To this point this has been a journey spanning about 11 years of searching for answers, a cure for the disease called MSA. We have to thank our family and our son Chris to help 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, take various mixtures that supposedly regenerate brain cells, hypnotherapy, QXCI therapy, Neuralink massage and certainly they all gave a positive feeling. We have with Chris’s help scanned the Internet for the answers that we 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 has been a primary school teacher, teaching mainly infant grades for 38 years. She has taught at places such as Bright, Myrtleford and Wangaratta. Where we were married 47 years ago and were blessed with three supportive children. About ten years ago Jill noticed her writing was deteriorating – following a comment from one of her pupils ” we can’t read your writing Mrs. Keenan” then followed a fall at school. She took some time off and was diagnosed with stress and depression.
Our daughter Allison & her husband Chris decided to go for a trip around Australia and invited us along. We thought this would give us a chance to wind down. The trip was great but things didn’t change and following several more falls.
We got a referral to a neurologist who did a CATT scan and suggested a stroke but ordered an MRI to confirm it. This did confirm one thing – it was not a stroke- but he could see no other problem.
A further six months passed and our GP arranged a consultation with a neurologist in Melbourne (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 said she had Cerebella Atrophy (shrinkage of the cells in the Cerebellum) with no cure or treatment. Basically go home and call me if things change.?This was devastating news , Jill was terrified that the children may have the problem passed onto them. A couple of months latter a friend who’s son is a neurologist in London gave us the name of a neurologist doing research here in Australia into Ataxia in Children. We were able to get into see him. He confirmed the diagnoses but was also able via blood tests to confirm that it was not genetic (a relief). For the next 18 months we tried every thing from Natural medicine, to massage and probably the most important thing was Jill’s positive approach to exercise. Every morning she would do approximately two hours of exercise. The symptoms persisted balance and speech difficulties.
After two years from the first visit to the neurologist in Melbourne we returned but had no more great news , although he confirmed a diagnosis of Cerebella Ataxia – Multiple Systems Atrophy (MSA-C)?During all this time we had looked at various Webb sites such as the Ataxia Society of America with little result.?Our son Chris also searched the internet and finally came up with www.Stemcellschina.com and also contacted them by email and phone. He also spoke to patients that had been through Nanshan and with his encouragement and that of our other children we were there.
Five weeks in China at Nanshan Hospital Shenzhen China. Jill had 5 spinal injections and 2 intravenous treatments of stem cells from umbilical cord blood. Combined with these was intensive rehabilitation exercises, electronic voice stimulation and massage. Jill’s walking improved to the extent she was able to walk 50+ meters unaided- wether this was a result of the stem cells or the extensive exercises we don’t know. 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 as well as 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 is a combination of both.
On Friday October 13th (we are not superstitious – but I checked to see if Jill had walked under a ladder) Jill had a fall and cracked her sacrum and spent the next 5 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 has been compromised and she continues to need the aid of the frame or walker.
We continue to exercise daily and do the voice exercises. She has 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. Currently Jill has achieved a new step – being able to walk 500 meters using arthritic crutches. The wheelie walker is a must for getting around the house but with perseverance she will be able to use the crutches and finally be back on her feet unaided
We have continued to search for any treatment that will help Jill’s condition. Currently we are trialing a drug -”Hytrin- Terazosin”. There have been some positive results in USA and in Queensland. This will take some time to see the results. Our next thing was to take part in a “Parkinson intensive Voice Management Clinic” The most important thing for Jill is to be able to speak – normally.
The Hytrin did not show any improvements – made Jill extremely tired. We went to Albury and took part in Speech Clinic. Jill was surprised at the range of speech she was able to achieve – both in volume and clarity. We have continued to do the exercises on a daily basis. Jill emotionally does not see the improvements but everybody that visits comments on her speech.
Her walking with the walker and crutches has not gone as well as we had hoped, she had another fall and gashed her arm (32 stitches) and hurt her back. We have been getting treatment at the chiropractors and she is slowly showing some improvement. We have been using the swimming pool for exercises – she is able to walk around the pool unaided even to the extent of jogging – aim would be to replicate this out of the pool. We have got back to the netball courts to walk again – March 2008
Over the past three months Jill has continued with determination to exercise – both speech and physical. Like most of us some days are hard to take and emotionally she does not cope that well. She has been having trouble with loud breathing when asleep and we visited a specialist and he 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, small hospital bed and all the leads. When I returned at 6.30am next morning the nurse informed me she did not sleep that well – no surprise. Finally 4 weeks later we got the results. The specialist asked how much do you think you slept – 1.8% of the time. However they got the results needed. Jill is suffering from moderate apnea. In the meantime Jill had been suffering reflux and had been prescribed Nexium and Gaviscon for it. Surprisingly her loud breathing had subsided considerably. Jill has also been on a controlled diet and over the last 6 week has lost 6kg. The specialist thinks it may be a combination of both and suggest we wait 3-4 months and see if it continues to improve – the alternative is a CPAP machine to control the breathing over night. We have made more inquiries re going back to China. Jill has continued to have recurring UTI infections and we need to get that under control before heading to China.
The diet has continued with great success – 14 Kg and we believe this has helped with walking and sleep apnea. Finally we have decided to return to China. We are booked in for five stem cell injections and a bone marrow transplant (BMT). The BMT will depend on Jill’s osteoporosis – before we go she is having another bone density scan. We head for China in two weeks on the 2nd of November 2008 to Qingdao.
We departed from Australia on a direct flight to Hong Kong and with the aid of the great staff on Cathay Pacific we were able to transfer to the flight to Qingdao. They provided a wheel chair for Jill to exit the flight and we were escorted through customs and 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 the 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 get a taxi to go to the super markets unlike 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 a intravenous injection and then every few days the next four were via spinal injection. We had 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 a 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 2-3 hours out of each day.
After 6 stem cell injections and millions of stem cells we arrived back in Australia in the first week of December 2008. We looked for improvements and noticed like before that Jill’s fine motor skills seemed to improve and Jill’s writing was better and she wrote a small 3-sentence letter to each of our children and they were very excited. Once back home we got back to exercising. Jill was having trouble her knees and that continued to affect her walking. There have been no outstanding improvements, but also no decline in her condition. We are hoping that the stem cells will gain us time and that either modification of stem cells or a medical treatment will become available in the fore see-able future.
It is over 12 months since I updated this section of our blog. There has been little or no improvement in Jill’s condition since we arrived back from China. Although Jill is now using a CPAP machine at night and her sleeping and my sleeping have certainly improved. Following a visit to a urologist and a visit from a continence nurse Jill began using a catheter. She has been self-catheterising herself for the last 6 months and although it is something you would not do by choice it has given her a certain amount of freedom. She started doing it late evening and in the morning but found that pre evening meal was also required. Example of freedom is the ability to go out for up to 4-5 hours without having to find a disabled toilet, which she hates using.
Over the past 12 months her ability to walk (even behind the walker) has decreased dramatically due to the arthritis in her knees and following several visits to orthopedic surgeons she is finally to have her left knee replaced in March 2010. She is in tears with the pain when she goes to the shower or toilet and exercising has been curtailed. Getting out to our gym has changed from walking the 50 meters to her sitting on the walker and me pushing. Even that has now changed, as there were three spots where she had to get down a step or through a doorway with restricted access. She has been using hand weights, foot cycle machine while sitting in her chair and using the vibration machine in a sitting position. The pain from her knees and her lower back continue to be the main debilitating problem. Her balance and tremor in her hands cause a few problems. She has not had any major falls recently although I am probably over protective and insist on being by her side at all times. Shower time is the only one where we have a small area of concern. Things improved about 12 months ago when we converted our bathroom into an en-suite to the bedroom and the shower and toilet became walk-in facilities. Plenty of hand rails and access.
Finally she has had to accept a wheel chair so that we can keep doctors appointments, finally visit family and go shopping in a super market or shopping center. (The first time in about 5 years because of balance and embarrassment) Over the last 12 months Jill’s voice has become quieter and she is more critical of it than anybody else as we can still hear her and in most cases do not have to ask her to repeat as this gets her angry with herself. She still uses the Vocastim voice stimulator although not as often as we should. Every one says you have all this time but it just disappears. Getting up, showering, toilet, catheter, makeup, breakfast and medicine and it’s lunch time. Watch TV, exercise rest and the afternoon also disappear. Jill has always been a night person and it is difficult to get her into bed before 11 pm and then she wants to listen to the radio until she falls asleep.
March 2010 is just around the corner and the operation and rehabilitation -thinking positive- will help to ease the pain in Jill’s knees and let her get back to exercising in the gym.
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 6 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 catheterize.
Coping with the pain from the surgery and the exercise has been difficult although I see improvements it is going to take much longer than we ever thought. I should have realised this as with every other infection Jill gets we can double or even triple the recovery time when compared to you or I.
She is making a great effort to be able to go to Melbourne for the birth of Chris and Nicole’s baby – our first grand child. 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 has not been all that we had hoped. The pain from the knee joint has diminished but her ability to walk is not what she had hoped. Jill’s determination to walk and talk always drive her on. We have both speech and physical therapists visit each week.
It is a while since I added to this journey and it has taken lots of twists and turns. The purchase and modification of the wheel chair accessible caravan has been not only a continuing challenge for me but it keeps Jill interested in something else. We have added recliners for more comfort, gas heating and the other day I added an external table. This is with the hope that we can again plan another trip. The visits by the family and of course RILEY makes her days seem bearable. She loves when the kids ring and I put the phone onto speaker and as usual it’s me that does most of the talking. The use of Skype to watch Riley grow up and to be able to talk to her sister has been great for her. The visits each weekend by my sister Pat and Keith for lunch helps keep Jill up to date with local news, especially about Yarrunga Primary School where Jill used to teach.
Over the past few months Jill has had several blackouts – where she just slumps to the floor and appears to be unconscious for up to 30 seconds and when she comes to she asks “How did I get down here” fortunately I have been able in each case to ease her to the floor. I have spoken to Jill’s physician about the episodes and he suggested that he would put a heart monitor on for a period to see if we can see any reason. My thought has been low blood pressure. She has never had any problem with blood pressure and her neurologist was always amazed that her standing, sitting and laying blood pressure was always similar.
Last week (Last week of October 2011)we commenced LSVT again and it always amazes me how her speech responds . My only wish is that Jill can translate that improvement into every day conversation. She hears only the croaky sound and there fore doesn’t want to speak when we have guests and looks to me to talk for her.
Reading has always been Jill’s great interest and it has now been a long time since I saw her sit and read a book – Last week I found some audio books and since Di Morrissey is one of her favorite authors I down loaded “The Islands” on to our Mac and the IPhone so that she can listen to it.
We have just trialed a Milford personal Lift which will be fitted into our Jeep and will lift Jill from the wheel chair into the passenger front seat. Jill’s first comment was “I don’t need that” but it has become much more difficult for her to get into the Jeep. We are also looking at an electric lift chair for the lounge to help Jill get up and down – again “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 wheel chair 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 and she actually passed out and we were then siting on the ground for some 30 minutes. Eventually with the extra support we were able to get her in . I think that was obvious to Jill that we needed to do something. This was not the first time she had sat on the ground before being able to gather enough strength to get into the car.
Finally the lift has been installed March 2012 and we used it for the first time on our Labour Day holiday at Eildon. The stress that it takes out of getting into the car is great. Currently Jill still wants to get out of the car with out using the hoist but I will need to encourage her, as my worry is that she may fall.
At home we are having trouble getting into the shower and toilet – even though every thing is roll in etc. We have commenced using a toilet/shower transfer chair but it has been difficult for Jill to get onto it, as it is fairly high. She currently has to use a step to get up on to it. Again my worry is that she may fall. After talking to the OT and physio they suggested we try a lifting hoist. You all know what Jill’s comment was.
I have to go into hospital for a day procedure and Jill has accepted a carer coming into the house while I am away. The agency supplying the carer have insisted on a hoist – so we have had one to try and it will be delivered a week before my hospital visit. If it works as I imagine then that will be the next step.
Over the past few weeks Jill has been measured for a custom wheel chair which will make going out much more comfortable for Jill. The chair is ordered and we hope it will be come available over the next few weeks. The chair will also become her kitchen chair.
I mentioned that Jill had suffered from several blackouts on May 7th 2012 at about 11pm while transferring from the toilet to the bed Jill collapsed and in falling her left leg was trapped beneath her and she broke her tibia just below the knee replacement. She spent the next 10 weeks recovering in hospital. Finally being able to go home and continue recovery – not allowed any weight bearing on her left leg. We were using a tilt in space wheel chair, a hydraulic hoist and the aid of carers morning and night with showers, dressing and showering. After another X-ray and the clearance to start rehab and weight bearing August 7th 2012. While in Hospital
Another burst of rehab in the hospital – hoping to get Jill back on her feet. Great to see Jill stand even though it is with assistance. The next thing is to continue this back home.
Over the past 2 months at home with a great physio we have been 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 10 metres. She has had physio about 3 times a week, which also includes Lymphatic massage, as she has put on a lot of weight – mostly fluid. It is now the end of Nov 2012 and we are having a problem with Stridor. This started several years ago but was being controlled with the CPAP machine. While in the hospital it seemed to get worst and the nurses kept telling me and I blamed them and the use of the CPAP. 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 have worsened over the past 2 months.
Jill also had several UTI infections while in hospital and a couple more since coming home – my worry is it is from the catheter, which has been in for about 2 years. Our GP has suggested we see a urologist with the thought of changing to a Supapubic catheter. The appointment is in Jan 2013
An appointment with new Neurologist in Melbourne Jan 7 2013 and an appointment with urologist Wangaratta 17th Jan 2013
The arrival of our second grandson Lucas Peter has added another bit of excitement and Jill could hardly wait to get to Melbourne to see and nurse him and of course play with Riley. We had two trips down one for the birth and the second corresponded with the appointment and the arrival home of Lucas and Nicole.
The appointment with Neurologist was very positive – it is the first time Jill has felt confident with discussing her problems with someone – Even though I did most of the talking as usual. She is conducting some research into early diagnosis and the ability to diagnosis positively from alternate diseases like PSP & Parkinson’s. She suggested Jill would be able to be part of the research. We will need to think about it as it is being conducted at the ALFRED in Melbourne and that is difficult for us to get to.
The appointment with the Urologist when well but the decision is still ours or in reality Jill needs to be happy to change.
Jill had her usual 6 monthly dental appointment with no treatment required. She has been complaining that her sight has got worse. In the last couple of weeks her glasses had been dropped and the frame had broken so new glasses were on the cards. After the examination it was suggested that she would benefit from a stronger prescription. The new glasses ware ordered and she is very happy with these. It’s great to see her doing some limited reading in comparison to none at all.
Early February Jill has been moved to an EACH package, which will fund some home care facilities such as physio, speech and several others as required. We have had some teething problems with this but will get used to it in time. The new wheel chair has finally arrived and we are getting used to it – tilts beautifully and is easy to move in the house. We also got news that the Sara Stedy – standing transfer unit is fully funded and it is ours for as long as required.
We are planing to go away for Easter to Eildon Caravan Park as we have done for the past several years – a family get together and a time to forget. Getting around has been a bit more difficult so we decided to do a trial week end when only close family will be there . We packed and went to Eildon in our Accessavan and every thing went very well so Easter her we come.
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 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 the Friday (5th April). We had our evening meal and Jill wanted to watch the football and finally we were in bed around midnight. I kissed her goodnight – rolled her over a couple of times during the night.
The alarm rang at 7 am – 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.
6th of April 2013
Jill’s journey came to an end around 7am on the 6th of April 2013 – she had passed away in her sleep .
Darling you will always be in my heart and you can let me know when you want me to join with you