Ten things I wish someone had told me…

…when I was first diagnosed with FSHD (infantile onset)

by Archer Sverdrup, St. Louis, Missouri

1. Progression is unpredictable. Sometimes you may go a year with only minor progression. Sometimes every couple of months another decline will happen. Once you stop trying to predict progression and just focus on living your life you will be happier.
2. Don’t wait to use mobility aids if you need them. Using a mobility aid can allow you to have more function because it will reduce pain and mitigate weakness that may be preventing you from fully participating in life. Mobility aids are freedom. There are many different types including braces/orthotics, wheelchairs, canes, rollators, etc. A physical therapist educated on neuromuscular disorders can help you figure out the best one for you.
3. A good pain management regimen is a must. Don’t ignore or try to push through pain. It will only make things worse. Utilize as many different strategies as you need. There is no shame in seeking help from a pain management specialist too.
4. Occupational therapy can be an amazing tool. They can come to your house and evaluate you living space so that they can make suggestions on how to make things easier. They can also suggest tools and techniques to help you be able to continue to engage in hobbies and activities of daily living.
5. Don’t let other people convince you to push yourself past your limits. It will wear on you, both physically and mentally. Eventually you will burn out. Staying within your limits is vital to sustaining being engaged in life.
6. Breathing issues may become a thing. Make sure you are educated on proper protocols for managing breathing issues in FSHD because the wrong management can be deadly.
7. Most doctors won’t know a thing about FSHD. Being educated on everything about the disease will be your biggest tool. Having a doctor who does know FSHD, and who can be a point of contact for other medical professionals you see, can be super helpful.
8. Getting enough sleep, food, and water is very important. High protein meals are ideal.
9. Not everyone will accept this part of you. And that’s ok. The ones who really matter won’t care and will just want to help in any way they can. Those are the people you want in your life. If someone can’t accept and accommodate this part of your life, then they are not meant to be in your life.
10. Take care of your quality of life. Don’t make yourself miserable trying to make others comfortable. If a certain pain management strategy helps lower the pain enough to get out of bed, use it. If a mobility aid allows you to be present with the ones you love, use it. Don’t pay any mind to those who may question or judge you. Do what you need to do to be happy.