1071 posts by patientslikeme

“I feel it needs to be told”: Member Cathy shares a memory

Posted February 21st, 2017 by

Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory.

Here’s what she had to say…


“I have been saving this story for a while. Don’t know why but I feel it needs to be told. It is just a little story. No twists. No turns. No big reveals. But still. A story to be told.

Around this time last year, I ran the very quickest of errands. Fred was at a time of his illness we seldom left him alone. The kids and I we were a team in hanging with him. But we have lovely neighbors close and a prescription was needed, so just for the littlest of time, he was hanging alone. But that isn’t the story.

It was when I returned that the story began. As I’ve noted many times before, Fred went to too many concerts in the sixties. He always said that. Yet, on returning from my errand, I walked in to find Woodstock live in my home. It was 1969 again.

Jimi Hendrix was playing. So was Janis Joplin. Jefferson Airplane. Canned Heat. Still not sure why John Sebastian was there. Guess we will never know.

Those who knew Fred knew he never danced. Cotillion had ruined him. But there he was, dancing as best he could dance. Stomping his foot to Hendrix, occasionally playing air guitar. I dropped the prescription and immediately joined in.

For just a little time, the joy was back. 

Thank you Santana.

I still have Woodstock on the DVR. Haven’t played it since. But I tell this story because it is a testament to ALS. It is a story of hope, of perseverance, of determination. I was always so very proud of Fred, he was my very best friend. Yet it was in that moment I saw his deep abiding strength. I saw in that moment that though ALS had robbed him of his body, it would never steal his spirit or take away his soul. In the year that he has been gone, I write these little stories to keep his memory, my memories strong. I continue to walk the ALS walks. I continue to be loud.

ALS is a beast. We WILL defeat.”

#kickoutthejams #hopeisstrong

Share this post on Twitter and help spread the word.


What do PatientsLikeMe members think about the Affordable Care Act?

Posted February 16th, 2017 by

With a new administration in Washington, the future of “Obamacare” is uncertain. So we wanted to know: What do patients think about potential changes to the Affordable Care Act (ACA)? More than 2,000 PatientsLikeMe members recently shared their thoughts in the largest patient poll on the 2010 health care law.

Previous large-scale polls about the ACA focused on the general population, rather than specifically asking people with health conditions to weigh in. But in this poll, we heard directly from 2,197 members living with a variety of conditions, including MS, fibromyalgia, Parkinson’s, depression, ALS, diabetes and cancer.

“Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

‑ Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety

Overall, PatientsLikeMe members have similar feelings and concerns about the ACA as the general population. But patients – who have regular, real-world health care experiences – see some benefits that the general population might have overlooked. Take a look at these snapshots of some key findings from the poll (tap each graphic for a larger view).

No go on repeal

Those who took the PatientsLikeMe poll* were more likely to oppose a repeal of the ACA than the general population**.

Click image to enlarge

What should be scrapped?

When asked which one component of the ACA they would eliminate, if they were forced to choose, patients were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.

Click image to enlarge

 

How helpful is the ACA?

More than 37 percent of patients said the ACA has been “very helpful” for people with chronic conditions, while nearly 20 percent said “somewhat helpful.” Also, nearly half of patients (46%) said the ACA needs only minor modifications.

Click image to enlarge

Strong opinions stand out

People living with major depressive disorder (MDD) as their primary condition were more likely to oppose a repeal of the ACA. The MDD community may have a stronger stance on recent health care policy because of a 2013 rule requiring insurers to cover mental health and addiction issues equally to physical health ailments.

Click image to enlarge

Money talks

Lowering costs is a priority for both patients and the general population. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. And lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.

Click image to enlarge

“I think the problems with this health care program affect those individuals who are caught in the cracks … who do not make enough but do not make so little that they are covered by government programs,” said member Randy, who took the poll. “But we had these problems before the Affordable Care Act. So we need to fix [it], not take [it] away completely.”

What do you think about the ACA? Do you have a different take? Jump into the forum and keep the comments coming. Your voice – the real-world patient voice – matters.

 

* See the full report on the PatientsLikeMe poll.

** General population results came from a 2016 Kaiser Health Tracking Poll.

Share this post on Twitter and help spread the word.


Meet Christopher – “PTSD is not just soldiers whining and complaining about struggles in life”

Posted February 15th, 2017 by

Say hello to Christopher (ChrisBC), a father, musician and Purple Heart recipient living with PTSD and bipolar disorder. We recently caught up with him to hear about how PTSD affected his marriage and how his diagnosis pushed him get the help he needed and connect with his feelings.

Keep reading to learn how he copes with stigma and the one thing he wishes people understood about PTSD.

Can you tell us a little about yourself? What are you passionate about?  

I was born in Seattle WA, and my family moved to Alaska where I grew up. I joined the Army when I was 19 years old and went to my first assignment at Fort Polk, Louisiana. I spent the next 22 years in the Army. During my time in the Army, I was stationed in seven different locations including Germany. I had five different deployments of varying lengths with three combat, and two peacekeeping. I received a Purple Heart as well as many others in my platoon during my Iraq tour for being wounded under enemy fire. I retired in 2014 and have one daughter who is 11 years old.

I am passionate about music and I play the electric bass guitar for the church that I attend now here in NY. I have played guitar since I was 8 years old and have been playing bass guitar about 12 years. I’m also passionate about family, church community, and raising my daughter.

How has PTSD affected your life? What’s the most challenging aspect of your diagnosis?

PTSD affected my life in a big way in my marriage. It was my then wife who noticed the differences in me and encouraged me to go get help. I finally went after struggling with the symptoms and believing that I didn’t have it and I was strong enough to forget the things I had been through.  Once I knew that I had PTSD and was diagnosed, then I started getting help for even more things that I was struggling with that needed to be addressed.

The most challenging aspect of my diagnosis is being in touch with my feelings. I would tend to block out my feelings and hide them deep inside and put on a false persona because I was scared. I still struggle with this today and have so much support helping me to make it through this.

How do you cope with stigma? 

I believe there should be a law against stigmatizing those of us with PTSD and other mental illnesses. I cope with stigma by not talking about it with those that stigmatize, that don’t understand it, because they already have their views and I don’t like to confront people. I believe the stigma is a real thing and when I see it makes me angry and upset. People are going to do what they are going to do and I just don’t want to discuss issues with them when they won’t understand it. Basically, I use avoidance to deal with stigma.

What’s one thing you wish people understood about PTSD?

I wish people understood that PTSD is not just soldiers whining and complaining about struggles in life. We all have those, but when you have PTSD you are dealing with a 24 hour, 365 days a year illness that is a constant struggle.

What advice can you give others who are struggling with PTSD? What do you find most helpful?

The advice I would give others is to have a support team to help you. Find a psychiatrist, and a psychologist, for those that don’t already have those. Those are the two most important people that will help you through those real hard times when the symptoms are overwhelming.

Share this post on Twitter and help spread the word.


France flips the rules on organ donation

Posted February 14th, 2017 by

February 14th isn’t just Valentine’s day, it’s also National Donor Day. Did you know there are currently around 120,000 people waiting for a life-saving organ donation in the United States today? What better time to take a look at some of the measures other countries around the world are taking in order to combat their own long donor waiting lists.

Earlier this year, France made headlines by reversing its policy on organ donations so that all citizens are automatically presumed donors upon their death unless they join an official “opt-out” registry. Before that, unless the deceased person had made it known they did not wish to donate their organs, doctors were required to consult relatives, who in almost 30% of cases refused. The “opt-out” registry has garnered about 150,000 sign-ups so far.

France isn’t the only country to take an “opt-out” stance on organ donation. Countries like Belgium and Austria have also applied similar rules, and perhaps unsurprisingly, they see extremely high organ donation rates that hover around 98% and 99%. The list of registered organ donors in the US sits at around 48% of the population.

So, let’s take a look at some facts from the American Transplant Foundation about organ donation in the United States…

 

What do you think about France’s new law? Share your thoughts below or join the discussion in the forum.

Share this post on Twitter and help spread the word.


Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

Share this post on Twitter and help spread the word.


Keeping it fresh for heart health month

Posted February 7th, 2017 by

Did you know February is Heart Health Month? And although heart disease is the leading cause of death for both men and women in America, it’s also one of the most preventable diseases. In the spirit of heart health month, let’s raise awareness together – make healthy choices day-to-day, get to know your family health history and get regular check-ups to give yourself the best chance of staying healthy, longer.

Here’s something to get you started today – a tasty (and heart healthy) recipe from the American Heart Association.

 

Balsamic Glazed Fish

Ingredients

  • 4-4 oz fillet fish
  • black pepper
  • 3/4 cup balsamic vinegar
  • 1 Tbsp extra virgin olive oil
  • 1 Tbsp lemon juice

 

Directions 

  1. Heat Oven to 450 degrees.
  2. Season fish to taste with pepper. Place on a cookie sheet or in a 9 x 13 inch casserole dish and bake 10-12 minutes.
  3. While the fish cooks combine remaining ingredients and whisk well. Microwave covered on 50% heat for 2 minutes, stirring half-way.
  4. Drizzle glaze over fish and serve.

Know of any other delicious and healthy recipes you can share? Let us know in the comments or join the discussion in the forums.

Share this post on Twitter and help spread the word.


World Cancer Day – Voices from the community

Posted February 3rd, 2017 by

Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:

 

Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Revisit her story.

 

 

 

 

Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.

 

 

 

Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” Check out what he had to say.

 

 

Share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

Share this post on Twitter and help spread the word.


Top Rheumatoid Blogs of 2016

Posted February 2nd, 2017 by

Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list:

  1. Itis

Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA).

2. All Flared Up

This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA.

3. Arthritic Chick

Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength.

4. An Attitude of Gratitude

Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a “spa day” instead of a sick day.

5. Carla’s Corner

Carla Kienast’s RA journey has included knee, hip, and back surgery and her posts cover everything from the latest CDC guidelines, to how her 12 doctors each have just a glimpse of her whole self, through the lens of each of her individual health issues.

Want to see what other blogs made the list? Check out the Top 16.

Share this post on Twitter and help spread the word.


Meet Hetlena from the PatientsLikeMe Team of Advisors

Posted January 31st, 2017 by

Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still.”

Get to know Hetlena and read on to find out how she stays positive: “After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability.

What gives you the greatest joy and puts a smile on your face?

What doesn’t give me the greatest joy? Not much. I do my best to find joy and appreciation in everything that I am exposed to because waking up to a new day is one of the greatest joys anyone can experience. I’ve always been a morning person, so the smile comes naturally. After living for a while, you begin to realize that you are only given one life, so why not live it to the best of your ability. (…And yes, I could do much better.)

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Being diagnosed with lupus wasn’t the only problem, adjusting to the shift in what I can do and when I can do it is one of the greatest obstacles of living with this perplexing illness. There are so many days that I live in fear of being exposed of my weaknesses while trying to live up to others’ expectations. Being that I’ve willed myself to hold a full-time job while battling this disease, there are many times I secretly cower to the fact that I may not remember something, I may drop my coffee cup, lose control of my arms, or be out sick when I ‘shouldn’t’ have. I feel that society can handle a common cold, but not forever shifting sick days. Folks will say that they understand, but it’s my experience that many do not. I wish more of us —those diagnosed with lupus — were brave enough to not be coy about the unwilling position that lupus places us in. We are weakened by our feelings, our worries that others just do not understand how someone can be so well, so able at one moment of the day, then not functional the next.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

If I had to describe my condition to someone who isn’t living with it and doesn’t understand what it’s like, I’d have them first reserve a few days, maybe even a week or two, to be away from others. This is how this disease can feel, lonely, secluded, and strangely misunderstood. Lupus is an autoimmune disease in which the body’s immune system attacks normal, healthy cells and tissue. The body attacks itself. Lupus isn’t to the point where every doctor’s office has a brochure to give you when diagnosed. You’re told you have lupus, something not a lot of research has been done about, then you are asked to follow up in six weeks—if you have six weeks. This disease is scary, unpredictable, ridiculously confusing, but, thanks to many developments in the last ten years, better. How much better depends on the body. Since no two lupus patients are alike, my symptoms differ from others diagnosed. I am in constant pain. It’s continuous, yet varies at different times of the day. There are times when I’m overwhelmed with discomfort, confusion, anger, and depression. There are times when it all happens at the same time. These heightened times are known as flares, when the disease takes hold in a way that it cannot be controlled. The medicine usually changes with symptoms, thus the costs of doctor visits and medication is additionally horribly painful to the pocket. In retrospect, to understand the upheaval this disease persists upon in one’s life, you’d have to be diagnosed with it to truly comprehend what it’s like living with lupus.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

During my 23 years of living with this disease, I’ve learned that self-monitoring is the first method of self-care that a person newly diagnosed with a chronic condition needs to practice. You cannot support your own successes without tracking your good days and bad days. Maintaining records on medications, symptoms and even your surroundings and feelings help make for a better you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is has been vital that I connect with others dealing with the same condition that I have. Because this disease is so complex and multi-faceted, it is helpful to communicate with other people with my condition. Those, like me, know firsthand how difficult managing this disease can be.

Recount a time when you’ve had to advocate for yourself.

For anyone living with a disease that changes almost as much as the weather, advocating for your health is not an easy task. Lupus flares do not always call before they stop by; so you end up visiting the emergency room more than you’d like to.

With this being said, there have often been times that I’ve had to insist on having an emergency room attending physician ‘check’ for certain vitals that they would normally have not taken or reviewed. When you are already weak, distorted, and out of sorts, as a patient, you are not taken seriously or seen as being a ‘complainer.’ This can be hurtful and annoying. This is why I keep a journal of my symptoms and other important medical information such as my current physician’s contact information and latest test results. Being able to quickly access this information and add to it, if necessary, allows me to advocate for my health and insure that I am taken care of in the best way possible, with the most accurate amount of information.

What made you want to join the PatientsLikeMe Team of Advisors?

It wasn’t that I just wanted to join the PatientsLikeMe Team of Advisors, I just HAD to join! There was no way that I would not have wanted to be a part of a team that helps others advocate for themselves in the most sensible and realistic way possible! PatientsLikeMe believes in the patient point of view to healthcare. How about that for an idea? We need our healthcare providers to know that we appreciate them, but we also need them to know the best way to care for us. That means being open, truthful and as informative as possible when it comes to relaying health information. PatientsLikeMe does just that! They give patients, like me, a voice. A voice that’s loud, clear, and monitored all at once. And, as a patient, this not only helps me, but allows my one voice to be an additional advocate for lupus healthcare awareness.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Everyone needs a safe place of understanding, a nest of relief from feeling anxiety for being misunderstood. Being able to connect with others diagnosed with lupus is comforting. The PatientsLikeMe site provides this place to connect and more. Not only is the helpful health information always relevant and up-to-date, but my very own personal information assists me with my own care. I can look back at my information, target where a flare may have been triggered and get a more than typical perspective on my overall health.

What are you putting off out of fear from your condition?

You have to consider using and appreciating what you already have before you can begin to be happy. You have to do your best to not let the pain, depression, frustration and fear take over your mindset. Meditating and listening to yourself is one of the best ways to clear your mind and re-center. It doesn’t happen overnight, but it can happen. Putting off your aspirations, dreams, and wants due to the fear of what an illness can do means you are standing still. In order to get where you want to go, you have to move. And that means moving past the fear of what could happen into the path of what will happen.

Share this post on Twitter and help spread the word.


Meet Ginny from the PatientsLikeMe Team of Advisors

Posted January 26th, 2017 by

Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy.  She’s also a member of the 2016-2017 Team of Advisors.

Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate and the support of others helps her deal with stigma:

What gives you the greatest joy and puts a smile on your face?

My first greatest joy that puts a smile on my face is spending time with my granddaughter! (She is 2 and the cutest girl on the planet by my biased opinion!). My second greatest joy is connecting with people using either my journey with chronic health issues, or my son’s and being able to help them. I often edit my son’s story a bit if I believe the way his life ended might cause more harm to them, especially my clients.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

People have pre-conceived ideas about depression, anxiety, and seizures and even when I try to inform them, they often bounce back to their former thinking. This causes, not just an obstacle, but sometimes a mountain between us. I have had people tell me they are “afraid of me” because of my seizures. They had been told my seizures are focal, not convulsive. I do not fall on the ground and shake, yet, they are afraid, WHY? Ignorance. I have had relatives who have shunned me due to the diagnosis, later in my life. I lost friends over the diagnosis of depression. I believe in speaking out about the conditions because I do believe we need to be the changers of the world. I know that it is an enormous task. One of my son’s epilepsy doctors was also one who had some big prejudice about the disorder. I went to him after my son’s death. He had told me that I had caused my son’s stigma. I had asked him for many years “How? How was it that I had caused kids to punch my son in the head and ask him to spaz out?” The doctor never answered me.

When we talked after Sam died I showed him the picture of Sam and Tony Coelho on a magazine cover. I asked him if he knew who that was. He did, and smiled. I told him that Tony had told Sam each year when we saw him, “Never be ashamed to talk about your epilepsy.” I told this doctor that Sam did become ashamed because the doctor told him to be ashamed. I told the doctor I believe it is up to us to change the world about how they view those of us who have epilepsy. I treated Sam no differently as I treated my father who had diabetes as I grew up. He had a medical condition over which he had no control. This specialist then nodded his head agreeing with me.

I speak to people to let them know these conditions are medical. They need treatment like a heart condition, asthma, diabetes. It is time they are not suppressed, made to be ignored, or thought shameful.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

My depression can ease up on me like someone adding weight until I cannot carry it any longer by myself. Suddenly I realize I am crying more easily for little reason. I cannot do simple tasks that used to come easily. I thought I was doing well, but have slid back into depression. This is not the same as “sadness.” I want to stay in bed, but no amount of extra sleep is enough. Concentration can become more difficult. I can be grouchier.

When my I miss my seizure medications or have long migraines, I have focal seizures. I can sense a prodrome (aura) when a seizure is coming on. My brain is just not working right during that time. My words are not able to form right or come out correctly. This can happen with both my seizures and when I have a bad migraine coming on so I try to get home to be safe. I have a long warning time, typically. During the seizure my head can feel too heavy for my neck. I am not able to talk but I can sometimes hear what is going on around me. I can have tingling in my face and hands. I will usually sleep after. Even after I wake up I am groggy and my brain is not working at full capacity. Sometimes my vision will “white out” and l have been known to send e-mail during that time that make no sense. Apparently I kept typing even though I was in a seizure. Fortunately it was to a family member who I could explain what happened!

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become informed in your condition as much as you are comfortable with from reputable sources. Find a good support network whether it is family, a support group, faith group or whatever you can form. You will do better with support around you.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been vital to me to find people who understood what I was going through! When my son was first diagnosed, I was not on the internet so it took a while for us to connect with others. When I did it felt like a miracle! Once I connected I have wanted to stay connected. When I was diagnosed a few years later I needed to speak to people about my own connection. These have been my friends for so many years!

Recount a time when you’ve had to advocate for yourself. 

I have found a medication that would be better for me as I went into menopause. I had been at the American Epilepsy Society Meetings and learned about this new medication. I called my epilepsy doctor when I returned. She was pleased to hear about the medication and was more than willing to try this for me. It gave me a return to better seizure control. My doctor is very open to what information I have for her. I have had to fight insurance companies many times for my care and for my son’s care.

What made you want to join the PatientsLikeMe Team of Advisors?

I want to be able to impact others who have chronic health conditions in a positive way. I know that the online community was what got me through years with Sam. Sharing my experiences and passing it along to others my assist them in their journey.

 

Share this post on Twitter and help spread the word.


A PatientsLikeMe researcher’s take on the opioid crisis and new prescribing regulations

Posted January 25th, 2017 by

Meet Emily (EmilyMcNaughton), a PatientsLikeMe researcher with more than ten years of experience in both the private and public sector. She’s here to weigh in on the recent Boston Globe article addressing the aftermath of the opioid crisis. New prescribing regulations have some doctors hesitant to prescribe these drugs, but that could prove more harmful to the patients who rely on them for pain control.

Check out the Boston Globe article, and see what Emily has to say below.

 

A researcher’s perspective

Prescription opioid medications have been widely discussed over the past 15 years, especially with the surge of prescriptions dispensed during the 2000s, which created an epidemic of abuse and overdose-related deaths. Because the prescription-opioid landscape seems to be constantly changing, people all across the medical, public health, regulatory and pharmaceutical sectors have been working to find solutions that will still allow patients to access their prescribed pain medications while minimizing problems with abuse, misuse, death, and product diversion (when patients either share, give or sell their prescription medications, or medications are stolen).

Many would agree that it’s been helpful to increase awareness, education and open communication between doctors and patients about these medications, but some aspects of restricting the availability of prescription opioids might cause unintended harm to patients.  As this Boston Globe article highlights, many doctors are now prescribing fewer opioids than in previous years and in some cases doctors fear that these reductions may hurt patients.

With any public health problem, solutions are not always perfect and there are pros and cons to every decision. In terms of prescription opioid medication, here are some of my thoughts on public health recommendations, regulatory changes and how they might impact patients. 

Advantages

  • There’s more awareness around how to appropriately use prescription opioids, the potential risks they pose and the proper prescribing practices, both within the medical community as well as patients and the public.
  • We’re seeing recommendations for increased patient-doctor communication about goals for prescription opioid use as well as alternative treatments, when appropriate.

Potential Unintended Consequences

  • There’s a growing pressure among doctors who fear there may be consequences for prescribing opioid medications.
  • There’s a possibility that difficult regulatory hurdles might deter a physician’s willingness, or even ability, to prescribe opioid medications in appropriate situations.
  • Blanket regulations that set maximum prescribing limits do not take into account the individual needs of each patient or doctor expertise.
  • Patients might have insufficient access to or may be unable to afford alternative treatments or pain medicine specialists if a physician is reluctant to prescribe opioid medications.

Other Considerations

  • Regulatory changes don’t address the issue of opioid-deaths that are caused by abuse of non-pharmaceutical products, like heroin.
  • For individuals with opioid addiction, substance abuse treatment remains complicated and is not always affordable.

What do you think about this topic?

 

Share this post on Twitter and help spread the word.


Thyroid Awareness Month

Posted January 24th, 2017 by

January is Thyroid Awareness Month. Why do we need awareness? An estimated 15 million Americans have undiagnosed thyroid problems. Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.

Who has HYPOthyroidism on PatientsLikeMe?

  • 6,920 patients have this condition
  • 30 new patients joined this month
  • 1,271 say hypothyroidism is their primary condition

Who has HYPERthyroidism on PatientsLikeMe?

  • 518 patients have this condition
  • 3 new patients joined this month
  • 166 say hyperthyroidism is their primary condition

A simple self-exam to “check your neck” could help with early detection or help you find lumps or enlargements in the neck that may point to a thyroid condition.

Think you might have a thyroid problem? Here’s how to perform a neck check at home – all you need is a handheld mirror and a glass of water:

What’s one thing you’d like others to know about living with a thyroid condition? Comment here or head to the forum to join the conversation.

 

Share this post on Twitter and help spread the word.


Meet Cris from the PatientsLikeMe Team of Advisors

Posted January 19th, 2017 by

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition.

Cris recently presented at the ALS Advocacy conference in Washington D.C., and she chatted with us about why raising her voice is so important: “Without our voices things would remain the status quo.”

What gives you the greatest joy and puts a smile on your face?

Family. Just waking up in the morning. Thankful my son and his wife have taken us in so we’re not alone on this journey. So proud of him as a dad, teacher/coach! Seeing my teenage grandson each day with his silly sense of humor, loving kindness and our talks about his day as he lays on my bed. Seeing my granddaughter every day and proud of the woman and mother she has become – we watch our great granddaughter for her while she works. I can’t hold her but I can feed her on my lap and talk and be silly with her, my husband has diaper duty! Such a joy to be able to spend time with an infant, watch her grow, smile and coo as she becomes more aware.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Without hesitation my greatest obstacle is losing independence. The ability to just get in the car to go shopping, grandson’s football and baseball games or dinner without worrying about weakness, falling or becoming fatigued causing excursion to be cut short for my “driver”. It becomes my main concern when deciding participation in outside activities – consequently I am missing out on events I enjoy.

Ironically, I never hesitate to go to health related advocacy and meeting events (near and far) – perhaps because I’m in a comfortable “safe place” with “my own”. I’m still able to walk short distances without assistance. However it’s unnerving being in the general public subject to constant stares or side glanced looks at my unstable walking. Often wonder if they think I’m intoxicated (which is funny as I don’t drink alcohol) – I’ve jokingly asked if I did drink would it straighten my gait? Upcoming wheelchair usage will undoubtedly escalate social anxiety and more stares.

Public awareness and compassion seems to be insurmountable making the question of on how to further their understanding. My thoughts are start with the young and teens – with the hopes as they grow older they will share compassion. Unfortunately, it seems, unless one has a personal experience with someone with a disease or disability they are complacent. That’s sad.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like? 

Living with ALS, at least my experience so far, is like feeling your body deteriorate one stiffening muscle spasm and tingling nerve at a time all the while your brain is telling you “it’ll pass”…only it doesn’t. Mornings are the hardest moving a finger at a time, then a toe or legs carefully trying to avoid horrific muscle spasms that hurt after subsiding – as if I had just run a marathon or worked out with weights. The loss of use in one arm/hand (2 years now) was tolerable, although as a graphic designer was career ending – now my good right arm/hand is increasingly becoming deficient – although I can still type with one finger. Having someone cut my food has since altered what I choose to eat in company. The mind will still be active as the body loses every function. I’m one of the fortunate slow progression patients still with use of my weakening legs, although several falls have awakened my denial knowing a wheelchair is in the near future. It will need to be tricked out – a power wheelchair with necessary medical features geared for someone with ALS and total function loss. Eventually I’ll be unable to breathe and may use a breathing device or unable speak and with luck will get an eye gaze communicator. Without all it will be death. There is no cure. But living day to day I do the best I can to make every day count.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Take your head out of the sand. Denial is not healthy and a waste of precious time! Importantly with any disease, I highly recommend working closely with your specialist or specialized clinic. Ask about clinical trials – early in diagnosis this could be critical for acceptance in a protocol. Research trials, associations, medications, therapies…anything specific to the disease. Don’t be afraid to ask questions or disagree with treatments. Knowledge is key! Get involved in your diagnosis and it’s “your” future.

How important has it been to you to find other people with your condition who understand what you’re going through?

Extremely important to connect with my fellow pALS and their cALS for emotional and knowledgeable support. They alone understand what I’m going through but unconditionally are matter of fact about its reality. My fellow patients are a family of a disease nobody wants.

Meeting pALS who have further and advanced progression but are still active in advocacy, policy changes, clinical research and more have been my inspirations and mentors. I no longer sit on the sidelines and for them I am eternally grateful.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

So far I haven’t had a problem and had to advocate with the exception of misdiagnosis for over a year. Since confirmed diagnosis I have been fortunate my specialist is a compassionate ALS advocate and researcher who has encouraged my advocacy and participation in educating others.

What made you want to join the PatientsLikeMe Team of Advisors? 

Participating in causes was barely on my agenda the past 60+ years – which I now feel was completely selfish. I was just working, raising kids and grandkids. However, since my diagnosis I came to realize I wasted precious time when my small voice could’ve been heard somewhere making a difference. When I started a clinical trial protocol I was introduced to PatientsLikeMe and instantly felt a bond with the pALS in my forum and was pleased to have met a few at Advocacy in Washington and was surprised by their openness and requests for information and my story. Quickly I knew I wanted to help in any way possible from my diseases perspective to others who just needed a shoulder or guidance. I am thankful that I have the opportunity to “make a difference” so late in my life.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

I have a pretty good attitude and honestly know what’s in store but other members who are going through the worse aspects of this horrific disease have helped me accept reality. But, with that reality have helped me understand the journey and that I’m not alone. “It takes a village.”

Why should a patient advocate for patients care, disease specific necessary medical equipment, legislation or clinical trials?

Without our voices things would remain the status quo – healthcare would continue to be impersonal, medical support equipment for specific diseases would go unused, legislators would put clinical trials on the back burner as being too expensive – consequently patients would continue to die. My closing remarks at ALS Advocacy in DC to my state senators and representatives is a sample of my feelings for our “asks” for my incurable disease but could the message could apply to many! “In closing, I do want to remind you – in 75 years ALS has not discriminated with age, gender, race or economic status and will strike unknowingly at any moment. So, next time YOU drop a pen, choke when your drink goes down wrong, get up stiff and unable to move after sitting or laying or you stumble over that blade of grass – maybe you will think about what legislation, clinical trials and medical support you would like in affect if ALS were to invade YOUR body.”

Share this post on Twitter and help spread the word.


Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

Posted January 17th, 2017 by

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things have been going since we last spoke.

Check out the latest with Bev to see what she had to say about being an eternal optimist, connecting with other “Parkies” and the power of laughter.

It’s been a while (4 years) since we last caught up! How have things been going?

The last time we spoke, I had just had the first part of my DBS surgery. The surgery was an eventual success, but I had some minor complications. The skin on my scalp was so thin, it pulled apart where it was sutured. There was never any infection, but it did require several surgeries and a plastic surgeon to finally get my scalp to stay closed and heal properly. Right in the middle of all these scalp surgeries, I was diagnosed with breast cancer and the tumor was just below my DBS generator, so that made the cancer surgery a bit tricky. I also had a slight complication from the cancer surgery, in that the nerve in my right arm was pinched, so I had limited use of my right arm for about 6 months. Then my DBS settings were encroaching on the mood part of my brain, causing a severe depression. Needless to say, most of 2013 was definitely not a good year!!!

However, my scalp stayed closed and my hair grew back, my arm fixed itself, the cancer is gone (so far) and once my DBS settings were adjusted, the depression quickly disappeared.

Now my DBS settings are controlling almost all my Parkinson’s disease motor symptoms. I’m taking way less Parkinson’s disease medicines and I am back to sleeping 8 hours a night, which is something I hadn’t done in many years. Everything is about as good as it can be with Parkinson’s.

In your profile you mention that it took 8 years to get a diagnosis. Can you tell us a little about that journey?

My early Parkinson’s symptoms were not the typical resting tremor common in more elderly patients. The first symptom that sent me to a doctor was upper back pain near my shoulder blade/spine. I was referred to an orthopedist. Next came the inability to double click my computer mouse at work (more orthopedists.) Difficulty writing followed and then a tremor, but only when my hand was being used. (Think food flying off my fork and across the room.) After being x-rayed, CT-scanned and MRI’d, with everything coming back normal, I was finally referred to a neurologist. He diagnosed essential tremor (ET) and prescribed propranolol. This helped the tremor, but nothing else. My dad had been diagnosed with Parkinson’s the year before, so I asked if it could be Parkinson’s and was told, absolutely not. (Guess he was wrong.)

As my symptoms progressed, I confounded many more doctors, mostly general practitioners and more orthopedists. I even asked my dad’s neurologist if I might have Parkinson’s and he said, “Don’t waste my time, your problem isn’t neurological.” (Guess he was wrong, too.)

My symptoms kept slowly worsening, I needed help putting on a jacket and getting up from a chair. I startled very easily and had difficulty cutting my food. I was very stiff and rigid. My step-daughter, who I saw only once a year or so, was shocked at how much worse I was each visit.

Then my symptoms started progressing rapidly. I was losing the ability to do things daily. I needed help dressing. I could no longer drive. I had difficulty brushing my hair. I walked like I’d had a stroke and my right hand and arm were always curled. My GP was on maternity leave and not wanting to start over with a brand new GP, I took matters into my own hands. I KNEW it had to be neurological, everything else had been ruled out. I also knew it wasn’t ET because the tremors moved to my other arm.

I got a list of neurologists within 300 miles of where I lived, off a medical website. I typed a letter, detailing my medical history and symptoms, and started sending them out alphabetically. I’d send out about five, then wait to see if I heard back. Then I’d send more and wait. When I got to letter W, I almost gave up. But I sent the last few and waited. Dr. Zonis’ office manager called me, said they knew exactly what was wrong and had me come in the next day. They were right in the same town I now lived in, Yuma, AZ. He said Parkinson’s, gave me carbi/levodopa and five pills later, I could move again!

Now, to be fair, we moved around a lot, so the first neurologist I saw was in Colorado, my dad’s was in Florida, and the last one in Arizona. But MANY young onsets don’t have the same symptoms as elderly patients. Dr. Zonis was in his mid-60’s and I was the first young onset he’d ever seen in his practice.

In your last interview you talked about the power of laughter. What role does comedy play in your life now?

Laughter and comedy are still a huge part of my health management. Laughter stimulates your brain to produce more neurotransmitters, like dopamine, so it really is good medicine. And with no side effects! Well, you might pee your pants, but then you laugh at that, too.

You describe yourself as an eternal optimist – how has that influenced your experience with Parkinson’s?

Some people have optimistic tendencies, some have pessimistic ones. I think it is part of you, just like eye color or skin tone. I have always been optimistic, but I know what depression is like (from my DBS induced depression) and I can now empathize with people who feel depressed. It is awful, your whole body aches. You wake up feeling like you’ve been boxing all night with Mike Tyson. You have no hope and you feel down.

Everyone with Parkinson’s disease is different. We progress differently and have different symptoms, but I think my positive attitude explains why, after being symptomatic for 20+ years, I am doing so well.

What’s it been like connecting with others on PatientsLikeMe? Has it helped you manage your condition?

Connecting with others with Parkinson’s disease is essential to living well with the illness. Your doctor doesn’t have the time or knowledge to help you figure out how to live with Parkinson’s disease, they only know how to write prescriptions. People with Parkinson’s disease know the best local doctors, dentists, therapists and helpful tricks and are willing to share their life experiences. For example, replacing medicine bottle caps with the flip top ones that come on vitamin bottles. Parkies also can tell you if this symptom is common or if this side effect is dangerous.

 

Share this post on Twitter and help spread the word.