My view from the plane
Sometimes it’s hard to find people who know what they’re talking about and can understand exactly what you need. When you have CMT it’s pretty common to hear people say, “I had to teach my doctor because he had no idea!” or “It’s so frustrating to see the doctor sometimes because they’re supposed to know how to help me and they don’t!”
I was fortunate enough to be able to travel 800 miles to Iowa City to see a team of people who are dedicated to knowing as much about CMT as possible. I finally met people who knew more about my disease than I did.
The University of Iowa Hospital has this wonderful clinic called “The CMT Clinic” where they offer a clinic day every Thursday.
What’s a “clinic day”?
To put it simply, a CMT clinic day is when a multidisciplinary team of doctors, physical and occupational therapists, orthotists, genetic counselors, and nurses all come together on one day to explain and address your CMT case. To say it in even simpler words: It’s amazing.
Let me tell you about my day
Driving with my Mom and brother from Cedar Rapids to Iowa City Thursday morning.
No matter how hard I try, I always run late and this was no exception. Luckily, you can choose the start time of your clinic day, 8 or 8:30. I elected for the 8:30 time slot…
…We checked in about 8:45.
Due to the construction happening around campus and the Children’s Hospital, the parking deck ramps were a little hard to find. Thankfully, Meghan stayed on the phone to guide us to our destination.
Just a heads up: The hospital is big! It’s not tall, but it is spread out. There are plenty of signs to follow though, so you don’t have to worry too much about getting lost.
So, after checking in and filling out the last bits of paperwork (before your appointment, you’ll receive a packet of papers that you’ll need to fill out), I had the privilege of being weighed for the first time in about ten years. This was probably the highlight of my day… because every woman loves finally knowing how much weight she’s really gained since college.
If you’re in a wheelchair like me, you’re weighed on this cool scale that has a ramp! You’re weighed together with the chair, and then you transfer to another seat so the nurse can weigh just the chair. From there it’s basic math to figure out your actual weight.
See? I’m just soooo happy to know my numbers.
You’ll then be escorted to the room you’ll be in for the rest of the day. Our’s was spacious with recliners and a sink!
Depending on who’s available at the time, because this same group of people will be taking turns meeting with other CMT patients, your day might be a little different from mine. While I was there, I said hello to three friends (one of whom I knew from Facebook and met her in person for the first time!) and saw another family in the waiting room.
After you’ve settled in, you’ll meet with Dr. Shy and his Fellow Doctor for a few minutes. Next, you’ll be introduced to the genetic counselor, Tiffany worked with me, who will give you a brief explanation on what to expect during your visit. As this is a teaching hospital, be aware that they will probably have 2-4 med students shadowing them. They won’t be with you the whole day, but if you’re uncomfortable for whatever reason, just let them know.
While speaking with the genetic counselor, you’ll be asked about your family history, if you have any questions, and what is the #1 thing you’re looking to get from your visit. My goal was to determine my exact type.
From that point on you’ll probably get a nerve conduction test done (Don’t worry! It’s not too bad when the person actually knows what they’re doing!), you’ll meet with the occupational therapist (Rachel gave me some helpful info!), the physical therapist, the orthodic guy (I met with Tim from Hanger), and have an hour or so for lunch somewhere in the middle of all that. You’ll also get a chance to meet with a representative from the Muscular Dystrophy Association (MDA).
Nerve conduction test
Me with Rachel
Follow the people to the food trucks!
Cool sculpture on campus
By the way, Clinic Day also happens to be Food Truck Thursday… You’ll have so many options you won’t know what to choose! I would definitely recommend taking advantage of the food trucks and using the excursion as a chance to see some of the University of Iowa campus.
Toward the end of the day, you’ll meet with the genetic counselor again. This is where, if you’re not sure of your type, you’ll be asked if you want to get blood work done (eek!) to help determine your type exactly.
My terrified self when they asked me for blood.
I survived! It was still pretty weird.
If you elect not to do the blood work, she’ll discuss what type you’ve been observed to have and why they think that’s your type. I chose to get a more definitive answer with the blood work as it appears I may have one of two types! Who knew I’d be so complicated?
Other topics of discussion might be what you can expect in the future as CMT is a progressive disease, family planning options, and you’ll have a chance to ask any other questions that weren’t addressed before.
You’ll then wrap up your day by meeting again with Dr. Shy and he’ll go over the reports from everyone who worked with you during the day to make sure all your questions and needs have been addressed.
Me with Dr. Shy
In case you’re asking, “Where can I go for a clinic day?”
That’s a great question! If you have CMT, you can take advantage of the Charcot-Marie-Tooth Association’s Centers of Excellence. We have several here in the United States and a few more across the globe.
A map of the CMT Centers of Excellence
If you do not have CMT, but another type of neuromuscular disease, reach out to your local MDA organization to see what resources may be available to you.
- Go with your support team. The day will be long and can be overwhelming at times. It really helps to have another person with you, especially for your first visit.
- Go with a prepared list of questions. I went with several. Some of the questions were mine and some were from family members who couldn’t go with me. This can help calm any nerves and really helps you focus on what you want from your visit.
- Take water!
- Some of the hotels in Iowa City have a hospital discount that you can use when you book directly with them.
- If you’re like us and don’t mind the quiet or the half hour drive, we stayed in Cedar Rapids and saw many cornfields.
- If you’ve had any sort of testing done before, try to bring a copy of the records with you or make sure to get them sent in.
- This is more of a suggestion, but if you can participate in any research studies or trials, be open to doing so. I donated some of my blood to help Dr. Shy with his studies.
Have you ever been to a clinic day? What advice would you offer? If you’ve never been to a clinic day, would you be interested in going to one?