Mark Tarnopolsky, MD, discusses how caregivers and support systems can shape daily life for people living with Pompe disease.
Transcript
So caregivers are invaluable. Most of the time.
So clearly, from a functional perspective, a loving spouse, for example, may be there to assist getting in and out of the tub. Some people don’t have the money to afford, you know, a walk in shower. And, therefore, they rely on a spouse to help them in and out of the tub safely.
Some people require a spouse or a family member to help get on and off of the toilet, get safely in and out of bed. Often, family members will bring in pre-cooked meals. So, when there are good supports available, it’s, it’s really invaluable. And that’s often family, and sometimes friends.
For example, we had an individual with spinal cerebral ataxia type three, and it was his friend for decades who brought him into our clinic. He would go and read to him. His speech got to the point where nobody else could understand him except for her. You know, depending on what the situation is, friends and family are really critical.
On the flip side, sometimes they can be a pain in the butt. We’ve had, for example, a patient with myocardial disease, which is another type of glycogen storage disease. And her husband was not very supportive and made her go out and shovel the driveway, which is the worst thing you could do. She ended up in renal failure because she broke her muscles down so badly.
So, I guess the point there is, if you have a spouse or a family member that’s not being supportive, divorce them or, you know, don’t hang out with them.
