13 posts tagged “caregiver”

“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

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“Hope makes us strong.” Cathy opens up for National Family Caregivers Month

Posted November 28th, 2016 by

Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. See what she has to say below…

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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Steve Saling’s patient-conceived ALS project

Posted August 15th, 2016 by

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Patients as Partners: Gus and Maria talk partnering with your caregiver

Posted May 11th, 2016 by

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team.

How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this?

Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this.

The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. It’s so difficult and so frustrating because I just want to get up and fix it. I feel like things are getting better, I try so hard to shut my mouth and then listen.

I sometimes feel bad because I want or need help but I don’t want to bother or ask for it. She will always ask me if I need help and I just say no. I feel bothered inside and hurt because she only wants to help me. But I’m working on it every day.

Maria: Gus and I have always worked together. He always tried to make life as comfortable as possible for us all these years. Other than my continuing to work full-time and having to make sure that he has all he needs, my biggest challenge is making sure Gus is getting the proper nutrition and is made as comfortable as possible so that I don’t have to worry too much about him while I’m at work.

What are some new things you’ve learned about each other throughout this?

Maria: Gus is probably impressed with how I’m slowly becoming more patient. Since he has always been the more patient and nurturing one, I am now somehow finding myself being more like him. And I continue to be amazed by his spirit. Even after such a devastating diagnosis as ALS, he was only down temporarily. Although he isn’t able to do very much physically, he continues to be the head and shoulders of our household. He keeps us going strong.

Can you describe the ways you partner? What works and what doesn’t?

Gus: Living on the same page of life, what does this mean? Having an understanding and knowing when to ask for help and doing the simplest things you can do.

Sharing responsibilities sometimes can be tricky. Our bodies may not function but our minds are just fine. Not making a mess and doing your best in every way possible. And no nagging, this is the worst thing possible. And don’t take her or him for granted because we need each other for support and good health. Counting your wins and telling yourself you got this. Sharing your positive thoughts and negative feelings when possible, not holding things inside. Sharing your wins and losses.

Communicating and openness in all ways will make things so much better. I tell my wife everything, good or bad I don’t have anyone else who understands me better than she does.

Maria: Currently I have just been going full speed ahead – on autopilot – dancing as fast as I can. There are a million things I could come up with but I haven’t yet figured out what works and what doesn’t – still trying. My only tip is to continue to stay as informed as possible regarding ALS research and things people have tried to live more comfortably with the disease. Also to help your partner have a better quality of life by trying to find things that will naturally relieve some of the discomfort brought on by ALS.

What’s the most important piece of advice you can give to other couples in your situation?

Gus: The first word that comes to mind is patience (and more patience). There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed. First comes the falling or not being able to use your hands or walking without use of a walker. It’s different for everyone, but the most important part of this process would be communicating and understanding each other’s feelings and how this illness will change everything. It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heartache she endures. To have compassion and empathy really helps.

Maria: Stay optimistic – one never knows how ALS will progress. We have found that with the proper physical therapy and nutrition (Gus has chosen to go with massage therapy, acupuncture, and a gluten-free diet) he continues to get around using a walker. And if his swallowing or breathing starts to feel compromised, he lets his acupuncturist know and he’s good for a few days.

Final thoughts from Gus: Take every day step-by-step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family. For me it’s called positive in and positive out, every word or action matters and your facial expression matters the most. You must become a good poker player, not showing what’s in your hand. Because when you show discomfort or anger your better half will feel like he or she is to blame. Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.

It’s a fact we all struggle with something. No matter what the issues are, they’re important to us. Some of us may have financial debt issues, and others health concerns, and anything else you could think about. When you are ill, sometimes the solutions are a bit more challenging. And that’s where our partners and caregivers come in. The simplest things are now the hardest or a bit more challenging in completing our tasks. Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help? Finding the answers to our questions sometimes may be difficult and strenuous. There are many sites and forums that can assist us like PatientsLikeMe, and other blogs sites associated with partners and caregivers.

Families may not have the resources available to them, finding the information provided will make a difference one patient at a time. Finding help and support is vital – every day someone requires assistance. I believe everyone deserves a helping hand when possible, no matter what. So when your loved one becomes ill and funds are low, they need a place and solutions to their questions and concerns. Sending them to a site may not be the answer, but speaking to them makes it better. Just having someone to listen and allowing them to vent their frustrations is so important. It’s our duty as civilized human beings. Giving back to those who can’t and providing the information is key.

 

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2016 National Compassionate Caregiver of the Year Award now accepting nominations

Posted February 26th, 2016 by

A warm smile. An assuring word. A difficult message delivered with empathy. Has a doctor or other healthcare professional ever made a difference in your life? If you know someone who embodies compassionate care, our partners at The Schwartz Center for Compassionate Healthcare want to hear about it.

Their National Compassionate Caregiver of the Year (NCCY) Award recognizes those who make a profound difference through their unmatched dedication to compassionate, collaborative care – or as Ken Schwartz has said, whose “acts of kindness have made the unbearable bearable.”

Last year we profiled all six finalists, including Rick Boyte, MD, who received the award. At the Annual Kenneth B. Schwartz Compassionate Healthcare dinner in Boston, Dr. Boyte spoke of his patients and their families while accepting the honor, “They are my heroes and the most courageous people I’ve ever met. They’re just getting through their lives. And the love and devotion I’ve seen from families is amazing.”

For this 17th annual year of the NCCY Award, you and others once again have the chance to put forth the name of a caregiver whose caring and compassion has made your health journey a better one.

The nomination deadline is March 31, 2016.

 

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“Hope makes us strong.” – An interview with ALS caregiver Cathy

Posted February 12th, 2016 by

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope.

We took time to connect with her recently and this is what we learned… 

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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Natalie shares her story as caregiver for her mother with Alzheimer’s disease

Posted November 21st, 2015 by

Natalie (center) with her mother, Maxine (left) and her mother-in-law, Pam (right).

When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends?

My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her separation from my father. We both started noticing drastic changes in her attention to detail, motivation to work, cleanliness of her home, etc. and were concerned for her well-being. It wasn’t until she started not answering her phone that we insisted on a change. She simply didn’t want to speak to anyone, because she herself couldn’t understand the changes going on with her mentally, and wouldn’t know how to explain herself. For outsiders, it looked like disinterest, depression and laziness. For myself and my father, we knew something larger was the problem.

What is one thing you learned about yourself as a caregiver for your mom? 

Caring for my mom has taught me so much – and hindsight is 20/20. However, I have found that my resiliency, despite challenging situations, is far stronger than I have ever given myself credit for. When people ask ‘how did you do it?’ I simply reply with the most honest answer I can – There was no other option.

How long and how often were you caring for your mom?

When my mother was diagnosed, the legal implications of her inability to care for herself came to light. Since her and my father were divorced, the State of New Hampshire would have taken control over her finances, healthcare decisions, etc., had there been no one else deemed a responsible party. And at age 20, I was not the ideal candidate. However the thought of the alternative was not something I could bear. Court appointments and legal requests for guardianship took months. When I was finally named her legal guardian, I took on a larger role in her care than I had expected (but was committed to fulfilling as long as I was needed). Additionally, I was her secondary caretaker, traveling from Boston to New Hampshire every weekend on Saturday mornings and returning back to the city on Sunday nights. I cooked, grocery shopped, cleaned the house, did laundry, refilled her medications, paid bills and made sure the caregiver schedule for the following week was set. It was a routine that was well-oiled, but didn’t leave a ton time for the typical weekend ‘R&R.’

How did you balance being a caregiver for your mom with other obligations (work, relationships, planning your wedding, etc.?)

At the time of my mom’s diagnosis and while we moved her back into the home I grew up in, I was an undergraduate at Northeastern University. I would travel back and forth from the city to the coast of New Hampshire to be with her and relieve my father and the other caregivers each weekend. Meanwhile, I was a live-in nanny for a family of three, whom I would care for during the week when I wasn’t at class. I also was just starting a new relationship with my now husband. For the next few years, that was my life. I spent more time in my car than I did in my bed. And while my friends were partying each weekend, I just simply wasn’t around. My priorities were so far removed from those of my age, and I was okay with that. After I graduated and started working full-time, her disease was quickly progressing. Instead of spending Friday nights with my boyfriend (at the time), he would come home with me and help. Once we were engaged, we knew we wanted to move quickly in hopes that she could see me get married. That was the light at the end of the tunnel.

Throughout your mom’s illness, what moment stands out to you most?

Natalie’s mother, Maxine.

A goal that was shared by my father and I was singular and authentic – we wanted to keep mom at home for as long as we were financially and physically able to. Luckily, we spent her money right and found so many helpful resources that were available to us – like the Rockingham VNA and Hospice. Despite her illness, my mom was never without someone by her side that truly loved her – a luxury that many others in a similar situation aren’t privy to. We are so grateful we were able to achieve that goal and to care for my mother at home, even until the day she passed. Selfishly, the moment I remember most vividly in my mind was having her at my wedding, just a month and a half before she passed away. That memory stays with me, and reminds me of something truly magical, even on my most difficult days.

What advice would you give to other caregivers trying to take care of a parent or loved one?

Don’t try to do it all on your own. You will reach a breaking point, and you won’t have the energy to pull yourself back together. Ask friends and other family for help. Have someone come over to relieve you for a few hours so you can shower without worrying the house will catch on fire (yes, I’m not kidding – things like this fall by the wayside). Be honest with others about your situation, because more often than not, they would love nothing more than to help.

If you’re caring for someone living with a chronic condition, you can connect with others who understand what you’re going through on PatientsLikeMe. You can also connect with others in the growing Alzheimer’s community on PatientsLikeMe.

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Joining the effort to find answers from brain diseases and injuries

Posted November 11th, 2015 by

In honor of Veterans Day, we wanted to share two stories from our partner, One Mind.

First, the story of retired Colonel Gregory Gadson, who was wounded during his military service and was living with post-traumatic stress (PTS). PTS affects more than 7.7 million Americans each year.

The second video shares the story of Roxana Delgado, Ph.D. Roxana’s husband Victor was hit by an IUD during military service. She has lived the emotional toll of being his caregiver.  

If you’re a veteran, you can connect with more than 9,300 others in the PatientsLikeMe Veterans forum. Together, we can join the effort to find answers to brain diseases and injuries.

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When children are the caregivers

Posted July 13th, 2015 by

In 1998, the American Association of Caregiving Youth (AACY) was founded to help support a silent, vulnerable and hidden population in the United States – the thousands of children who provide care for family members, but are unable to manage their own lives independently. And to show these strong children that they are not alone, the AACY created the Caregiving Youth Project (CYP) that integrates healthcare, education and a community of support.

PatientsLikeMe is partnering with these two organizations to help shine a light on the lives of these caregiving youths. But who are some of these hidden heroes? Meet Katrina. She’s the oldest of three siblings, and growing up, she cared for her bedridden uncle, her sister (living with down syndrome and heart problems) and her brother (living with apraxia). But as she says, “this situation is a privilege because it is a challenge.” Read about her experiences in her own words below:

Katrina’s story
“Not many children grow up having a completely bed-ridden uncle living with them. Or a little sister with Down syndrome and severe heart complications. Or a little brother who could hardly hear as a young boy and who has Apraxia; but, those who do have a unique privilege. Why, you might ask, do I use the word privilege? Doesn’t the word “problem” or “difficulty” or “burden” describe the situation better? No. This situation is a privilege because it is a challenge. And it is in and through challenges that one may grow. Because my family has had these challenges, we have increased in love for one another and have been unified into a solid family. My parents have made enormous self-denying concessions to do what is best for their extended and immediate family in caring for those with physical and mental needs. 

As a child, my parents encouraged me and my siblings to help our uncle with simple needs, and we loved it when we were able to help. When my little sister was born, I was so proud and excited to be able to help care for her; it made no difference to me that she had Down syndrome–she was my sister. My mom was and is very disciplined with her time and responsibilities and taught me do the same. The importance of diligence and staying focused on the task at hand was important in general, but also because we never knew what might come up. My uncle, at that time, needed help almost every two minutes, and understanding my little brother was sometimes very difficult because he couldn’t communicate well with words.

I am thankful for my parents’ example of self-denial, discipline, and hard work, and I was able to carry those qualities, though probably not quite as well, into high school and apply them when doing homework, training for basketball, and leading the honor society. I am also thankful for their example of and passing on of a positive attitude; devoting time and energy to our family members and others is not a bothersome burden but a joy when looked at with proper perspective. Yet with the demands of household responsibilities, it was often hard to stay balanced getting my homework done while finding time to help my uncle and still be patient with my little sister too. But I made it through and finished on top and now feel somewhat prepared for the challenges ahead. And not only have these situations made me stronger and more mature as a person, but they enable me to help and sincerely empathize with those in similar situations.”

You can learn more about the AACY and the CYP by visiting their websites.

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New partner, Schwartz Center, calls for nominations: National Compassionate Caregiver of the Year

Posted April 6th, 2015 by

Remember a time when you were in the hospital or doctor’s office, feeling nervous and anxious about a shot, treatment or diagnosis? And remember there was someone who made you feel safe, answered all your questions, or did something small that had a big impact?

It’s like what Ken Schwartz said during his battle with lung cancer, “These acts of kindness – the simple human touch from my caregivers – have made the unbearable bearable.” Those experiences inspired Ken to create an outline for an organization to promote compassionate care so that patients and their caregivers can relate to one other in a way that provides hope to the patient, support to caregivers and sustenance to the healing process. And just days before his death in 1995, he founded the Schwartz Center for Compassionate Healthcare.

For 16 of the last 20 years the Schwartz Center has been honoring extraordinary professional caregivers and teams who embody characteristics of compassionate care, like listening carefully, showing empathy, instilling hope and more. We’re proud to be partnered with them in their continued efforts. And you can be a part of it, too.

The Schwartz Center is calling for nominations for its National Compassionate Caregiver of the Year (NCCY) award, and you have until May 1 to submit your nomination.

Award-winning author Atul Gawande will present the award at the Kenneth B. Schwartz Compassionate Healthcare Dinner in November, which coincides with the Schwartz Center’s 20thanniversary. His work focuses on the difficult choices caregivers, patients and families face every day and the issues that can make it hard to provide high-quality, cost-effective and compassionate healthcare.

Do something special
If you have special healthcare providers in your life, honor them for their excellence by nominating them for National Compassionate Caregiver of the Year. It’s a simple but powerful way to show your appreciation for a job well (and compassionately) done.

“Receiving the Schwartz Center award … affirmed that rewarding feeling at the end of an encounter with a patient, when you see hope and relief in their eyes – it’s priceless,”  said Thea James, MD, last year’s Schwartz Center Compassionate Caregiver Award recipient.

More about the partnership
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the new alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

Working together, we’ll survey our members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, designed to let healthcare organizations measure and reward the compassionate care that doctors, nurses and other caregivers provide to patients and families. Jointly, we’ll create content to teach patients what compassionate care really is and how to ask for it.

Julie Rosen, executive director of the Schwartz Center, commented on the part PatientsLikeMe will play in evaluating compassionate care:

“As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

Share this post on Twitter and nominate your candidate for Caregiver of the Year.


Interview with Jim Atwell, Author of “Wobbling Home: A Spiritual Walk with Parkinson’s”

Posted April 4th, 2012 by

PatientsLikeMe Member Jim Askell, Author of "Wobbling Home:  A Spiritual Walk with Parkinson's"

Continuing our coverage of Parkinson’s Awareness Month, we’d like to introduce you to Jim Atwell, a PatientsLikeMe member who has been living with Parkinson’s disease (PD) since 2007.

A retired college professor, late-in-life farmer and weekly columnist for his rural newspaper, Jim recently published his second book, Wobbling Home:  A Spiritual Walk with Parkinson’s.  This meditation on illness and faith looks at Parkinson’s through the lens of Quakerism.  Why does this Quaker recorded minister view the disease as a gift?  What does he wish the public knew about Parkinson’s?  Find out that and more in our interview below.

1.  Tell us about your latest book, Wobbling Home: A Spiritual Walk with Parkinson’s.

Wobbling Home follows on this man of 73’s two definitions: I’m dealing with Parkinson’s Plus and for forty years I’ve been a Quaker (The Religious Society of Friends). My Quaker belief is that my life itself is a gift: precious, freely given, unearned. And further, that everything in my life is a further gift: health, abilities, family, valued friends.  I’ve earned none of these. They’re gifts. And after my initial diagnosis, I came to view Parkinson’s as a gift as well. It’s not one I would have chosen, but I accept it gratefully as the definition of the rest of my life.

Click Here to Learn More the Book on Amazon

And so the book is an attempt to share my attempt to harmonize this progressive disease with my own pilgrim’s progress as I wobble on toward home. I talk about Parkinson’s from the inside, dealing not just with the physical symptoms (lack of balance, shuffling walk, tremors, slurred voice, etc.) but with the perceptual, emotional, and psychological symptoms that recreate our interior lives. And that’s where Parkinson’s and my Friends’ beliefs dovetail together.

2.  In honor of Parkinson’s Awareness Month, what aspect of the disease do you think the public needs to know more about

The general public needs to know of the prevalence of Parkinson’s. Statistics now suggest that one in every 300 of us Americans suffer from it, with an ominous bulge in rural populations, perhaps because of careless use of pesticides and chemical fertilizers. Second, the public needs to know that, though their disease is chronic and irreversible, until its later stages most “Parkies” can live largely normal and often very productive lives.

Third, the general public (and many, many doctors) need to know how subjective Parkinson’s is from patient to patient. In our [local] support group, no two members have exactly the same mix of symptoms and medications. And fourth, the general public needs to know how important it is that they make a place in their midst for Parkinson’s sufferers, and for all with chronic, incurable diseases. To my mind, that’s what  “treating others as you’d want to be treated” is all about.

3.  You and your wife attend a support group that has both joint and separate meetings for patients and caregivers.  Tell us about that.

Care partners, female or male, are the unsung heroes of Parkinson’s. When our support groups meet, we first have an hour with Parkies and partners together. It’s a how-goes-it session, with each person present saying what the last two weeks of dealing with the disease have been like. Members in each group often learn surprising things about their partners’ dealings with a disease they truly share.

In the second hour, the groups separate. Care partners can then talk together about their own challenges, frustrations, and manners of coping with someone increasing debilitated, both physically and cognitively. (From what my wife tells me, a good amount of healthy venting goes on.) Meanwhile we Parkies are trading notes across the hall. Talk among us is largely of symptoms: who is having plumbing problems, who is dealing with hallucinations, who is frustrated with his GP or neurologist’s seeming lack of understanding of what’s going on INSIDE her or him.

Our group is largely men with a few women; the [partner] support group is largely women with a few men. (Initially we thought we’d have to have an all-men’s support group – how else to talk freely about plumbing problems and the like? We needn’t have worried a moment! Turn out that we’re all rowing the same boat.)

4.  What kind of role does PatientsLikeMe play in your life?

PatientsLikeMe is an invaluable aid to me, and I recommend it to everyone in our group. In fact, it fulfills the same great needs: for good and reliable information but, perhaps more important, for a sense that I’m not alone with Parkinson’s challenges. God bless PatientsLikeMe, its staff, and its work!


How Much Do You Know About Autism and IBS?

Posted April 22nd, 2011 by

“When you have a child with special needs, you really start to feel like you’re constantly the squeaky wheel as you advocate for your child. After a while, you start to wonder…’is it me?’ But I’ve already found several other parent advocates who are going through the same thing.”

Autism Caregiver

It’s Autism Awareness Month as well as IBS Awareness Month! Now that PatientsLikeMe has opened its doors to any patient with any condition, it’s amazing to see how many patients have joined our site in such a little amount of time. As we continue to add new members and conditions daily, helping us to expand beyond our recent milestone of over 100,000 members, here are some facts about autism and irritable bowel syndrome (IBS) from our members.

Autism

Membership

  • PatientsLikeMe already has over 100 members with autism, even though autism patients and caregivers could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

What are the major symptoms?

IBS

IBS

Membership

  • PatientsLikeMe already has over 270 patients with IBS, even though, like autism, IBS patients could only join PatientsLikeMe starting at the beginning of April.

What are the top treatments?

  • IBS patients are using more than 600 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, lifestyle modifications, therapies, etc.
  • The top lifestyle modification reported by our IBS patients is Rest, while Stretching is the number one exercise cited.
  • The most widely used prescription drugs reported by IBS patients are Duloxetine (Cymbalta), Pregabalin (Lyrica) and Tramadol (Ultram).

What are the major symptoms?

PatientsLikeMe member afleishman


It’s been two years!! ALS Community Report

Posted March 17th, 2008 by

PatientsLikeMe was born of a passion to provide the best tools for patients to participate in their own care, share experiences and change the way medical research is done.Thanks to our members and the dedication of our growing team, our first community, ALS, has now been open to the public for two years! The community includes over 1650 patients, the U.S. members represent over 4% of all the ALS patients in the States.

Over three quarters of our members have entered substantive information about their treatment history and status. Each time a member adds information, that information benefits how other people care for themselves and heightens how we as a community contribute to medical knowledge and drug discovery.

Already we have published exciting findings from our community. For example, hundreds of ALS patients completed Paul Wick’s survey on Excessive Yawning and the results were published in a psychiatry journal (Acta Psychiatica Scandinavica). Another exciting development in ALS is first real time drug study – on the use of Lithium in ALS. More published and presented research will soon be featured on our blog and in a new section on the site. Each project demonstrates how we, as a community, can conduct research quickly and easily to accelerate the pace of gathering and disseminating new knowledge. SO THANK YOU.

Lithium Re - Screen shot

To show you how the research process works and to celebrate our second anniversary, we have put together a report on our ALS community. In it we observe that the community is a good one to study in that it looks a lot like the ALS patient population at large. As is true for ALS generally, there are 3 men for each 2 women in the community and mostly sporadic cases (8% hereditary, 92% sporadic). And, PatientsLikeMe members experience all types of onset with the most common being leg and arm onset (39% and 37% respectively). The only real difference is that site members are a little younger than the average (48.4 at onset on the site compared to 55 generally). In the report, we also looked at how different ways to better understand ALS and connect patients. In the figure below, we look at the relationship between age at onset and onset type. Separating each age group, we see whether different types of ALS present themselves at different times of life. This can contribute to scientific understanding of the disease. Arm onset appears to affect slightly younger people than bulbar and leg onset. Also, when each number in the chart is a link on the site, it will help you locate others like you and of interest to you. See the next figure. Figure 1 We also report early stage research of our own. Specifically, we look at how patients are utilizing health services and how our members with different types of onset are doing over time. One surprising finding is how long some people report between experiencing their first ALS symptom and receiving a diagnosis. In the figure below, the most common length of time between onset and diagnosis was 12 – 18 months. There are also a number of patients who did not receive a diagnosis for several years. We are going to do some more research into these results.
figure2.png

Lastly, we begin to look at how ALS differs by onset. We see from our user reported Functional Rating Scale that bulbar onset patients experience a faster decline than users with arm or leg onset. People with bulbar onset experience the same level of decline in 8 months as leg and arm onset patients experience in 16 months.

Through member participation, we are gathering the information we need to better understand the course and characteristics of ALS. At the same time, we are creating methods to use patient supplied data to discover and evaluate the effects of new possible treatments. If you are an ALS patient or caregiver, please take a look at the full report (Note: you must be a registered user).

PatientsLikeMe member JeanaFrost