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One thing I learned from others with Pompe disease is that the last thing they want to concede is the need for a healthcare aide. That would mean that Pompe is taking over your body, and I’m here to tell you that is not the case. I know that many of us are still very independent, but things can get challenging when you have a busy schedule.

Read more about HCP Resources for Pompe

I have a friend who was in college and knew of a young lady with Pompe who was a new mother and had her first baby, and even though she was seen as a healthy female, she was still with Pompe. 

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I was given my first health aide through an agency my health insurance pays. I was in high school at the time. I don’t remember why because, at that time, I was still walking a little bit, but I was mostly doing everything on my own. I believe it was recommended after I was hospitalized. I just remembered her making my lunch and watching TV with me. And I remember telling my dad that I wanted to let her go because she wasn’t doing anything helpful. 

Not all of us need a caregiver, but if the time comes when we may need a little help. I don’t remember when exactly we decided to get back a health aide or what was the exact reason. I just remember it happened when we moved into a house. My dad was my caregiver throughout my teenage years, but as an adult, my dad felt like I would get better care from a female. Even though he didn’t mind caring for me, I was to the point where I could no longer walk and needed more help. Keep in mind I was a late bloomer, so once my body matured and the cycles started, and I needed more assistance with personal hygiene, my dad was not a fan of doing any of that, but he never complained.

I remember he would get a swinish look on his face when he would see menstrual blood, and I would joke with him because he’s a marine that fought in the Vietnam War. I know he saw plenty of blood, but he said it’s not the same thing. Perhaps he’s right. I do, however, remember complaining about him doing my hair and not knowing what he was doing. 

So, I got my first real caregiver, and she worked out perfectly. I definitely needed the caregiver, and I know it helped my dad as well. But for anyone that is considering getting a health aide, the process of doing so is pretty simple. You contact your case manager for your medical insurance and express your reasons for needing the extra help, you may need a letter from your doctor, of course. The letter would state your medical condition and the reason you need a health aide. Then your case manager will find an agency that covers your medical insurance. 

The agency will sometimes send someone to discuss your needs and talk to you before finding you a caregiver, but some agencies just talk to you over the phone to discuss your needs. The timing is usually a few days in finding someone. Keep in mind that you can always call to get a different person if you don’t like the one they gave you. 

I want others to know that needing a caregiver is nothing to feel bad or embarrassed about. And it doesn’t have to be permanent; you can have one just for a short amount of time. Many people get a health aide after a big surgery just until they can fully recover and get back into their home routine. In my case, I will need a caregiver permanently because I need help with almost everything.