A walk in my shoes: A Caregiver’s Ongoing Journey

The following is a very brief overview of my wife’s journey as a caregiver.

Me, a caregiver!

Since December 2009, my life has been like trying to walk a tightrope in stilettos with one broken heel, holding my head up high with as much confidence as I can manage.

I am a caregiver, a mother of five children, a wife, a friend, a volunteer, and full-time worker who supports my family. I am also the sole income earner. On most days, I am physically and emotionally drained—and although difficult, I try to find the courage not to give up.

The life-changing diagnosis of acromegaly has been taxing on my relationship with my husband and our family. My role to my husband as a wife, friend, and partner have been blurred with my role as his caregiver.

Our journey begins

Although Dan was diagnosed with acromegaly in December 2009, our journey began after the birth of our daughter in September 1995. At that time, Dan was awkward: he had gained a lot of weight, which we attributed to stress. In February 1996, Dan lost the weight he had gained but did not look well. It took some convincing, but he finally agreed to see our family doctor. She confirmed his suspicion—his fear—that he had what we thought was age-onset Type 2 diabetes.

Being an Olympic athlete and knowing the best way to fight this disease, Dan took on the task of getting fitter. He cycled every morning. He ate a diabetic diet. We, as a family, took on a healthier lifestyle. He did everything one should do to keep this condition at bay.

Over the next few years, his diabetes became more acute, controlled through diet, then also through light medication, including Metformin. There were signs that things were a bit different, but we attributed the changes to diabetes. He had mood swings, anxiety, excruciating joint pain, sleep apnea, and hypertension.

In July 2004, Dan was not feeling well. He had flu-like symptoms and just could not keep anything down. I went to work as usual, but returned home at lunch to check on him. Despite our best efforts to replenish his electrolytes, he could not keep anything down, so we took him to the hospital.

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Patient Stories – share yours with the community!

We’re currently collecting answers to questions that paint a picture of a journey with acromegaly. It’s our hope that these patient stories will help bring awareness to the struggles of this rare disease and the long road to diagnosis. The stories may also help bring patients together and provide a sense of comfort in the fact that we are not alone. Sharing these stories may also help undiagnosed patients recognize their symptoms and get diagnosed faster.

If you’d like to share your story, please email your answers to the following questions (as many or as few answers as you’d like) to acromegalyottawa@gmail.com.

We will compile your answers into a narrative and send it to you for final approval before it is posted. It is your choice to identify yourself, or tell your story anonymously.

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Acromegaly Support Conference 2019: Managing Pain

The second presentation at the 2019 International Acromegaly Conference, held March 20-22 in New Orleans, was an illuminating and—judging by the number of questions asked by attendees—popular presentation on acromegaly and pain, presented by Dr. Angel Rigueras. Dr. Rigueras is a physiatrist, specializing in pain and pain management.

Pain is the physical, psychological, and spiritual reaction to an injury and has a tremendous impact on a person’s ability to function and their quality of life. Those of us with acromegaly are all too familiar with the pain caused by the bone growth and soft tissue swelling from the excess growth hormone and by the pressure of the tumour on structures within our heads.

Dr. Rigueras explained that acromegaly patients’ number one pain is headaches, generally caused by changes to the neck, jaw, and upper back. (Side note: did you know there are 400 different types of headaches?!) This is followed by arthritis and osteoarthritis, caused by joints changing—the unnatural shape causes the joint to stop working properly, thus causing pain. Carpal tunnel pain is also common. Adding to the problem is the prevalence of obstructive sleep apnea, which disrupts sleep, leading to a lower pain threshold.

So what is chronic pain? It’s defined as pain that has lasted for more than six months, generally having significant psychological and emotional effects and limiting a person’s ability to fully function. Dr. Rigueras stressed that a patient’s medication levels and condition must be closely monitored. If chronic pain is not treated with the proper medication, a patient may develop debilitating pain. If the medication is not increased or changed to reflect this, it may become impossible for the patient to be mobile, which could lead to the de-conditioning of muscle groups, repetitive testing, and perhaps psychological deterioration. Quick treatment is key to getting the pain under control and starting rehabilitation.

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