Patient Stories

Early 2016, I noticed numbness in the soles of my feet, someone suggested “cool laser “treatments. After 15 appointments with no results, I gave it up. I was kayaking, riding my bike along trails, playing with a band. I was 81 years old. My wife and I celebrated our 25th anniversary on 8 August 2017 so we booked a Danube river cruise. Disembarking from the aircraft in Frankfurt there was, as usual a crowd pushing for the exit. I failed to notice that there was a 5 or 6” drop from the aircraft to the ramp . With no feeling in the soles of my feet, I must have put my foot half way off the step and fell on the ramp. Attempting to get up (before I got trampled) I had severe pain in my right foot. There was nothing to do but carry on to the bus, and on to the boat. I limped around until a lady loaned me a cane. This helped, but we missed out on the walking tours in Vienna, Budapest and others. When we got home I saw my doctor (who had trained as a neurologist in Ireland) but was now a GP. He told me that I had broken a metatarsal bone. He attended to it and made an appointment for me with Dr. Klimek, a very experienced neurosurgeon. This was 26 Sept 2017. At this point I was using a cane.

My first MRI was 12 November in Hamilton on what Dr. K called “the lower gut.” I was back in Dr. Ks office 27 Dec as nothing was determined. My next appointment was 3 Jan 2018, by now I was using a walker. Dr. K asked me if l could cross the border into the U.S. I said yes and he told me about the Seton clinic in Amherst, N.Y. My second MRI was the next day on the “middle gut” costing $760.00 U.S. I saw Dr. K again 11 Jan 2018, This time I fell flat on my face in front of the doctor, his receptionist, my wife and the other patients… a bit embarrassing! Dr. K’s comment was “next time I see you, be in a wheelchair” …. l was from then on wheelchair bound. We were living in a brick bungalow in the North end of St Catharines, big covered deck, breezeway leading to the garage, 150 foot backyard, trees, shrubs flowers etc. We had planned to stay there forever. Of course it wasn’t suitable for a wheelchair! We found a single story townhouse with the wide doors required. I was unable to climb the two steps from the garage to check the place out! Luckily the realtor and my wife got me in, it was very nice, wide doors etc. We obtained a lift for in the garage, a stair chair to go downstairs, and had the tub removed and a wheelchair accessible shower installed. I had an emergency MRI 13 Jan in St Catharines on the upper gut…back in Dr Ks office 16 Jan Next its St Catharines hospital29 Jan for a CT scan and back to Dr. K 2 Feb.

Okay, enough is enough! I took it upon my self to phone the Seton clinic for an MRI on the brain Feb 6. Back to Dr. K 9 Feb, all they found was a narrowing of an artery in the brain…the least of my problems. Next is an appointment for a spinal tap 26 Feb with Dr. K, as he looked at the fluid he mentioned that my problem looked like CIDP, 7 Mar he made the firm diagnosis ….. Wow, what a trip!

I was set up with IVJG in the St Catharined hospital starting 11 April 2018, each visit took about 4 ½ hours, I got a lot of reading done but never met another CIDP patient ever ! Apparently privacy is a big deal even though I told the nurses to give them my name. CIDP is a lonely journey! So, IVIG 11 April 2018 every three weeks until 13 June 2019 at this point Dr. Klimek took me off the treatments saying “that’s as good as you’re going to get! So, now I’m in remission. When Dr. Klimek retired he asked Dr. Baker to look after me. l went to the clinic in Hamilton twice, strength tests electric current etc.

My last contact was summer 2020 and Dr. Baker wished me well and removed me from his patient list. The only problem I have is with my left knee, It got crunched when I fell between the bed and the wall, too small a space for me, I hurt the ligaments in my knee and now wear a brace.

So, here I am 86 years old, in remission, I feel very fortunate as very few achieve this. I’m a woodcarver, did songbirds for a few years, but carve aircraft now (33 years in the RCAF) I play my harmonicas in a band…well, until covid is done with us I stay home or go shopping with my wife -wearing our mas.  I realize that I am extremely fortunate in so many ways, I wish there was a secret I could share, but it appears to be simply luck!

My thanks go out to Dr. Matt Greenway who had the wisdom to send me to a neurologist, Dr. Ed Klim who didn ‘t quit until I was walking, and Dr. Stephen Baker who put the finishing touches on my CIDP journey.