Tag Archives: Disease

Caregiving Blogs – February 2016 Highlight

Posted by Jeanne Lowry on February 23, 2016 under Caregiver Corner | Be the First to Comment

We have some great caregiving blogs to share with you this month. They’re diverse and each of them is relatable in its own way. And all of them is trying to help out those who may be affected by their diagnosis or provide information in general.

Swallow, My Sunshine

Swallow My Sunshine should be read from the beginning. This blog is written from the perspective of a mom with a daughter whose diagnosis took years to fully determine. The daughter is well now, but there are some scary moments when reading through the past posts. And the author, Debi Lewis, has a wonderful writing style – and she hasn’t even written up to the present day. She takes you on the journey from her medically complex infant who had heart surgery at 13 months, to her now 10-year-old daughter who is living for the first time without medical intervention.

Sharing My Life with Lewy Body Dementia

This blog has a very interesting perspective. It’s written by a man, “Silverfox,” who has Lewy Body Dementia, or LBD. He writes about his difficulties with the nighttime, with having the television on, with keeping his sense of self alive. It can be a depressing read, but at the same time it’s refreshing to learn more about someone who has faced the facts and is simply moving forward.

Huffington Post – Post 50

The Huffington Post is a very popular website – but did you know there’s a section for readers over 50? This “Post 50” section discusses issues relevant to adults in middle age and beyond. The majority of family caregivers are women over 50, and so these articles may just be the right mix. Today, for instance, the top three stories are about dating in middle age, how to find self-identity after the loss of a spouse, and an author’s decision to stop drinking. Keep in mind that it’s still part of the Huffington Post, and so there is a lot of “click-bait” happening, or sensational article titles that attempt to lure readers in. But overall, the articles are thoughtful and interesting.

Caregiving Blogs – January Highlight

Posted by Jeanne Lowry on January 14, 2016 under Caregiver Corner | Be the First to Comment

It’s a new year! Is one of your resolutions to read more? Blogs are a great way to connect to your community and get inspiration. Check out these blogs and sites that provide wonderful stories from various contributing authors:

BLOOM
BLOOM is a Canadian site that is more than just a blog. It’s a magazine, blog, e-letter and speaker series that speaks to parents and caregivers of children with special needs. The new stream of content is fairly steady because those parents and caregivers are often the ones creating the blog posts.

The MIGHTY
There has been some controversy about The Mighty (see The Cute Syndrome’s blog post for more information about the special needs community’s complaints), but clearly its 80 million readers must find it intriguing. This site gives a voice to those living with disabilities, disease or mental illness, and their caregivers.

alz.org|blog
Another platform for caregivers, but this site also publishes contributions from those who have Alzheimer’s Disease themselves. It also provides news about the latest Alzheimer’s research, along with keeping the community up-to-date on fundraisers and studies. While the site is sometimes updated as little as once per month, there is a huge amount of information and a backlog of great blog posts.

Caregiving Blogs – December Highlight

Posted by Jeanne Lowry on December 3, 2015 under Caregiver Corner | Be the First to Comment

As the holidays make everyone busier, it’s hard to find time to just settle in and read a few great blogs. But blogs can be the perfect length to read during a quiet breakfast, or during your public transit commute. Let’s take a look at a few of the blogs we’ve been reading lately:

Fifty Shades of Dementia
This blog is written by two British sisters about their parents, both of whom have had dementia for the past several years. Their mother just passed away in September, which they wrote about in a beautiful post. They manage to add humor into their posts, along with giving good advice while chronicling their journey.

The Cute Syndrome
Hillary is the mom and caregiver to Esmé, a four-year-old medically complex child. The title of this blog comes from Hillary discussing Ezzy’s condition with a friend, and how the doctors were telling her that her daughter had a syndrome. “Yeah, a cute syndrome,” came the response from her friend. Thus was born not only the name of the blog, but also the foundation to help children like Esmé.

Working Daughter
This site is not only a blog, it’s a community. The site is run by Liz O’Donnell, who has balanced being a caregiver with her other roles in her life. There’s lots of different resources on the site, and it is updated regularly.

Caregiving Blogs – October Highlight

Posted by Jeanne Lowry on October 8, 2015 under Caregiver Corner | Be the First to Comment

As we get further into fall, we thought it might be a nice idea to highlight a few blogs that you can bookmark to read as you settle into your favorite comfy chair with a mug of cocoa.

Noah’s Dad
Noah’s parents were surprised when their son was born with Down’s Syndrome. Noah’s dad, Rick, immediately started journaling their story. The blog is full of positivity and super-cute pictures of Noah. There’s lots of advice available for parents of children with Down’s Syndrome, other children with special needs and typical children.

Geriatric OT
This post hasn’t been updated in quite some time, but it still is a great resource for anyone looking for information about how to improve the lives of geriatrics, especially those with disabilities. There are lots of links to sites with great therapeutic suggestions.

Gastroparesis Crusader
Trisha Bundy describes herself as, “a proud mother, teacher, Gastroparesis Advocate, GJ Tubie.” Hers is less a caregiving blog and more of blog from a caree point-of-view. Even with the invisible illnesses Trisha struggles with, she maintains a positive attitude and her writing is very creative.

Caregiver Blogs – July Highlight

Posted by Jeanne Lowry on July 9, 2015 under Caregiver Corner | Be the First to Comment

Wow! We’re already well into summer, but before it passes us by, we’d like to take another moment to highlight a few caregiver blogs that we’ve really been enjoying lately.

The Cute Syndrome
Hillary Savoy decided to call her blog “The Cute Syndrome” because while she was discussing her daughter’s un-diagnosed genetic disorders and various syndromes with a friend, the friend commented, “yeah, she has a syndrome. A cute syndrome.” And the pictures of Esme on this blog are really very cute. Hilary has also written a book about her journey with Esme through the world of genetic testing that is available through her site.

The Purple Jacket
This blog is written by Chris MacLellan, AKA, The Bow Tie Guy. Chris was a caregiver of his partner, Richard, until Richard passed away in 2014. Now Chris helps advocate for caregivers. The story of him caring for Richard during his last days was told in the Sun Sentinel newspaper and has been nominated for a Pulitzer Prize.

Chasing Rainbows
Kate Leong’s tale is one of both sadness and hope. Her first child, Gavin, was born with some disabilities, exacerbated by bouts with both Botulism and Respiratory Syncitial Virus (RSV) while he was still under six months of age. Kate continued to write about Gavin and the therapy he received for his special needs, along with his younger brother, Brian – until Gavin’s death in 2013. Since then, Kate’s blog has focused on the grief and happiness that has come with her son’s death, and her new daughter Hope. While her current story is just as compelling as her past, her older blog posts about Gavin’s therapy may be helpful for those with special needs children of their own.

Caregiving Blogs – February Highlight

Posted by Jeanne Lowry on February 10, 2015 under Caregiver Corner | Be the First to Comment

A new month is here and we’d once again like to take a look at blogs that show us the compassion and grace that caregivers give to their carees.

http://jbones1961.blogspot.com/
Jane is the mother of Nicole, who is 20 and has a congenital heart defect and pulmonary arterial hypertension. She’s been writing for four years about her journey with Nicole, Nicole’s health issues and their life together. Recently, she started on a series where she remembers the days when Nicole was first receiving her diagnosis of pulmonary hypertension.

http://www.gavinowens.com/
It’s been over five years since Karen’s son, Gavin, passed away, but Karen and her husband, Adam, continue to give their lives to helping children with special needs. They’ve adopted three special needs children since Gavin’s death, with issues that vary from cerebral palsy to feeding tubes. While Karen hasn’t updated the blog recently, it’s full of lots of amazing stories about their journey as a family.

http://www.intentionalcaregiver.com/
Shelley Webb is a RN and has been a caregiver. She is the “Intentional Caregiver” of her site, which is much more than just a personal blog. It provides care to the caregivers and gives lots of advice. Shelley has other authors that contribute to the site, and has an extensive question section with lots of tips about how to handle various caregiver situations.

Do you have a caregiving blog that you’d like us to highlight? Let us know in the comments!

What is: Cerebral Palsy?

Posted by Jeanne Lowry on September 11, 2014 under Caregiver Corner | Be the First to Comment

Many caregivers out there are caregiving for children, teens or adults with cerebral palsy. And many caregivers of other individuals may wonder: just what is cerebral palsy?

Cerebral palsy is essentially a term for all disabilities that come from damage to the part of the brain that controls motor skills. It varies wildly in each diagnosed individual. Cerebral palsy is not a disease, it is not contagious, it is not hereditary and there is no cure. There is no way to prevent the disease as it is usually caused by an accident of some type. Regular prenatal checkups are always a good idea, but generally cannot prevent the types of accidents that cause CP.

It’s entirely possible that you could know someone for years and never know that they were diagnosed with cerebral palsy. And someone you think has CP could have a different disability entirely. Each person is affected differently, from a simple issue like hard-to-read hand writing to being fully paralyzed. Some people have trouble with speech, some have trouble with cognition, some have trouble walking, while some experience immense pain.

Because there are so many ways CP can affect someone, it’s hard to tell what they might be capable of later in life, with therapy. Physical and other types of therapy can make all the difference with CP and, in general, the earlier the diagnosis the better.

There is very little known about CP, unfortunately. There are some options available out there for helping beyond therapy, including stem cell transfusions, surgery and hyperbaric oxygen therapy (HBOT). While these may make movement and cognition easier, again, there is no cure. But many with CP are living very full lives. TotalHomeCareSupplies.com thanks their caregivers for all they provide. And a shout out to everyone showing cerebral palsy who’s boss!

Caregiving Blogs – September Highlight

Posted by Jeanne Lowry on September 4, 2014 under Caregiver Corner | Be the First to Comment

At the start of the new month, we’d like to take some time to highlight some caregiver bloggers. These bloggers are raising awareness of the difficulties their loved ones live or lived with and helping others to know they’re not alone.

http://caregivingelderlyparents.com/
“Sometimes it seems that no matter how much I do, I still feel guilty. How do we live with that juggling act? That is what I want to write about.” That’s how Dauna Easley describes her reason for blogging. Her co-blogger is Marky Olson. They have written a book together called “Caregiving for Your Elderly Parents.” They tell their personal stories with warmth and humor.

http://birtchbaby.blogspot.com/
Jill’s son John was born at just over 24 weeks gestation, making him a micro-preemie. At only a few days old, he experienced a brain bleed that gave him long-term disabilities. Through lots of hard work and John’s own determination, he walks with a walker and leads an almost entirely normal life. Every year, John, his family and his friends take part in a fundraising walk for other preemies. John has a very positive personality, and his little sister is a sprite!

http://alzheimersandmomblog.blogspot.com/
Karen was a caregiver to her mother with Alzheimer’s for years, until her mother passed away in 2011. Karen continues her blog to help other caregivers and past caregivers. In her older posts she shares the joys and struggles of caring for someone with Alzheimer’s. In her recent posts, she discusses Alzheimer’s support, life in Arkansas, and moving on from caregiving.

Do you write a blog or know of one that you’d like TotalHomeCareSupplies.com to highlight? Please provide us with a link in the comments. And if you’re a regular reader of any of these blogs, let us know and give them a shout out!

Caregiving Blogs – August Highlight

Posted by Jeanne Lowry on August 6, 2014 under Caregiver Corner | Be the First to Comment

At the start of the new month, we’d like to take some time to highlight some caregiver bloggers. These bloggers are raising awareness of the difficulties their loved ones live with and helping others to know they’re not alone.

http://www.robertssister.com/

Trish Hughes Kreis is the primary caregiver to her brother, who lives with intractable epilepsy. He was also recently diagnosed with Cumulative Traumatic Encephameylopathy. Trish kept her readers aware and informed throughout the process of getting the diagnosis. Trish also participates in a live chat once a month with Denise Brown of caregiving.com to discuss all things related to caregiving.

http://www.lovethatmax.com/

Ellen Seidman’s son, Max, had a stroke shortly after he was born and developed cerebral palsy. (It’s true, babies can have strokes.) Now Max is doing all sorts of things that the doctors told Ellen weren’t going to happen for her son. Reading about Max’s improvements is a joyful thing, and his younger sister is a ton of fun as well.

http://www.insidedementia.com/blog/

Martha Stettinius was a caregiver to her mother with Alzheimer’s for eight years, before her mom passed away. Now she continues to advocate and write for caregivers, sharing her experiences and what she wished she knew then. She also wrote a book, titled Inside the Dementia Epidemic: A Daughter’s Memoir, which we have pinned to our Pinterest board of Caregiver Books.