Things People with PCD & their Caregivers Wish they would be Asked

Written by PCD Smiles on 26 February 2020. Posted in PCD Awareness.

Back in 2018 for Rare Disease Day we asked the PCD (primary ciliary dyskinesia) Community to tell us the things that they wished people wouldn’t say to them. That whole discussion within the PCD community lead to us to ask for 2020’s Rare Disease Day,

“What are some things that you wish people would say to PCD patients and their caregivers?”

Here are their responses. Some closely related responses may not have been included in this list.

- “I’m going to the grocery what can I pick up for you, or do you want to ride along?”

- “Can I come do your laundry for you?”

- “What can I make you for diner tomorrow night?”

- “How are you today?” - Just check on them.

- “Call me anytime for anything.” - And then be available.

- “Let me watch/sit with the kids/your PCDer so you can have a break.”

- “I’ll bring you a coffee to the hospital.”

- “How can I help raise awareness for PCD?”

- My number one wish; “How can I help you today?”

- “Can I help you carry something?”

- “Is there something I can do to make your day easier?”

- “I'm bringing you food so you don't have to worry about cooking for your family tonight!”

- “”Tell me about your disease!” - Don't stare or guess”

- “And #1 thing from some of my family... Say nothing! (Cause it's never positive)”

- “I'm disappointed that you don't feel up to doing XXX that we had planned for today. Is there something else you would like to do instead? Would you like me to come over and keep you company if you don't feel up to doing anything?”

- “As an PCD adult, these are my wishes:
       * “Can I pick up your prescriptions for you?”
       * “Show me how to sterilize/prepare your nebulizer/saline rinse and I’ll get it set up for you from now on (!)”
       * “What can I pick up while I’m at the store?”
       * “Please let me help wash the dishes, sweep the floor...”
       * “I’ll bring some prepared foods over that you can microwave.”
       * “I’ll give the dogs a walk.””

- “So basically, anything around the house - cleaning, laundry, cooking, running an errand. Is what I wished they’d ask me.”

- “A small but big thing - if someone asks if they can do something for me, I often say no, thank you (Pride, not wanting to seem weak). When someone doesn’t ask but says ‘let me do this for you, I want to,’ I’m more likely to say yes. Being helped is hard for me and I suspect hard for others too.”

- “I totally agree with the point about being helped is hard to accept. For starters, even though I've lived in this body for 64 years, it's still hard to realize sometimes that I can no longer do everything every day. Some days, it's a real accomplishment just to get dressed! So it helps a lot if someone says, "Let me do it for you," or "Let me help." I've finally been learning to accept when people just jump right in (out in public, total strangers!) to help me. Brings tears to my eyes every time, and I always, ALWAYS say a heartfelt thank you, and also that I hope someone is there for THEM someday, if they ever need it.”

- “I got my flu shot! I had the kids use hand sanitizer before we came over. I cleaned the snow off your car.”

- “If you're feeling up to a visit, I would like to come hang out🤗”

- “I’m not feeling 100% today, but know we were supposed to hang out. Do you want to reschedule?”

- “I should preface this with how many people will get together with us and say, “Oh! Don’t worry! We just have allergies, or the sniffles.” and we end up in the ER with pneumonia”

- “You are doing a great job advocating for your son. What can I bring to you at the hospital?”

- “How can I help keep your kids healthy when they are at my house?”

- “Do you want me to check in on your health proactively or wait for you to bring it up? What's your preferred way for me to stay updated on what's going on/how involved do you want me to be? What are you okay with me sharing with others we mutually know?”

- “I'm a mum "Do you need someone to talk with? Remember that keeping all your grief inside is not of any help, especially for your kid"”

- “It’s ok if you are not up to doing normals things, I get that you have bad and good days.”

- “I understand if you have to reschedule.. again”

- “Let’s me sit with you (or your child) while they do their treatments”

- “I know the medications, especially the steroids, change your temperament, is there something we can do to make today easier for you”

- “We are not feeling well, let’s reschedule so your PCDer won’t catch my cold- I know it’s a much bigger deal for them to get sick”

- “From my boss - I understand how much this affects you, take the time off to be with your child in hospital, we will sort out cover........ if only 😔🤞”

- “I'm a PCDer...if anyone wants to do my laundry let me know 😂😂”

- "Where can I donate money towards PCD research?"

- *When going to someone's house* "Is there anything I can do before your arrival?" ... no candles, plugins, fires, Febreze, strong scents, open windows on poor air quality days, etc...”

- “Can you tell me more about PCD? It sounds more complicated then just a runny nose.”

- “Understand we cannot always do all the same things you do. Try sometimes when planning to allow for activities that are all inclusive or understand that we are not being flakes but actually have legitimate reasoning for not going.”

- “For my little PCDer I’d like people to ask

       * “Would you like to wipe your nose?” Or “is it ok if I wipe your nose?” Rather than accost them with tissues.
       * “Want to have a play date? Want to try again?”
       * “Can I hang out with you in the hospital? I’ll bring a phone charger...
       * “I’m available for a ride... I’ll pick up your other kid from school, they can hang out till you get home.”

- “Spot on with the I’m going to the store one. With my husband no less. I always ask him when I go. I finally said this year I wanted him to ask me EVERY time he goes.”

-“ You laundry one made me laugh. “Why yes, I’d love for you to come over and clean my entire house.” 🤪”

- “Do you want company running errands?”

- “Oh this got me teared up. My son was sick for 5 weeks prior to and after Christmas. I’m a single mom with a great group of friends and family and my sons father is wonderful...but nobody gets it. Any of these things would be amazing. ESP “can I pick you up anything?”, “Meds?”, “Or would you like a break for a couple hrs.” Makes me sad because it’s so simple but unless you have been there.....”

- “I can’t even imagine what this is like for you; I am your friend and I’m here to help - name a date in the next two weeks where I can give you a night off...or drop off a meal. - I won’t take no for an answer. XO”

- “Yes I know what PCD is and not be corrected with "Do you mean COPD?"

- "You responses are great ones. Just understand when I am tired I just need rest...not a lot of questions and advice I have been given a thousand times before.”

We at PCD Smiles understands how hard it is for our fellow PCDers and their families to navigate the ups and downs of the PCD Life. Simple little acts of kindness every day can really go a long way to improve the life of your loved ones fighting PCD. Above all the best thing that you can do for the PCD family in your life is to ask what they need; never assume, and never tell them what they need. Oftentimes it just the simple need of an ear to vent to and a shoulder to lean on. Check on your PCD family today. You just never know what a blessing that may be to them.

Happy Rare Disease Day 2020! Are you wearing your blue jeans today? “Hope it’s in my genes!”

#PCDsmiles #PCDstyle #PCDsmilesCookbook #PrimaryCiliaryDyskinesia #RDD2020 #RareDiseaseDay2020 #SmileEcove