Back in May 2012 a post popped up on the OMS Facebook page from Suzanne Hadley in North Queensland. She was sharing her husband Rod’s story, and her own distress at feeling she may have to put him into full time nursing care because his needs were so great.
The trials of Rod
Unable to walk or stand, or transfer from his power chair, Rod was incontinent, living under a cognitive fog, unable to feed himself. He had recurrent bladder infections that saw him regularly hospitalised, and he had very high anxiety.
But the reason for Suzanne’s post to the OMS site was that after 20 years of MS decline, and faced with the hardest decision of their lives, Rod had made some lifestyle changes and started to see some slight improvements. It is now over 18 months since that first report on Rod’s progress.
Since then the couple have attended a retreat, tightened up further on their diet (they both eat a vegan plus fish diet), raised vitamin D levels, and remained hopeful and positive. This week Suzanne talked about their journey of the last 20 months, the improvements they have seen, and the difference it is making to their lives. She really wanted to be able to write this blog herself, but too little time (she runs a full-time legal practice) and too much emotion kept getting in the way. We’re very grateful to both Suzanne and Rod for sharing it this way; it is an inspiring story, and it’s not over yet…
A potted history
Rod Hadley was diagnosed with MS back in 1993 when he was a sales manager and business owner, a very sociable family man with an outstanding memory and a passion for adrenaline – think motor bike riding, spear fishing, hang gliding, go kart racing to name a few.
From the start his critical thinking skills were affected and within two years he was out of work and having trouble with walking and fine motor control. By 2000 he was told his MS was progressive so the pharmaceutical drugs he’d been taking were abandoned.
Rod didn’t feel they’d done much to help him anyway. At his 50th birthday party in 2002 Rod could barely stand up; Suzanne had to hold him up while he was making his speech.
He started using a walking frame, then when his legs would crumple beneath even that, he moved on to a wheelchair. For a while he drove a power scooter to get out and about, but by 2011 he had given that up too – his hands didn’t have the strength to operate the controls and he couldn’t concentrate enough to drive it. In late 2011 Rod started having recurrent bladder infections needing hospital treatment. “It was the most awful time of my life and by the time February 2012 came around I really felt he was nursing home material,” Suzanne says.
But then in March two things happened. First, Rod was referred to a therapist in Tully for Fast Magnetic Pulse Induction, a procedure where lengths of electrical cable were placed around his neck while emitting a pulse. Rod had been completely bladder incontinent for years, but after that he sensed some improvement.
And importantly, the other thing that happened was OMS. “We found George Jelinek’s Overcoming Multiple Sclerosis book, and I read it since Rod had lost the capacity to read a few years earlier,” says Suzanne. Rod’s vitamin D level was 60 nmol/L at that time, and he started supplementing to get it above 200 where it sits today. They also moved to a vegan plus fish diet, removing chicken and beef as well as dairy.
They later removed coconut milk and palm oil as well. Another infection saw Rod hospitalised in May 2012, and Suzanne remembers him whispering to her through his exhaustion “tell them I’m vegan”. When Rod came out of hospital on 19th May he announced “I feel really good,” and the next day he declared “I’m going to walk”.
He wheeled out onto the couple’s deck, stood up and grabbed hold of the rail and walked the length of the deck. He continued to do that every day for a while, and although he has suffered some setbacks with his walking following an illness in June he is still more mobile than he has been for years.
At the same time Rod’s thinking skills, pain levels, general mobility, anxiety, and incontinence issues have all improved. And he’s only been in hospital once in the last year, which is a huge improvement. One of the first things Suzanne noticed was that Rod could sit up at night until 10pm, whereas he used to be in bed by 8pm.
And his critical thinking skills started to return. He was able to understand and follow TV shows again, and he no longer felt that he was living through a fog. “There was something on the radio this morning and he actually followed it and was laughing,” Suzanne says.
“Those little milestones make me very happy.” All this means that Rod is becoming a more active participant in his own life, and in Suzanne’s life too. Last week she asked him what he would like to eat and he said “what are you having?” which was a big thing because communication has been a bit of a one way street for years. Rod is once again able to feed himself, mostly, and has started to dress himself again.
Previously needing total assistance to shower, he now drives his wheelchair into position, stands up, takes a backward step into the shower chair, sits up and showers himself. He is then able to step out of the shower and help putting on his clothes.
When they go out in the car Rod drives his wheelchair to the back of the car, walks (using a handrail) the length of the car to the passenger seat, gets himself in and puts on his own seatbelt. Previously Suzanne had to struggle him into the seat by herself. Rod’s pain from trigeminal facial myalgia – “wicked pain that we both used to cry at” – has vanished.
He sleeps through the night pretty much every night, and after years of total bladder incontinence he is now re-gaining control. He still uses a wheelchair.
Starting at 5.30am the couple travelled by boat from Cairns to Cooktown, getting changed into their race gear on the way. Rod entered, and won, the competition for the best dressed male, and Suzanne came home with the ladies classic.
Not 'nursing home material'
The weather was pretty rough on the way back and they finally made it home by around 11.30pm. “For Rod to go on a trip like that and actually have a really great time was just the most amazing thing,” says Suzanne. This story offers hope to anyone who has been severely disabled by MS, anyone who has been diagnosed for a long time and perhaps feels that OMS is not for them, that it only works for the newly diagnosed, or for people with relapsing remitting forms of the disease. Rod Hadley was almost totally incapacitated by MS – in his wife’s own words he was “nursing home material”. But not any more.