Until there's a cure ... there's care

Richard Chandler

By Richard Chandler

In early 2011 my brother noticed that my voice seemed slurred. Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze. As the year passed I recognised the voice change and also began to experience a dry cough and difficulties with swallowing. My GP eliminated medication problems and suspected a mini stroke so in about late October I had a referral to a neurologist.

I first visited the neurologist in February 2012 and his initial diagnosis was Pseudo Bulbar Palsy. An MRI was performed in May and it revealed that Primary Lateral Sclerosis was added to my list of ills. I was assured that the PLS was a very slow moving version of MND and that I could last up to 20 years. My wife, Beverley observed that I could almost last to 100. The immediate problem to be addressed was the swallowing difficulty so I was off to a Speech Pathologist. I am now an expert at chewing dry biscuits and sipping water.

I was seeing both the neurologist and the speech pathologist on about 6 monthly intervals. In 2013 my care was enhanced by coming under the supervision of the Progressive Neurology Clinic at Barwon Health, Belmont. This was an eye-opener as I found myself with scheduled reviews by a Neurologist, a Physiotherapist, a Speech Pathologist, an Occupational Therapist, a Dietitian and a Social Worker. Both Beverley and I were overwhelmed by the interest and support available to us. At this time I was still able to shuffle across a wide street at traffic lights but I was starting to feel unsure of my walking abilities. The lack of balance problem was descending on me. I bought a walking stick to help keep me safely erect.

In early 2014 the Physio gave me an exercise to stretch my calf muscles and as I had been doing strenuous exercises for some years to maintain my upper body strength, I took on this new one with vigour. Bad news as I had damaged the plantar of my left foot and I only maintained my mobility with help from a moon boot. I managed to take us for an 8 day driving trip to Tasmania in November but that was close to the end of my driving.

In 2015 our hospital HACC team took an interest in me and we went through Advanced Care Planning and updating of Powers of Attorney. Our HACC OT also visited and we had some work done on our bathroom to improve my safety. She also suggested that we consider a stair lift to handle the 6 stairs from our front door to the carport floor level. We proceeded with an application for funding for this and it was installed in August 2016.

In about July 2015 I finally had to retire the walking stick and adopt a 4 wheel walker to support me in moving about. The walker has been a great help and it also defines the size of motor car that we need. My speed is such that I will not dare to attempt to cross any street. Through all of this I have maintained a strenuous exercise regime which includes an hour of physio supervised weights, stair climbing, crab walking and balance exercises in the gym at our local Community Hospital.

As time passed everything seemed to be under control but in November 2015 I realised that I had lost about 13 Kilos in the preceding ten weeks. I really needed to visit the PNC Clinic Dietitian as I seemed to be preparing to take a job as a scarecrow. I had been following the diet that Beverley followed as a type 2 diabetic. The weight loss problem was quickly solved by the consumption of copious quantities of Sustagen and my weight was soon returned to 83 kg.

While I also have some other health problems, I am in good spirits and look forward to years of home care and participation in our local community. It is impossible to speak highly enough of the dedicated care that I receive from Beverley, the Hospital Complex Care team, our local GPs and all at the PNC clinic. My thanks also go to MND Victoria for provision of the walking aid, the shower stool and the ongoing interest of their visitors. It is now early 2017 and Beverley is still able to take me out to enjoy a coffee with friends for about 3 days each week. I have joined the local Men's Shed however my participation is limited by minor problems like taking about 4 hours from out of bed to out the door.

* Believed to be the annual incidence of PLS in Australia at that time.

This story was originally published in MND News: March/April 2017.


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