7 posts from July, 2014

Seeing [MS]: The invisible symptoms – blurred vision

Posted July 25th, 2014 by

Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS] and includes nine photographers depicting nine invisible symptoms in a series of single images. And all of them are inspired by the experiences of people living with the condition – these photographs are what life with MS is like for them. We’ll be highlighting them all on the blog over the coming months to help expose the invisible side of disease.

You are now seeing blurred vision

Photographed by Toby Burrows
Inspired by Emma Giunti’s invisible symptom

 


Emma Giunti talking more about MS and blurred vision.

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“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.

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“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.

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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.

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The Patient Voice- PF member Bryan shares his story

Posted July 10th, 2014 by

 

Since we announced #dataforgood 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.

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“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.

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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.

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