By Janet Mills
Telling long-time friends about my diagnosis of CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) was tough, and a number of tears were shed in the process. Once they accepted what was happening with me, they of course wanted to help. That’s what friends do.
At this point in my disease progression, I am fortunate to be able to still do a number of the things I need to in my daily routine, such as cook, shop, do laundry and clean…if I have to (I abhor dusting!). Since I no longer work, I use my energy on my good days to get these tasks done. On my not-so-good days (I call them “Couch Days”), I let things go, which is okay. I’ve learned that “things” can often wait.
There are a few points I have made to my friends that they can do to make things easier for me. I’ll share a couple of them here in hopes the ideas can help others in a similar situation.
Please don’t call me before 9:00 AM.
An early riser I am not. My good friends know this and don’t attempt to rouse me early unless it is urgent. One of my persistent symptoms is fatigue, and I sometimes sleep 10 to 12 hours a night. On Couch Days, I may stay in bed till noon. When we plan something fun, such as a meal out or a short trip, my girlfriends know that “breakfast” is best at 11:00 AM and rarely does a flight anywhere leave before 10:00 AM. They know I can rally when necessary, but that usually requires a nap or ends in an early bedtime.
Know where to find my medical and insurance information.
My friends know that the basic information about my diagnosis is on the medical ID bracelet I never leave home without. This is especially important because people with CADASIL have a high risk of stroke. Yet if we experience ischemic stroke, we cannot receive the typical treatments without risk of cerebral hemorrhage. The blood vessels in our brains are compromised. My friends will be my advocates with medical professionals if they happen to be present when/if I have a stroke.
These women also know to look inside my purse for my insurance information and more advisories for a CADASIL patient, such as an emergency phone number for the regional stroke center where someone on the stroke team will know about CADASIL. A list of the medications and doses I take are right there in my purse also.
Call my husband.
Most of my girlfriends know him personally, and if his cell phone number is not on their own phones, they know he is on mine and can call him if something is happening to me. My husband and my oldest daughter are also listed as “ICE” (In Case of Emergency) numbers in my phone. Paramedics and other first responders know to look for the “ICE” listing in a patient’s cell phone. I highly recommend that everyone, rare disease patient or not, have primary and secondary numbers in their cell phone under “ICE.”
Stay with me.
That pretty much goes without saying with good friends, but even if I look like I am fine, later on after a health incident, I may not be. Or I may fib and tell you I am okay and you can go home. Don’t believe me. I may honestly not be in my right mind, and even if I insist, I probably shouldn’t be left alone. Until my husband or other family member can be present, at least one person needs to remain with me. Take turns if needed.
Remain my friend.
The best ones never forget about you, even when you worry them or sometimes act a little different than usual. A rare patient’s “usual” or “normal” has changed significantly since her diagnosis. Don’t let that scare you off. She needs you now more than ever.
“It is not so much our friends’ help that helps us as the confident knowledge that they will help us.” – Epicurus (341-270 BC) Greek philosopher
About the Author
Janet Mills is a CADASIL patient and a trustee of CADASIL Association. She is active in several patient support groups online. Janet worked as an elementary school teacher for twenty years and is now on medical retirement. Her previous published writing credits include romantic contemporary and historical fiction. (www.janetmills.net)