What is Lewy Body Dementia? How It Affected My Life

By Anita Heidema
www.anitaheidema.com

As a mindset coach, wisdom sharer, and seeker of information on the brain I don’t know how Lewy Body Dementia eluded me. I teach others to reach their true potential in life and business, and yet my mother’s health was declining and a misdiagnosis lead to her death.

LBD is not a rare disease. It affects an estimated 1.4 million individuals and their families in the United States. Because LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, it is currently widely underdiagnosed. Many doctors, other medical professionals, and caregivers are still not familiar enough with LBD.

https://www.lbda.org/ is the US organization with much information.

We really don’t know the statistics on how it affects us in Canada; I am still searching. I would love to get more information on research in Canada and share with our growing community here, so more people can be helped. If you are a caregiver, family member, or health professional and you have any insights to share, please reach out to me at the end of this blog, by email, or my Facebook group. And let’s keep in touch.

We know LBD is a common disease. We also know it is often misdiagnosed; but what many do not realize is that it’s the misdiagnosis that can be deadly if not noticed in time.

This is why my story of sadness, grief, and guilt has led me to create a foundation in my mom’s name to help others learn more about Lewy Body Dementia. I had to turn the painful loss of my mom into something meaningful. This is about LBD awareness and spreading the word to empower others so they might be spared what my mom and I had to endure.

Proceeds from my own book sales, Vitality Knocks, go towards Lewy Body and The Fenna Heidema Lewy Body Dementia Foundation. If you’d like to check it out, you can find it on Amazon.ca, I C Publishing, and my website.

In the near future, I will be announcing some special events and a walk across Canada to educate and raise awareness. I am in no way a medical professional or want to be. Given what I’ve been through though, I simply want to help people ask the right questions and recognize the possible symptoms that otherwise might go unnoticed and unreported.

We all try to give our best, and I acknowledge that this includes the health professionals who work hard to do their part as well. It takes us all though. We have to be partners in our own health care.

Unfortunately, six years ago my mom was diagnosed with Alzheimer’s. I was noticing the decline in her memory for a few years, not knowing if it was old age or something else. I myself have forgotten things, so at the time I thought this might just be a natural progression. My mom was in her early seventies.

As time went on, my mom’s decline led to a serious fall. With this fall, I moved her into my home and was able to get her to a doctor to help with her condition. I started to ask questions of the doctor, “Could my mom have Alzheimer’s?” I asked. I was starting to get really concerned and, due to client confidentiality restrictions, it was a bit difficult to get a proper answer since my mom was still deemed fit. With much persuasion, I was able to get an Alzheimer test scheduled for her. My mom wasn’t really sure what was going on and my heart was breaking; but I needed to know what was happening and how I could help her.

It was conclusive that she was at a later stage of Alzheimer’s. I was told that I had to come to terms with this illness. I was in charge and had to make sure she was not to leave the house or drive. The responsibility was on me to care for her and protect my mom, and then they sent me on my way. With my mind in a blur, I wasn’t sure how I was going to figure this out. As a single mother of two, running my own business, I had no information and next-to-no time, let alone experience on how to deal with this.

Amidst the flurry of doctors’ appointments, looking for resources to help my mom remain safe, and get her medication—hopeful for some improvement and good years still to come—it was decided that I had to put her in Senior Living Centre for Dementia. After much turmoil and heartache, I did feel that the care, stimulation, and safety the centre provided, was the best decision.

Within two months of my mom being in the nursing care facility, she passed away. What precipitated this time still tears me up. After a few weeks of getting medication for Alzheimer’s, she was starting to lose her motor skills. When she was sent to the hospital, a Neurologist visited her and realized she had Lewy Body Dementia and not Alzheimer’s. The medication she’d been given sped up the mobility decline to LBD and she wasn’t talking, walking, or eating. It was too late to stop the medication and reverse the damage . . .

My story is not one of blame but more about helping someone else in their journey. We need to be advocates of our own health and that our families and friends. Where possible, we need to strive for prevention. We need to look for answers and for symptoms that don’t make sense and share them with health professionals. For example, with LBD there are symptoms of Alzheimer’s (memory) and Parkinson (motor skills) as well as hallucinations.

Lewy Body is a deposit on the brain that causes many problems similar to Alzheimer’s and Parkinson’s. You can learn much more about this debilitating disease on my Facebook group. I continue to add important information from the professionals, and knowledge from other’s experiences, so we can all be a part of the solution—less suffering!

Wouldn’t it be wonderful to have a cure? There is talk of some treatments in California I have heard about. For now, we need to spread the message and take care of our health.

• Talk about LewyBody Dementia and that is so often misdiagnosis as Alzheimer or Parkinson, just as it was with Robin Williams.
• Purchase one of my books (Vitality Knocks Amazon Best Seller) as a gift for yourself or for a friend or family member. As mentioned above, proceeds from my book sales go to The Fenna Heidema Lewy Body Dementia Foundation.
• Share this blog and my messages, and together we might save a life.

Let’s do everything we can to be advocates for ourselves, for a better tomorrow for all.

I hope this message has helped you. And remember, I would be so honoured to hear from you too.

Here’s to healthier lifestyles and a more meaningful and engaged community that is able to provide support and information where it’s needed the most.

Anita Heidema
www.anitaheidema.com