Mac and Jill

I am sitting in Allison’s dinning room eating breakfast and watching with envy their 50 inch Plasma. It is fantastic. We drove across on Saturday afternoon – this is the first time away from home in 5 months. Chris and Nicole arrived about 6 pm just in time for a roast chicken prepared by Allison & Chris. It was great to be with the family for the evening. We are here until Tuesday – the Jeep is due for it’s 20,000k service – under warranty we have an oil leak and must get it seen to.

We have continued our correspondence with China and part of our trip to Bendigo was to discuss with the kids the proposal that we go back to China for the next round of stem cells. I have printed off all the information for the kids to read and put in their thoughts. Jill is more worried about the cost than the trip (I think). We have been down at the net ball courts each day and she is insisting on lots of walking with the crutches – I think she is hoping she will be able to negotiate the airport on crutches – I suggested the other day that the logical way is in a wheel chair.

I received an email the other day which describes MSA very well. MSA is like Neapolitan ice cream (vanilla, choc, strawberry). Every scoop (patient) is a little different.

MSA and the Neapolitan ice cream Analogy
by Pam Bower

Think of MSA as the 3 flavoured ice creams called Neapolitan which has vanilla, chocolate and strawberry all mixed together. Imagine if you took one scoop of that ice cream and put it in a dish, then took another scoop and put it in another dish and compared the two dishes. You would notice that there is not the exact same amount of vanilla, chocolate and strawberry in both of the dishes. “Multiple System Atrophy” is the same as the Neapolitan ice cream.
There are three flavours included in MSA:

1. Shy-Drager Syndrome (SDS) - Think of it as the strawberry ice cream
2. Olivopontocerebellar atrophy (OPCA) - Think of it as the vanilla ice cream
3. Striatonigral Degeneration (SND) - Think of it as the chocolate ice cream

Whether someone is told they have SDS or OPCA or SND they all have one scoop of Neapolitan ice cream in their dish. They all have Multiple System Atrophy. If their symptoms are mainly orthostatic hypotension or urinary incontinence they have mostly strawberry ice cream in their dish (SDS). If their symptoms are mainly cerebella ataxia they have mostly vanilla ice cream in their dish (OPCA). If their symptoms are mainly tremors they have mostly chocolate ice cream in their dish (SND). If they have all of the above symptoms then they might have nearly equal amounts of chocolate, strawberry and vanilla in their dish.

I think that Jill is mainly vanilla with a small amount of Chocolate and strawberry - She will disagree because she loves anything Chocolate.

Well if I am going to put this on the net I had better do it

See you next week with our decision – and any donations will be accepted – Only a Joke

See you next week on the net.

 This is a picture of Chris and one of the Salmon that he caught Fly Fishing over at Mallacoota the other weekend.

What sort of night did you have? Mine was s***! I woke about 4am with a noise which continued and I lay there thinking what is it, and then I started to think how irresponsive some one was. Finally the toilet called and the noise level increased. I thought that sounds like water bubbling. Suddenly … That’s our bloody spa blower. Out I went, pyjamas and bare feet – much to Jakes delight. I lifted the spa cover and pressed the blower button – instant silence. Who else do you blame – Jake. I guess he has jumped onto the spa cover as small dogs will do and applied enough pressure to turn the blower on. I will have to make the rounds of our neighbours to apologise for their irresponsible neighbour.

Mum is not feeling the best at St Catherine’s – she has picked up a bug and her asthma is causing her trouble. They purchased a nebuliser for her and I hope when I visit today it has helped. Each year about this time she heads to hospital for some extra care.

Family Birthdays –

 Keiran – Happy Birthday

Chris-Happy Birthday - Chris and Allison are in Sydney for a short break and Allison is still sporting a couple of fractured toes.

We are close to making a decision on China and the stem cells; if we go it will be to Hangzhou which is a coastal city on the Yangzi Delta, population of about 10 million. The hospital at Hangzhou does both stem cells and BMT (Bone Marrow Treatment). The treatment consists of 5 stem cell transplants and 1 BMT and we would be away about 4-5 weeks. We are heading to Bendigo next week to talk it over with the kids.

Jill is exercising daily – walking at the netball courts each afternoon – it is very tiring. We have been concentrating on distance to built endurance. She is also doing the voice exercises and it all way surprises me the volume she has. It is difficult to translate this into normal speech as with walking she tires quickly when talking.

We got our results from Jill’s sleep study on Tuesday. The specialist asked Jill how long she slept while in hospital. He said well you only slept for 1.8% of the time you were there. They were able to get sufficient information. She is suffering from moderate sleep apnoea. She actually stops breathing up to 50 times per minute. The strange thing that has happened while waiting for the sleep study and results Jill was put on a medication for reflux that she was experiencing at night and it appears to have helped the sleeping. He suggested we wait three months before we do anything else. Maybe those millions of Chinese stem cells will do their bit.

We have been doing some more Family Tree searching. I came across a cemetery site ( Australian Cemeteries) which documented headstone inscriptions and some photographs. I also emailed another site with photographs of other family members and very quickly received a set of photos. The two cemeteries were Bealiba (McDonnell’s) and Moligle (McCoy’s). I was amazed at the information that I could find and was able to add to our family tree. There were some dates and second names as well as family members who I did not know about. My cousin Mary also sent us some information which she had received from our Aunty Kath way back in 1965.

Written in only the way Kath would write

Dear Mary                                                                                                                                                       Maryborough 3-4-65

While searching thro’ family memoirs, I found the enclosed & thought it might of interest to you, Maud told us, that the Keenan’s in Ireland were seafaring people (Ships). One of their 3 sons was captain & it was he who sailed John & passengers to Australia.

John, James & Phillip were their names. James decided to go back with Phillip returning via America. She said their ship never reached Ireland – presumed ship wrecked. Here endeth?????

                                                                              Love to all -

                                                                                                      Kath

Well that’s about all – see you next week on the net

The weather this week has allowed us to make our way to the netball courts for exercise. Jill has received some encouragement in the form of weight loss. On her 6th week weigh in with Kate Morgan she has lost a total of 5.8kg. Emotionally this has been great and she is insisting on the walking exercise – tires her but she is determined and keeps going. We have received lots of information from China in the last couple of days. I sat reading it to Jill and she commented that this was much better information than we received in 2006 when we made the decision to go. I think we also are more knowledgeable about the subject and are asking more intuitive questions. Jill has to make the decision if she wants to take the next step. They are booked until September, so if we are to go before Christmas we will need to decide. The other deciding factor as always is money – fortunately because we are returning the cost of stem cells is the same as the first. The cost is based on US dollars and since the exchange rate has improved the cost is less. The exchange rate when we went in 2006 was 74c to 1 US dollar and it is currently 94c per 1 Us dollar. This may help pay for the increased air flight. The treatment is either in Qingdao or Hangzhou depending on the specifics of the treatment. Qingdao is a coastal city and is the location of the yachting events for both the Olympics and the Paralympics.

Jill’s results for the sleep study are getting close – Tuesday.

I mentioned the family tree search I have been doing with the aid of GSV. We received some more information on John Keenan and wife Ann Keogh. They have not been able to find a marriage certificate. They have not found a birth certificate for their first son William under the name Keenan, the birth certificate for my grandfather James Michael was there except with the name as Michael James (could be just a mistake of the registrar). They did find a William born to an Anna Keough in 1864 at Glengower with no fathers name given. Well the intrigue and search continues. If anyone has any thoughts please let me know.

Well we are late and it is lunch time – so I had better get Jill’s lunch – a packet of Mocca – food supplement- not very interesting to me.

See you next week on the net

Week 104 - 2 years have passed since we embarked on that journey to China for stem cells and while we were walking at the net ball courts this week it brought back some memories. We talked about the improvements that we saw - On our return Jill was able to walk unaided the perimeter of 12 netball courts about 1km. Her speech and writing had improved - no sluring and she was able to write shopping lists. Fortunately the speech and writing have remained stable since China - her walking was comprimised with the fall back in October 2006. I believe that between Jill’s determination , exercise and Stem cells have helped us reach this point.

Another week of retirement, exercise and weight loss (another 500gm) has passed. The weather has been great to sit in the sun and get back for a walk at the net ball courts. I have been reading the emails from one of the MSA patients who has been in China for stem cell treatment and it has encouraged us to email to Jon at Beike for the latest information as to what hospital is doing the best treatment of MSA, current cost and when we would be able to receive stem cells. I will be sitting on the computer waiting for the information. I also asked had they done any research into arthritis in joints – Jill’s left knee has no cartilage left after sports related injuries from hockey and netball many years ago.

We have another week to wait for Jill’s sleep study results; I’m not sure whether she wants to hear.

I received the latest copy of Ancestor which is the journal of The Genealogical Society of Victoria and it prompted to make an enquiry about my Great Grand Father -John Keenan – In his obituary it reported him as having arrived in Geelong aboard the Hibernian in 1852. We have been unable to find proof of this. I sent an email to GSV (they offer members some free research). We received an answer on Friday –

Your research request number is 8429.A ship named “Hibernia” arrived at Melbourne on 3 Oct 1852 carrying 376 passengers according to “Shipping arrivals and departures: Victorian ports” by Marten Symes. The PROV index to unassisted passenger listed does not included anyone of the name Keenan on this trip of this ship.There is a John Kenahan aged 22 years arriving on the “Hibernia” in Feb 1854. We can obtain a copy of this passenger list as your next query.

So it looks like we will need to do some more searching.

There are not many times that I go shopping and meet somebody who asks that old favourite question “Why do you like retirement????”

I saw some of these answers in an email.

Question: How many days in a week?
Answer: 6 Saturdays, 1 Sunday

Question: When is a retiree’s bedtime?
Answer: Three hours after he falls asleep on the couch.

Question: Why don’t retirees mind being called seniors?
Answer: The term comes with a 10% percent discount.

Question: What do retirees call a long lunch?
Answer: Normal

Question: Why does a retiree often say he doesn’t miss work, but
misses the people he used to work with?
Answer: He is too polite to tell the whole truth.

Question: What do you do all week?
Answer: Monday to Friday; Nothing. Saturday & Sunday I rest.

Another milestone for our family – Michael’s birthday next Saturday

Happy Birthday – Michael from Mum & Dad

We are having a visitor this week – Margaret is over in Wangaratta for a couple of days, leaving Barry at home to go fishing.

Jill is ready for breakfast – Kate Morgan Supplement – Mocca

See you next week on the net

I keep trying to think of interesting things to put in our Blog, but usually each week is much the same. Basically getting up, showering, breakfast, massaging Jill’s legs and feet, Vocastim voice exercise (alternated with speech exercises), lunch. Currently to gather Vitamin D Jill sits outside in the sun for a couple of hours and reads ( this is great as reading used to be Jill’s most important thing, often having a couple of books going at the same time).After reading she usually spends about 10 – 20 minutes on the Crazy Exercise machine. This is followed with an hour in the gym doing walking exercises in the parallel bars, stretching and balancing exercises using a gym ball and wall frame, Leg exercises using the two chairs we brought back from China. Then 20 minutes on the exercise bike and then finishing up with ball throwing and catching. The last week has us coming inside in the dark. I know that this sounds like we do nothing but exercise – but it has become a large part of our life.

The diet is still progressing and even though the loss last week was only 300gm, we will take anything. Jill had a fall trying to take a short cut around the bedroom door and finished up on her hands and knees. After a couple of days she is sporting bruises on her legs above her ankles and on her forearms near her wrists and these are uncomfortable.

I received an article from the MSA web site about another MSA sufferer who has been to China just before Christmas 2007. The process of treatment has changed slightly but the improvements were very substantial. The report of his treatment and improvements can be seen on the Stem Cells China site.

http://www.stemcellschina.com/content/view/876/543/lang,en/

there is also an article written about him on his return home to California

http://www.stemcellspuhua.com/n54

Another article was also on Bone Marrow Transplant, which is being done in a combination with stem cells and is also showing some good results for neurological disorders. The following is an article from the Beike site. It certainly shows us that research is moving in the right direction.

Bone marrow transplantation (BMT) is a relatively simple medical procedure being used to treat diseases once thought incurable. Since its first successful use in 1968, BMTs have been used to treat patients diagnosed with leukemia, aplastic anemia, lymphomas such as Hodgkin’s disease, multiple myeloma, immune deficiency disorders and some solid tumors such as breast and ovarian cancer.  At Beike we have been using BMT’s for over one year for diagnosis such as Muscular dystrophy, Multiple sclerosis, ALS and Spinal cord injuries as well as some Ataxia cases and other neurological disorders.  We find them very effective it boasting the potential of our umbilical cord stem cells.  In addition they also “kick in” at a later time than the typical stem cells we use which seems to allow patients with progress disorders to have longer periods of stability. 

My aim is to get Jill back to China – I believe another boost would be obtained by having another Stem Cell treatment .
We will see you all next week on the net

This week has been very interesting with Jill undertaking a sleep study. We spent the Monday doing exercises in the gym, on the crazy machine and using the vocastim voice exercise unit. Jill was becoming more apprehensive as Tuesday evening approached – we had a slight break with a visit to the Chemist -Kate Morgan Weight Loss Centre – late on Tuesday afternoon and to Jill’s delight she had lost some more weight, a total of 1kg per week over the past 3 weeks. Fortunately this tempered her attitude to going into hospital over night. We have kept to the diet very closely and the results are there.

We were to book into the hospital at 8.30pm on Tuesday evening. I parked the car at the front door and we made our way to the evening nurse’s desk. She escorted us to Jill’s overnight room. She told Jill to change into her night attire – unfortunately I had left Jill’s bag sitting in the driveway at home. I left Jill watching TV and went home to pick up the case. The nurse filled in various forms and produced a stack of cables and leads and commenced attaching them to Jill. She measured to attach the sensors in the correct places, attaching sensors to Jill’s head with Vitamin E cream and placing sensors from head to toe. They check breathing, eye movement, leg and arm movement and noise. They also film Jill using an infrared camera mounted above her bed. These are finally connected to a control box and then to their computer at the nurses station. It was 11pm by the time Jill was all wired up, I took some photos of her all wired up , she made me promise that it would not appear on the net – so sorry I always keep my word. The nurse said I could pick Jill up at 6.30am on Wednesday. I set the alarm but did not need it and was on the doorstep at 6.30am and Jill was sitting up – unwired ready to go. I asked the nurse how things went. She said that Jill didn’t sleep very well. My first thought was did they get enough information – she was confident that they would. Jill had been concerned about going to the toilet, sleeping in a narrow bed- thought she may fall out. We went home and had breakfast and Jill got into bed and made up for the lack of sleep last night. We had several phone calls to see how things went but we have another 4 weeks to wait for the results.

The rest of the week was exercises and diet related. On Friday Jill had a surprise as she was heading to the shower a car pulled into the drive and a beautiful box of flowers were delivered – pink gerberas and white lilies. They were from Allison and Chris and the tears of joy ran down Jill’s cheeks. They made up for the anxious previous days.

The weather over the last couple of days has allowed Jill to collect some more Vitamin D. and looking at the sun this morning we will be able to be out in the sun this afternoon.

See you next week on the net.