Surviving Covid-19 when you live with SMA

An extract from the diary of Carolyn Campbell-McLean

Dear Diary,

Day 1 – Feeling sick (sore throat, hot & cold, nasally) so took a RAT with support worker at 10pm. OMG double lines, it’s positive! Stay calm, it may be a false positive. Second RAT. It’s definitely (and quickly!) showing positive. Stay calm. We tell my partner, Steve. He thinks we are joking. No joke!

Day 2 – Very busy morning talking to GP, Pharmacy, support workers, uploading RAT result to Service NSW, Facebook messages and texts, rearrange work, contact my Support Coordinator. Contacted respiratory physio at Westmead Respiratory Clinic for advice. Keep on BiPAP, this will blow germs around the room so ensure support workers have good PPE. Very emotional and feeling sick with very sore throat, nasal congestion. Tastebuds are bland and appetite is low. 4 out 5 support workers are happy to continue my care with N95 masks and gloves (mainly the ones who have had Covid themselves). Glen 20 and Dettol everywhere!!! Support workers help me with manual cough assist. (compression on front and back of chest when coughing on the exhale).

Flowers dropped off from Mum & Dad, over 100 messages of support and text messages from loved ones made me feel better. Called taxi driver to pick up medication. Demazin Night and Day really helped dry up mucus especially before bed. Loads of water.

GP consulted with Respiratory Physician who said I didn’t need antivirals, WTF! GP agreed I did, and checked it wouldn’t clash with current meds. Started taking Paxlovid antiviral medication this afternoon. 3 tablets, twice a day. Works in two ways – stops the virus replicating in your system, and has an immune system booster similar to what is used with HIV patients. Large chalky tablets a little hard to swallow but you cannot crush them as they are time release. Drink lots of water to make them go down. Goal is to avoid hospital. “Swallow the tablets – avoid hospital” is my mantra.


A positive RAT result

My massive pills!


Day 3 – Healthy grocery delivery from my sister. Paxlovid is kicking in. Asked for viewing recommendations. Lots of YouTube. Wearing a mask while doing personal care and while support workers are in the house. Wearing a mask when come out of my study room at night to watch TV at a distance from Steve; “My Next Guest – with Dave Letterman” – George Clooney interview. George is awesome! Started “The Staircase.”

Day 4 – Sore throat just won’t go! Other symptoms are easing. Former support worker is a pharmacist and offered to deliver anything – “Yes please, bring throat lozenges!” Feeling sad and disappointed that I was so cautious for over 2 years, and now I have Covid! I have just returned from a weekend away in Newcastle, and a couple of people I spent time with also contracted Covid. It’s a bit of a mind bender this virus. Hope I don’t give it to Steve or my support workers.

Day 5 – Feeing better. The hardest part has been coughing and stuffy nose while on BiPAP at night. (minimal but challenging). Sore throat lasting. Starting to scrapbook and journal so definitely on the mend. What a strange experience! So hard physical distancing from my darling Steve.

Day 6 – Scrapbooking Day. Surprise delivery of a care package from my darling friend Beth! Started cleaning the house, must be feeling better!

Day 7 – I’m still testing positive on the RAT but feeling good! Steve still clear on the RAT. Relaxing day at home. All antiviral meds finished. Very proud of myself for beating the dreaded COVID! And not passing it on to Steve or my support workers! Goal to avoid hospital achieved.

My care package

The essentials!

Postscript – I am 47 years old, a powerchair user and live with SMA. I believe Paxlovid (starting on Day 2) and 3rd booster vaccination was a huge factor in me experiencing relatively mild symptoms and basically recovering in 5 days. Huge thanks to my family, my care team, my health team and the Australian Healthcare system for vaccination and access to antivirals. I am a lucky lady and I survived Covid! I will be getting my 4th Pfizer shot 3 months after I got Covid.

Disclaimer – This article contains general information only and MDNSW does not recommend or endorse any particular treatment or drug. It is not intended to replace the advice provided by your own doctor or medical or health professional.