MSA Stories: Jill
Updated: Apr 16, 2020
Youth Neuro Australia has conducted a series of interviews with patients and carers afflicted by Multiple System Atrophy (MSA) - a neurodegenerative disease that has impacted thousands in Australia. Despite this, there is a lack of awareness both within the public and the medical community. Currently, there is inadequate support for these individuals, and minimal research being conducted due to limited funding. Through our interview series, we hope to raise awareness to help improve the life of patients and carers suffering from this brutal condition.
To this point, this has been a journey spanning about eight years of searching for answers, a cure for the disease called Multiple System Atrophy (MSA). We have to thank our family and our son Chris for helping to lead us to the decision to go to Nanshan Hospital in China. We have visited several neurologists only to be told that research is years away. Jill has in all this time continued to do all types of exercise, taking various mixtures that supposedly regenerate brain cells, hypnotherapy, QXCI therapy and Neuralink massage and certainly, they all gave a positive feeling. We have, with Chris’s help, scanned the Internet for the answers that we’ve always wanted to see. When Chris sent us the first message with the link to Stemcellschina, we thought that it could be the way to head. Lots of questions were emailed to China and they were all answered. But the biggest step is to make the decision to go to a country that is a mystery to us where we cannot speak or understand the language.
Below is a brief history of how we got to now.
Jill was a primary school teacher, teaching mainly infant grades for 38 years. She taught at places including Bright, Myrtleford and Wangaratta. These places are where we married 40 years ago and where we were blessed with three supportive children. About ten years ago, Jill noticed that her writing was deteriorating. She received a comment from one of her pupils stating “we can’t read your writing Mrs. Keenan.” In the months following, she sustained a fall at school. As a result, she took some time off and was diagnosed with stress and depression.
Our daughter Allison and her husband Chris decided to travel around Australia and invited us along. We thought this would give us a chance to wind down. The trip was great but Jill’s health didn’t change. She sustained several more falls.
At this point in time, we received a referral to a neurologist who did a CAT scan and suggested that Jill may have suffered from a stroke. The doctor ordered an MRI to confirm it. The results of this imaging confirmed only one thing - it was not a stroke. However, the doctor stated that he could see no other problem.
A further six months passed and our GP arranged a consultation with a neurologist in Melbourne, Prof Trevor Kilpatrick. After the consultation, he booked Jill in for a battery of tests at The Royal Melbourne Private Hospital. Finally he sat on the end of Jill’s bed and informed her that she had Cerebellar Atrophy (shrinkage of the cells in the cerebellum) with no cure or treatment. This was devastating news. Jill was terrified that the children may have inherited the problem. A couple of months later, a friend whose son is a neurologist in London gave us the name of an Australian neurologist researching Ataxia in children. We were able to see him. He confirmed the diagnoses but was also able to confirm that it was not genetic, which came as a relief. For the next 18 months, we tried everything from Natural Medicine to massage therapy. Probably the most important thing during this challenging time was Jill’s positive approach to exercise. Every morning, she would complete approximately two hours of exercise. However, her balance issues and speech difficulties persisted.
After two years from the first visit to the neurologist in Melbourne, we returned with no more great news. Prof Kilpatrick confirmed a diagnosis of Cerebellar Ataxia – Multiple Systems Atrophy (MSA-C). During this time, we had scoured various websites such as the Ataxia Society of America with few results. Our son, Chris, had also searched the Internet and arrived at www.Stemcellschina.com. He contacted them by email and telephone. He also spoke to patients that had been through Nanshan and with his encouragement and that of our other children, we went.
Five weeks at Nanshan Hospital, Shenzhen, China. Jill had five spinal injections and two intravenous treatments of stem cells from umbilical cord blood. Combined with these were intensive rehabilitation exercises, electronic voice stimulation and massage. Jill’s walking improved to the extent she was able to walk over fifty metres unaided- whether this was a result of the stem cells or the extensive exercises, we will never find out. Our children, Chris and Allison, came to China to help their “old” parents – and that was exactly what we needed.
Once back in Australia, we set up JILLIAN’S GYM and continued the full range of exercises Jill had been doing in China. We also purchased a Vocastim unit from Germany (the electronic voice stimulator) and continued doing those on alternate days in conjunction with her voice exercises. By October Jill was walking 500 meters unaided. Her voice had maintained a constant range. Was this stem cells or constant exercise? I really think it was a combination of both.
On Friday 13th October (we are not superstitious - but I checked to see if Jill had walked under a ladder), Jill had a fall and cracked her sacrum. We spent the next five weeks in hospital and we were back to where we started. She had to learn to walk all over again. Using a walking frame with great determination, she was back on her feet. The next stage was walking with the aid of a Wheelie walker. Her balance had been compromised and she continued to require the aid of a frame or walker.
We continued to exercise daily and complete the voice exercises. She had various goals to achieve. The major one was to dance at Chris and Nicole’s wedding in March 2007. It was a wonderful day to see her on the floor with Chris. At the time, Jill had achieved a new step – being able to walk 500 meters using arthritic crutches. The wheelie walker remained a must for getting around the house but with perseverance, she was able to use the crutches and finally get back on her feet unaided.
We continued to search for any treatment that would help Jill’s condition. At the time, we were trialing a drug called ”Hytrin- Terazosin”. There had been some positive results in the USA and in Queensland. Our next step was to take part in a “Parkinson intensive Voice Management Clinic.” The most important thing for Jill was to be able to speak – normally.
The Hytrin did not show any improvements – in contrast, it made Jill extremely tired. We went to Albury and took part in a Speech Clinic. Jill was surprised at the range of speech she was able to achieve – both in terms of volume and clarity. We continued to do the exercises on a daily basis. Jill did not see the improvement but everybody that visited would comment on her speech.
Jill’s walking with the walker and crutches had not gone as well as we had hoped. She sustained another fall, gashed her arm (32 stitches) and hurt her back. Her fall came after treatment from a chiropractor, during which she had shown some improvement. We ended up using the swimming pool for exercises. Eventually, she was able to walk around the pool unaided even to the extent of jogging – the aim of this was for her to replicate this out of the pool. We returned to the netball courts to walk in March 2008.
Over the next three months, Jill continued to exercise. She powered through both speech exercise and physical exercise with determination. Some days were hard to take and emotionally, she did not cope well. She had experienced some trouble with loud breathing when asleep and we visited a specialist who recommended a sleep study. I delivered Jill to the local private hospital at 8pm and she was wired up to the computer. I had no idea how she would cope – away from home in a small hospital bed, attached to countless leads. When I returned at 6.30am the next morning, the nurse informed me that she did not sleep well, which was unsurprising. Finally, four weeks later, we received the sleep study results. The specialist informed us that Jill had only been asleep 1.8% of the time. She was suffering from moderate sleep apnoea. However, by the time we received these results, Jill’s loud breathing had subsided considerably. Whilst we waited for the results, Jill had been prescribed Nexium and Gaviscon for reflux. She had also been on a controlled diet and had lost six kilograms over a six week period. The specialist suggested it may have been a combination of both weight loss and medication that contributed to her improvement. He advised us to wait three to four months to confirm improvement – the alternative was a CPAP machine to control breathing overnight.
In the meantime, we made more inquiries about going back to China. Jill continued to have recurring UTI infections and we need to get that under control before heading to China. Weeks passed and the diet continued with great success – 14 kilograms! We believe this helped with walking and sleep apnea. Finally, we decided to return to China. We were booked in for five stem cell injections and one bone marrow transplant (BMT). The BMT depended on Jill’s osteoporosis – before we went, we had another bone density scan. With all this settled, we headed to Qingdao on the 2nd of November 2008.
We departed from Australia on a flight to Hong Kong and, with the aid of the great staff from Cathay Pacific, we were able to transfer to the flight to Qingdao. They provided a wheelchair for Jill to exit the flight and we were escorted through customs this way. Finally were met by the Beike staff and driven to the hospital. It was certainly different to the Nanshan Hospital – more modern and the ward allocated to stem cell treatment was extremely modern and clean. We were assigned a room and then taken on a tour of the amenities. We also met several other stem cell patients. This time, we were a little more ready for the change between Australian hospitals and those of China. They had a kitchen for us to prepare our meals. The only problem was that we had to catch a taxi to go to the supermarket, unlike in Shenzhen where they were within walking distance. We met all the doctors and, with the aid of an interpreter, were able to discuss Jill’s condition.
Jill commenced her stem cell treatment with the first one being an intravenous injection. Over the next few days, she received four treatments via spinal injection. We decided to have some of Jill’s bone marrow extracted and have this cultured in a lab to generate more stem cells. The extraction of bone marrow was done under full anesthetic in an operating theatre. She was quite impressed and said she would like to have the rest under anesthetic. In between each stem cell treatment, she had acupuncture, massage and physical therapy. This usually took about two to three hours out of each day.
After six injections and millions of stem cells, we returned to Australia in the first week of December, 2008. We looked for improvements and noticed that, just like before, Jill’s fine motor skills including her handwriting had improved. She wrote a small three-sentence letter to each of our children and they were very excited. Once home, we got back to exercising. Jill was having trouble with her knees and that continued to affect her walking. There were no outstanding improvements, but also no decline in her overall condition. Nonetheless, we hoped that the stem cells would gain us time and that either the modification of stem cells or a new medical treatment would become available in the foreseeable future.
Twelve months later, there had been little or no improvement in Jill’s condition since our trip to China. Jill had begun using a CPAP machine at night and our sleeping had certainly improved. Following a visit to a urologist and a visit from a continence nurse, Jill began using a catheter. She would self-catheterise herself and, although it is something you would not do by choice, it gave her a certain amount of freedom. She used it in the late evening and in the morning but found that using it pre-evening was also required. She was able to go out for up to four to five hours without having to find a disabled toilet, which she hated using.
It was during this year that her ability to walk even with a walker decreased dramatically. She had arthritis in her knees and following several visits to orthopedic surgeons, she would have her left knee replaced in March 2010. She would tear up in pain when she went to use the shower or toilet and exercising had been curtailed. Visiting our gym changed from walking the 50 metres to her sitting on the walker and me pushing. Eventually, even that changed, as there were three places she had to take a step or walk through a doorway with restricted access. She used hand weights, a foot cycle machine while sitting in her chair and the vibration machine in a sitting position. The pain from her knees and her lower back continued to present the main debilitating problem. Her balance and the tremor in her hands also caused a few problems. Showering was the only area where we had little concern. We had converted our bathroom into an en-suite to the bedroom and the shower and toilet became walk-in facilities with accessibility features including hand rails.
Eventually, Jill resorted to using a wheelchair so that we could attend doctor’s appointments, visit family and go shopping in a supermarket or shopping center. Over time, Jill’s voice became quieter. She was more critical of her own voice than anybody else. She still used the Vocastim voice stimulator although not as often as we should. Everyone says you have all this time but it just disappears. Getting up, showering, toileting, using a catheter, makeup, breakfast and medicine and it’s lunch time. The afternoon also disappears with exercise, resting and television. Jill had always been a night person and it was difficult to get her into bed before 11 pm. At this time, she would listen to the radio until she fell asleep.
March arrived and the operation to replace Jill’s left knee went without a hitch. After a few days in ICU, she was moved to the rehabilitation ward and the long haul began. Jill spent six weeks in rehab being allowed home over Easter for a couple of day visits. Finally the time came and via a wheelchair taxi, we arrived home. While in hospital she had a catheter put in and because of her balance etc she had found it nearly impossible to self-catheterise at home.
Coping with the pain from the surgery and the exercise was difficult. Although there were short-term improvements, the healing process took much longer than we expected. I should have realised this as with every other infection Jill contracts, she would double or even triple the recovery time when compared to you or I. At this time, Jill made a great effort to be able to go to Melbourne for the birth of Chris and Nicole’s baby – our first grandchild. Riley arrived on the 29th May 2010 and we were there to welcome him into our family. I was so proud of Jill being so determined.
The surgery although successful had not been all that we had hoped. The pain from the knee joint had diminished but her ability to walk was what she had hoped. Jill’s determination to walk and talk always drove her on. We had both speech and physical therapists visit each week.
The purchase and modification of the wheelchair accessible caravan was a continuing challenge for me but it kept Jill interested in something else. We added recliners for more comfort, gas heating and an external table. This was all with the hope that we could again plan another trip. The visits by the family and of course Riley made her days seem bearable. She loved when the kids ring and I put the phone onto speaker. However, it was me that did most of the talking. The use of Skype to watch Riley grow up and to be able to talk to her sister was great for her. The visits each weekend by my sister Pat and Keith for lunch helped keep Jill up to date with local news, especially about Yarrunga Primary School where Jill used to teach.
During this time, Jill suffered several blackouts. In a blackout, she just slumped to the floor and appeared to be unconscious for up to 30 seconds. When she awoke, she would ask “How did I get down here?” I spoke to Jill’s physician about the episodes and he suggested that he would put a heart monitor on for a period to search for a specific cause. My thought was low blood pressure. She never had any problem with blood pressure and her neurologist was always amazed that her standing, sitting and lying blood pressure were consistently similar.
In the last week of October 2011, we commenced LSVT again and it always amazed me how her speech responded. My only wish was for Jill to translate that improvement into everyday conversation. When she spoke, she stated that she could hear only a croaky sound and therefore refused to speak to guests. She would always look to me to talk for her.
Reading was always Jill’s great interest and it had been a long time since I saw her sit and read a book. At the end of 2011, I found some audio books and downloaded “The Islands” by Di Morrissey, her favourite author, onto our Mac and the iPhone so that she could listen to it.
In 2012, we trialled a Milford Personal Lift which was fitted into our Jeep. It would lift Jill from the wheelchair into the passenger seat. Jill’s first comment was “I don’t need that” but it had become much more difficult for her to get into the Jeep and hence I believed it was warranted. We also considered an electric lift chair for the lounge to help Jill get up and down. Again, she stated “I don’t need that.” However, a day out with my sister and her husband emphasised how much difference it would make. After walking around in the wheelchair, we got back to the Jeep, but Jill had great difficulty in standing and the effort of stepping onto a step and then up into the Jeep was impossible. She passed out and we remained on the ground for some 30 minutes. Eventually, with the extra support we were able to get her in. I think that made the decision obvious to Jill. We needed to do something. This was not the first time she had to sit on the ground before being able to gather enough strength to get into the car.
In March 2012, the lift was installed. We used it for the first time on our Labour Day holiday at Eildon. The stress that it took out of getting into the car was great. Jill still insisted on getting into the car without using the hoist but I encouraged her to as I feared she would fall without it.
At home we were having trouble getting into the shower and toilet. We began using a toilet/shower transfer chair but it was difficult for Jill to get onto it due to its height. She had to use a step to get up onto it. I worried again that she would fall. After talking to the OT and physio, they suggested we try a lifting hoist. You all know what Jill’s comment was.
I had to go into hospital for a day procedure and Jill accepted a carer coming into the house during the time I was away. The agency supplying the carer insisted on a hoist which would be delivered one week before my hospital visit.
Over the weeks, Jill had been measured for a custom wheelchair which would make going out much more comfortable for Jill. The chair was ordered and we were hoping it would become available over the next few weeks. The chair would also become her kitchen chair.
At about 11pm on 7th May 2012, whilst transferring from the toilet to the bed, Jill collapsed and her left leg became trapped beneath her. She broke her tibia just below the knee replacement. She spent the next ten weeks recovering in hospital. After this, she was not allowed any weight bearing on her left leg. We were using a tilt in space wheelchair, a hydraulic hoist and the aid of carers morning and night with showers, dressing and showering. After another X-ray, she received clearance to start rehab and weight bearing on August 7th 2012.
With a great physio, we were able to continue the first moment of Jill back on her feet – walking with assistance and a gutter frame the length of our passage – about ten metres. She had physio about three times a week, the sessions of which also included Lymphatic massage, as at the time, she had put on a lot of fluid weight. In November 2012, we faced problems with Stridor. This started several years ago but was being controlled with the CPAP machine. While in the hospital, it seemed to get worse. Once home, it was obvious that Jill was actually overcoming the CPAP. We changed the unit to a newer one, which seemed to improve things, but she was on a downwards trajectory nonetheless.
Jill also had several UTI infections while in hospital and a couple more since coming home – my worry was that these infections arose from the catheter, which had been in for about two years. Our GP has suggested we see a urologist with the thought of changing to a Supapubic catheter. We made an appointment for January.
An appointment with a new neurologist in Melbourne on 07 January 2013 and an appointment with a urologist in Wangaratta on 17th January 2013.
The arrival of our second grandson, Lucas Peter, had added another bit of excitement and Jill could hardly wait to get to Melbourne to nurse him and of course play with Riley. We had two trips down - one for the birth and a second which corresponded with the appointment and the arrival home of Lucas and Nicole.
The appointment with the neurologist was very positive – it was the first time Jill has felt confident about discussing her problems with someone. The neurologist is conducting research in the early diagnosis of MSA and the ability to diagnose positively from alternate diseases like PSP and Parkinson’s Disease. She suggested Jill would be able to be part of the research at the ALFRED in Melbourne.
Jill attended her usual six monthly dental appointment with no treatment required. She had been complaining that her eyesight was deteriorating. Her glasses frame had broken so new glasses were on the cards regardless. After the examination, it was suggested that she would benefit from a stronger prescription. The new glasses were ordered and she was very happy with these. It was great to see her doing some limited reading in comparison to none at all.
In early February, Jill was moved to an EACH package, which funded some home care facilities such as physio, speech and several others as required. We had some teething problems with this but got used to it in time. The new wheelchair finally arrived and we were getting used to it - it tilted beautifully and was easy to move in the house. We also got news that the Sara Stedy - standing transfer unit was fully funded and it was ours for as long as required.
We were planning to go away for Easter to Eildon Caravan Park as we had done for the past several years – a family get-together and a time to forget. Getting around had been a bit more difficult so we decided to do a trial weekend when only close family would be there. We packed and went to Eildon in our Accessavan and everything went very well.
We had several toilet mishaps in the week leading up to Easter but as the time approached things seemed to improve and Jill desperately wanted to go. We left home on the 27th March so as to avoid the Easter traffic – arrived and set up camp. Everyone arrived and we had a great time. We had a couple of meals at the local pub and several walks around the caravan park – normally Jill was hesitant in being seen but she really enjoyed those walks. The evenings around the campfire until late evening were also enjoyed. We decided to stay until the weekend after Easter with Jill’s sister. I had hurt my back and after several visits to a local chiropractor, we decided to go home on Friday 5th April. We had our evening meal and Jill wanted to watch the football. Finally, we were in bed around midnight. I kissed her goodnight.
The alarm rang at 7am – I looked at Jill and she seemed to be still asleep – I showered and got dressed and then told Jill it was time to wake up.
06 April 2013
Jill’s journey came to an end around 7am on the 6th of April 2013 – she had passed away in her sleep.
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