might have.

Share this post on twitter and help spread the word for men’s health.


1 http://www.menshealthmonth.org/

2 http://www.menshealthnetwork.org/library/causesofdeath.pdf


Food for thought: June edition

Posted June 18th, 2014 by

For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets.

MS forum thread: Nutrition questions anyone?

“And on the other hand, some people, (myself, for instance) have resistance to green smoothies…”

“We love green smoothies. I think they taste best if you use 1/3 green stuff, 1/3 banana, and 1/3 other fruit, like berries, peaches, etc.”

“I can understand the value of smoothies, which have all the fiber blended into the drink, but juice? Not only no, but hell no.”

ALS forum thread: Could a steak make you lethargic?

“I get really tired after chewing. Steak would knock me out!” 

“My hubby has always asked for steak dinners since his dx. He says it makes him feel more energetic.”

“Try really small bites and/or mix with mashed potatoes.”

Fibromyalgia forum thread: gluten/sugar/alcohol free

“I have cut out soda and now drink seltzer water. (I like the bubbles).”

“I had to cut out the alcohol, sugar, red meat and a gluten free diet.”

“It has not been easy. I have on numerous occasions opened that cupboard door to the chocolates but then just closed it again.”

 

 


If you could share one thing… -Steven’s inspiring answer

Posted June 16th, 2014 by

PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness. Read his full interview below.

What was the first thing that went through your mind when you were diagnosed with ALS?

After the initial shock came a phase of denial and anger. Like many people with ALS, I had seen a number of doctors over a period of two years and had received several diagnoses ranging from a pinched nerve to benign fasciculation syndrome. Feeding the disbelief was my anger at the neurologist who, after performing a minimum of tests, told me I was dying and to come back when I needed a wheelchair. Since he was a jerk he couldn’t be right, right? Soon my wife and I felt a profound loss for our 4 children and for all the milestones we wouldn’t share like graduations, weddings and grandchildren.

How did your diagnosis change your everyday life?

My diagnosis brought clarity and focus as the realization set in that wallowing in fear gave ALS a victory it didn’t deserve. I am living, not dying, and we live as normally as we can while being proactive about planning for my future needs.

Looks like you’re very active on PatientsLikeMe – what tools do you use the most, and what have you learned about your condition?

I really love tracking my condition and I use the charts to help keep friends and family updated on how I’m doing. The most important thing I have learned is how different and intensely personal everyone’s journey is. Just because something works for me doesn’t mean it is right for others. The forum allows us to share experiences and build supportive relationships.

We see your daughter just got married last autumn – congrats! How did technology help you participate in the wedding?

The wedding of our oldest daughter was one of milestones I didn’t expect to witness. It was a beautiful day. The most obvious technology I used was my standing powerchair that allowed me to “walk” my daughter down the aisle and dance with her. Equally important, though, were my VPAP, Diaphragm Pacing System and PEG feeding tube, all combining to give me the strength to participate, not simply observe. We’ve also recently been blessed with our first grandchild, a girl, whom I talk to with my new eyegaze communication device.

If you could share one thing with the greater ALS community, what would it be?

Don’t let fear for the future ruin the beauty and gift of today.


“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 2

Posted June 14th, 2014 by

Back in May, Eleanor (redblack) wrote about her some of her experiences with bipolar II to help spread the word for Mental Health Awareness Month. She’s continuing this month by sharing about the personal support system she’s developed through a wonderful relationship with her husband Jim, her special bond with a particular mood community member and how she’s learned about the value of sharing the “whys” of her bipolar II.

If you’ve been following along, keep an eye out! We’re going to post the third and final part of her interview in July. Miss the first part? Read that here.

The benefits of spousal support

My husband of thirty-seven years, Jim, is my strongest and most dependable support. We met forty-two years ago teaching high school in New York State. I was the single mother of two boys, four and five, who are Native American and Black on their biological father’s side. Jim was a Catholic priest. The boys soon adopted him as a father figure. We married five years later and moved to Maui. Jim adopted Mike and Mark, and later, we had James and Kalea. Before our marriage, he had already helped me through one suicide attempt.

Over the years, we have always felt we were destined to be together. I can honestly say that in forty-two years, he has never even raised his voice to me. Because of abuse in childhood and my first, brief marriage, I could not have borne it. During our marriage, he has seen me through three other suicide attempts and multiple ECT treatments.

He knows my moods and when they change. During depression, he is my cheerleader, safe harbor and my memory, celebrating the loving, talented person he believes me to be, and reminding me of all my accomplishments. When I am in the pit, he makes certain I know he is with me, but never tries to force an affection frozen within me.

As I worked the last six months to survive without my retiring psychiatrist of thirty-seven years, I have become more aware that Jim is the center of my support and always has been – not my doctor. As this realization grew, our relationship deepened. I thought I knew what a loving marriage was. However, our current relationship is stronger and more beautiful than ever. He is the one person I know who, while having no real experience of being bipolar, knows what to say, how to provide safety and strength, and how to let go when I am able to enter life again.

Support from the members of PatientsLikeMe

After ignoring the other members of PatientsLikeMe for the first few years of membership, I felt compelled to respond when several people commented on my InstantMe daily entries. I had mentioned the difficulty of finding a therapist to replace my retiring psychiatrist, and one member in particular wanted to help me. She lives in a major city and suggested I go to the nearest hospital associated with a medical school where there would be residents available for counseling. I explained here on Maui, we raise pineapples and sugar cane, and most jobs are related to the tourist industry. Hawaii is expensive and lacks mainland amenities such as many doctors from which to choose, support groups for mental health, and large shopping malls (which seem to be a priority for would-be residents).

So Kitty became my sounding board, my comrade-in-arms in the challenging world of bipolar II, and most of all, my friend! I discovered I was often more open to what she had to say than when my doctor said the same thing. Being put together very much like me, she had a perception of a situation I might find perplexing. She cut to the heart of the matter. Once, she suggested a different take on the puzzling behavior of a family member, and after following her advice, the relationship was mended.

She is funny and optimistic despite many problems, and with pretty much daily communication, we manage to keep track of each other’s ups and downs. It raises my damaged self-esteem to be able to encourage Kitty and others. I have learned that friends and family, although well-meaning, are often clueless as to the nature and future of being bipolar. Seeing from PatientsLikeMe members that this is pretty much a constant, I’ve been more at peace and even forgiving toward comments such as, “I’ve tried to help you, but you don’t make any effort,” or “Hasn’t that doctor found the right pill yet?”

Members of PatientsLikeMe also assured me by the tone of some of their entries that I am entitled to lose hope and to want to – and actually do – give up occasionally, and even be quite irritable! None of us are saints. We often feel like the last soldier standing in a curious and never-ending war – and that’s OK!

I could have used their wisdom and comfort years ago, but I’m so grateful I have access to them now. Thank you, staff of PatientsLikeMe, for making that possible.

Using patient charts and InstantMe tools

As for the charts and InstantMe tools, I am making more use of them as time passes. The charts are very helpful – and surprising – since my memory has been seriously impaired by depression. I find myself wondering, “How was it last summer?” and then can go to the charts and see immediately how I felt. Remembering the events of those months, I am often glad to see I handled things well, or sometimes, that I struggled terribly and this struggle accounted for the relationship that fell apart at that time. Seeing and using the daily InstantMe e-mail is a reminder and little push to work again.

Now that I have connections with other people on PatientsLikeMe, I find myself always filling in the comment section on InstantMe, something I originally never did. This is because I now realize the value in sharing the “whys” of my InstantMe selection. I get feedback from others and formulating a reason for my choice helps clarify it in my mind.

Reading past comments of my InstantMe, I’ve been able to spot triggers that appear again and again. I learn what feeling and experiences should be red flags for me. Often having questions or doubts about a medication, it’s so helpful to be able to find out what others have experienced with it. After all, my doctor isn’t taking it. Other members of PatientsLikeMe are!

Share this post on twitter and help spread the word for mental health.


One Mind and PatientsLikeMe join forces to help people with post-traumatic stress and traumatic brain injury

Posted June 12th, 2014 by

Collaboration Will Uncover Real-World Experiences, Generate Patient Data That Improves Daily Living and Overall Understanding of Conditions

SEATTLE, WA—June 12, 2014—One Mind and PatientsLikeMe announced a new multi-year collaboration to help the millions of people worldwide who are experiencing post-traumatic stress (PTS), traumatic brain injury (TBI), or both. The two organizations will work together to expand and enhance the PatientsLikeMe online registry experience for people with these conditions, to provide better resources for day-to-day living, and to capture more patient-reported data for research.

Building on the headway One Mind has made in seeking out real solutions for patients, One Mind CEO, General Pete Chiarelli, U.S. Army (Retired), said the collaboration will address longstanding issues for people with all forms of PTS and TBI. “You only have to look at the way we diagnose and treat people to know that we’re decades behind in our understanding of these conditions. We have an amazing ability to save soldiers on the battlefield, but we don’t do a good job addressing their invisible wounds. And we prescribe a mix of off-label drugs because nothing has been developed specifically for their condition. We need to look to the future to improve outcomes and lives, and this innovative partnership will do just that.”

Almost 8 percent of adult Americans will experience PTS (including the disorder known as PTSD) at some point in their lives, according to R.C. Kessler’s findings from The National Comorbidity Survey (NCS) Report. In addition to veterans, victims of sexual assault and others who have experienced a traumatic event may develop PTS. TBI is broadly defined as an alteration in brain function or pathology caused by an external force that can occur at home, at work, during sports activities, or on the battlefield. In 2009, the Center for Disease Control and Prevention reported that there were at least 2.4 million emergency department visits, hospitalizations, or deaths related to TBI across the country, and that the leading causes of TBI are accidents, sport-related injuries or other incidents.

“We are both of one mind when it comes to the challenges of living with and researching these understudied and largely misunderstood conditions,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “Our partnership with One Mind and the individuals dealing with PTS and TBI will provide insights about effective treatments from people in the real world, and drive new understanding about gaps in care. It will also provide a new resource where people are empowered to help themselves as they learn how to live better with their condition.”

One Mind is also supporting multi-center clinical studies called TRACK-TBI and CENTER-TBI, which will follow thousands of TBI patients over three years. Both studies enroll patients within 24 hours of their injury and are focused on improving treatments through developing new diagnostics tools such as imaging protocols and biomarkers. Heywood added that in the future, the patient-reported data from the TBI community on PatientsLikeMe may be combined with the TRACK-TBI and Center-TBI data, as well as other studies, to create a rich and unprecedented set of information about people’s real-world experiences.

One Mind and PatientsLikeMe are actively seeking nonprofit and other partners to grow the online community and learn together about people’s real-world experiences. People living with any form of PTS or TBI can join fellow members of the PatientsLikeMe community today to become early users of the site and provide feedback on future customizations for the community. Go to www.patientslikeme.com for further information.

About One Mind
One Mind is an independent, 501(c)(3) non-profit organization dedicated to benefiting all affected by brain illness and injury through fostering fundamental changes that will radically accelerate the development and implementation of improved diagnostics, treatments, and cures; while eliminating the stigma. One Mind believes in open science principles and creates global public-private partnerships between governmental, corporate, scientific, and philanthropic communities. Visit us at www.1mind4research.org or follow us via Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 ###

CONTACTS

ONE MIND                                                              
Brooke Whitney
Office: +1 206.946.1768
brooke.whitney@1mind4research.org           

PatientsLikeMe
Margot Carlson Delogne
Mobile: +1 781.492.1039
mcdelogne@patientslikeme.com


“Sharing has given me support” – PatientsLikeMe member Debbie opens up about her MS

Posted June 9th, 2014 by

As PatientsLikeMe member Debbie (chilli123) says, it’s a very private decision whether or not to discuss MS openly. But as you’ll read, she’s doing more than just speaking about her MS – Debbie is spending time with others so they can better understand what life with a chronic condition is like. Debbie also talked about what it’s like to be a mom living with MS, her volunteer work with Penn’s LEAPP program and the inspiration behind her MS blog Adaptolution. Read on for her full interview.

A lot of MS members have shared that finding a diagnosis isn’t always easy – what was your experience like?

For the first eight years of living with MS, the disease was not visible to those around me. However, I have not shied away from discussing my disease. If I can educate one more person about life with a chronic illness, then I could make someone else’s struggle just a bit easier because they will be encountering people who understand. Everyone around me has been supportive. It is a very private decision whether to discuss MS openly – for me, it has allowed others to come into my world a little more and chronic illnesses are isolating. People want to help if we let them. I welcome dialogues about MS wherever I go because it brings awareness to a disease that can easily hide.

To this end, I volunteered at Penn with the LEAPP program. It allows first year medical students to shadow me and see what life is like with a chronic illness. Diseases from diabetes to heart conditions are represented. I represented MS. Again, my thoughts are if I can help one of these students understand what it is like to live everyday and every moment, someone out there would benefit. Furthermore, how awesome would it be if one of these students identifies MS in rounds because of this (that happened by the way)?

http://www.thedp.com/article/2012/09/leapp-brings-medical-students-closer-to-patients

It is a completely different experience walking around with an unidentifiable disease than roaming around in a wheelchair or scooter. Once I became pregnant, my MS went into high gear. That is when I became less mobile. Rolling around in a wheelchair gives me a completely different perspective. Now life is about inclusion. If there is no ramp, I can’t go in. If a friend’s home has too many steps, I can’t go in. Due to the planning it takes for me to go places and be active, I have to reach out for help and share my struggles. Otherwise, I would be severely isolated. People stare because they cannot understand why a seemingly healthy woman is riding around in a scooter. A security guard in the Bahamas asked me if I just didn’t feel like walking around. I did not respond with anger or frustration. He learned more about neurological diseases than I’m guessing he wanted to know.

So far, I have not been judged poorly for having MS. Sharing has given me support, connections, and strength while educating others.

You just started your first blog, Adaptolution, in April - what inspired you to start blogging about your MS?

Now that MS has started pushing into the harsher stages, I find myself fighting to see hope, staying above water, and staying positive. There will be days where the pain becomes overbearing, the exhaustion cumbersome and everything stacks up. In those quiet desperate moments, something positive will come along that changes the momentum to a happier, better place. My blog is finding those moments and celebrating them.

When I travel around during the day, people will stare, look at me, then look at the scooter, look at me, then look at the scooter. I am quite used to it at this point. But when my baby Aaron had that first moment of awareness of that thing mommy was riding around in, I was about to be a crying heap on the floor. He looked at me, then looked at the scooter and back at me. In that moment, I decided that my scooter was not a scooter. It was a racecar, and we sat Aaron in my lap and we drove around the house to his delight. I refuse to let the sadness and pain of this disease rule my life or my family’s life.

Walk us through a day in the life of a mom living with MS.

While I am not married, Aaron has the most amazing daddy in the world and I have a loving and supportive counterpart, Ken. I cannot say enough about how much his support helps me live this life. Now that mobility is an issue, getting up and getting dressed in the morning is the most difficult part of my day. I learned from OT that the more planning I can do the night before with preparing for the next day, the better. I have help with Aaron throughout the day and the help arrives in the morning. While I try to dress as quickly as possible so I can get in to see him (his squeal of delight in the morning is the best), it takes an enormous amount of time and effort. I get in to spend some time with him at breakfast while preparing for the day and I head out to the office. I can drive because I purchased a wheelchair van the moment I saw the writing on the wall with my mobility.

Once in the office, I work on product, talk with customers, check in with all of the staff and get as much done before I am completely wiped out. I usually leave the office at three and head home to Aaron. Once I am home with him I try to do as much as I can with him like reading to him, sharing snacks, watching Baby Einstein, and his favorite…I chase him in the scooter while he runs around in his walker. While I am blessed to have the help I need to enjoy every moment I can with Aaron, MS has changed how that occurs. My arms are too weak to pick him up, so we stay in the floor or a closed space so I can keep him safe. There is always someone around to help me with all aspects of caring for him.

By the end of the day, I am wiped out. But I am truly amazed that with as much pain, fatigue, and damage MS has done, I am living a rich, full life. There are many days where getting out of bed is not an option. The MS pain and fatigue can be unbearable. On those days I will work from home on my computer in bed, if my hands are working. Aaron will hang out with me in bed while we watch Baby Einstein. Ken will oversee the business operations so that all runs smoothly at work.

How has the MS community at PatientsLikeMe helped you learn more about your MS?

PLM has been an amazing resource for me during the years. It has helped me most with navigating what treatments to try and when. It allows me to see how other people are affected by any number of treatments. Furthermore, it allows me to share my own treatment stories to help others. Most notable are my stem cell treatment in Germany and the CCSVI procedure in California. I spent many hours talking to others on PLM about their experiences and tried to give as much of my own information as I could.

I love the forums and I check constantly about what is trending. It gives me new leads to follow in research and it allows me to connect with others who are fighting a similar battle.

Here at PatientsLikeMe, we always work to put the patient first. What’s one change you’d like to see in healthcare to make MS care more patient-centric?

I have been incredibly blessed with a successful business that has provided me good healthcare. That good insurance has allowed me to see good doctors at good hospitals when I have needed to. However, that being said, I have had to fight my way to get my needs met even with health insurance. I need all sorts of equipment to survive. My insurance has covered very little of it. Proper wheelchairs, scooters, leg stim device, ramps are just a few.

I had to fight to be part of the Christopher Reeves program at McGEE in Philadelphia because I had MS and was not a “stable spinal injury.” I had to fight to get onto Rituxan because it was approved for RA/Bcell leukemia, but not MS.

I have created a tremendous support network to get through these battles – many do not. There needs to be more advocates, more support for those who are fighting the battles of their lives. Penn just hired a MS social worker just for these sort of things.

Share this post on twitter and help spread the word for multiple sclerosis.


“I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD

Posted June 6th, 2014 by

June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and PTSD. Check out her full interview below.

 

What went through your mind when you were first diagnosed with PTSD?

I already thought that PTSD was the problem, but it was such a relief to know that I wasn’t “losing my mind.” I have a legitimate disorder, not something that I can wish away or just “try harder” to ignore or push through. I actually felt empowered. Now I knew for sure what was going on, so I could work on treating it. Putting a name to the disorder really helped take a lot of the fear out of it for me. When I am triggered, I know why and I know that it will pass eventually. Just that little bit of information gives me so much more power over it as opposed to before when I didn’t know what was happening.

What have you learned about living with PTSD in the years following your diagnosis?

For the most part, I have learned to roll with it. Not that it is easy or that learning that hasn’t been difficult. I have learned that it is okay to share with my support system when I am triggered and ask for help getting myself back to center. I have learned that it is okay to share how I am feeling with my husband. That was a big step for me. Not because he hasn’t always been supportive of me, he has. Because of my particular issues, it is difficult for me to trust people with my unfiltered self. I’ve learned that I can with him, and it has helped strengthen my marriage immeasurably. People on the Mental Health board at PatientsLikeMe have been incredibly helpful and supportive of me and I know that no matter how bad it gets, I can pour it out on the page in my journal and be supported. For one thing, it can be cathartic to get it all out on the page. For another, it helps me to get feedback. Sometimes all it takes is someone reminding you of the coping skills I have to help me get my bearings.

In addition to PTSD, you’re also living with fibromyalgia and ME/CFS – do you notice a relationship between your conditions? How does one impact the other?

My diagnoses are essentially intertwined. One can trigger the other. If someone is having a long or particularly painful ME/CFS flare, that can make a neuro-typical person anxious. For a person with an anxiety disorder, that is amplified. The pain from the ME/CFS is exhausting. All of those pain signals bombard your brain for days on end, and your brain gets tired. It makes it difficult to think, resulting in the bane of the CFS/ME sufferers’ existence, the dreaded fibro-fog. It is very difficult and emotionally draining, not to mention the effect it has on your sleep. It is difficult to use learned coping skills when you’re exhausted.

On the flip side, anyone with an anxiety disorder can tell you that there are physical symptoms when you’re triggered. With ME/CFS, that is amplified as well and can trigger a flare. Which can amplify the anxiety trigger. It can be viciously cyclical. Sometimes, I just have to rest. There is nothing else to be done. Rest, a good diet, and hydration are the best thing to break it sometimes. If anything, I have learned to pay attention to subtle changes in my body or mood so that I can try to mitigate flares and triggers whenever I can.

You mention a “normal” mask on your PatientsLikeMe profile – can you share what means for you?

I am a mother of two children, I am a wife, a daughter, an aunt, and a granddaughter. I am trying to build a career and lead a full life. People depend on me. I have to “fake it until I make it” a lot of the time. It is difficult. It is nice to be able to take off that mask and be frank about what I am dealing with in the safety of the PatientsLikeMe Mental Health forum. I truly believe the help and camaraderie that I have found there has helped me to maintain a stability that I didn’t have before I found it. I feel much less alone in my struggle, even when in mid-episode, and as much as my “in person” support system is helpful, sometimes you just need to talk to someone who has been where you are. It is indispensable.

How have the connections you’ve made with others in the PatientsLikeMe community helped you to take that mask off?

I am not afraid of my symptoms anymore. I am not afraid to let my feelings out a bit more. I am not afraid to reach out and ask for help, nor am I afraid to offer help to others. Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting. I know that, and I offer as much support as I can to other members because it matters. I feel like I matter. Even when my symptoms are at their worst and I feel weak and small, I know that a note of support to someone else matters. Sometimes when you can’t bring yourself to matter to yourself, mattering to others can keep you going until you can.

What advice would you give to someone who has just been diagnosed with PTSD?

Don’t be afraid. Don’t let negative stigma regarding mental illness keep you from getting help. Our disorders are just as valid as physical illnesses. They need treatment in order for us to function and live our lives. Therapy was absolutely essential to getting me stabilized. It truly helped me to manage my disorders and start living again. If you don’t “click” with the first therapist, try another. When you find the right fit and do some hard work, it will make a huge difference for you.

I have found the tracking tools on PatientsLikeMe to be immensely helpful, especially in the beginning, for tracking symptoms to see if there are patterns in my triggers and symptoms, which has helped direct my therapy and coping techniques. The medication tracker has been helpful as I am one of those super fortunate folks who seem to have a proclivity toward weird side effects from medications. That way I can remember what we have tried and how it worked. Visit he forum. Check out my journal if you want, it’s public. There are folks who have just hung out and read the forum for months before joining in, and that is okay. It helps to see that others think like you and understand what you’re dealing with.

Most importantly, don’t give up. It can get better.