Mac and Jill

The last couple of weeks have flown and we now only have a week before Jill’s knee replacement surgery. We spent 4 hours last week at the pre operation clinic. We were interviewed by a doctor, theatre nurse, physiotherapist and an occupational therapist. I think we know all the possible out comes – the only one that really worries us is the reaction of anaesthetic on Jill and the MSA. Jill has also had another lot of blood tests and further x-rays. I guess they really need to be very careful. We have had the electrician and plumber here to do some preliminary things prior to changing the kitchen cupboards. I need to change the heating ducting and that means I have to get under the floor, something that I have not done in the past twenty years. I think my weight may be the problem. Over the past few weeks support for an MSA awareness Month has been promoted and Pam sent this letter out. 

The “Miracles for MSA” forum on Facebook and the “shydrager” MSA online support group on Yahoo Groups have been collaborating and brainstorming on the idea of promoting an MSA Awareness Month.  We are being ambitious and are going ahead with doing it in the month of March.  .     

“Miracles for MSA” on Facebook and the shydrager Yahoo Group are open to members from all over the world.  As such, we are adamant that this month be inclusive of ALL individuals and organizations that have an interest in Multiple System Atrophy.   This is NOT a USA event, it is a WORLDWIDE event!   

We are drafting a “press release” that will be shared around the internet and we want to include a list of known MSA charities so that whoever receives the notice will be able to donate or fundraise for the charity of their choice if they are inspired to do so.  Those of you who are affiliated with a charity that accepts donations I would ask that you double check the list of charities below and make sure your details are correct.    Also if you know of other Non-USA charities that would include MSA support, education or research that aren’t on the list please let me know and I will get them added.  All of the MSA community will benefit by more awareness which can translate to more dollars for research, support and education programs.

See you next  on the net

Happy Valentine’s Day to all those that can get over the commercialisation of the event. I got caught up on the hype today and brought Jill a dozen red roses. It is fantastic to see her smile and that isn’t that often these days. In our renovation of our wardrobes I came across a wedding photo of Jill which had been in her parents lounge. A description of it would have been a fantastic photo of my bride some 44 years ago in a plain white frame with the name of the photographer across the bottom plus all the dust that had accumulated over the past 20 years. I decided to have it reframed and to put it in the entrance with the other wedding photos. A bit late for Christmas, our wedding anniversary so the next event that was appropriate was Valentines Day. It is above the fish tank in our entrance – pride of place. Jill hasn’t seen it yet – I hope she likes it as much as the roses.

The last couple of weeks have passed fairly quickly. I have all the renovations, painter, cabinetmaker and builder all organised for the 10 days Jill’s in Hospital. That had a little hiccup as we received a letter to say the operation was now at the Wangaratta base hospital and on the 9th of March. We are attending a pre operation appointment with the doctors, nurses etc on Monday. Jill is apprehensive about it all. I am not sure how she will take it but I am sure she is going to try her hardest to walk. Exercising over the past few weeks has decreased except for the peddle machine and weights. Jill had blood tests on Thursday and this was an event. It took about 3 hours, visits to two different labs. Must admit it was my fault. I went to the easiest lab to park at and get into and after waiting for about an hour only to be told that we needed to go to Gribbles Lab as they had a contract with the Hospital . They had the usual trouble finding a vein to extract blood and it was almost 3 hours later we arrived home.

Finally we are setting Mum to rest with Dad. The plaque is back and we are having a small interment service at the grave and we can add Mum and Dads ashes together under Dad’s yellow rose. This is to happen on Thursday.

Last week we had Jill’s Aunty Jean for a dinner and they made and decorated some cup cakes.

Chris and Nicole have also finished their Balinese Hut with the thatch going on this week – looks fantastic Chris.

It’s time to get Jill up and going – more leg exercise which we hope will help after the operation.

See you on the net in a couple of weeks

The weather certainly continues to be hot. Looks like being another 38C degrees today. I will be glad when the tennis and the Australian Open have finished and we can have some early nights to bed. In between watching the tennis and cricket and ones house duties there is not much time. Pat and Keith visited on Saturday morning for a cappuccino and brought us some eggs. Pat’s back at school with kids starting on Monday. Allison will also be back with her kinder kids this week; I guess she will be pretty tired.

I have been trying to organise the painter, cabinet maker and the rear ramp to be completed while Jill is in hospital having her knee replaced. I’m not quiet sure what is the most expensive, knee surgery, painting or having kitchen cabinets replaced.

Jill has had a couple of visits to doctors this week, On Tuesday the visit to the urologist and on Friday to the Anaesthetist regarding Jill’s knees and he is going to discuss the operation with the orthopaedic surgeon and neurologist as the chance of complications from the MSA worries them. We had been booked into the Wangaratta Private Hospital but he suggested that he may prefer the Wangaratta Base Hospital (Northeast Health) as they have better intensive care for after the operation. So I guess we have to wait on that discussion to find where Jill will have her operation. As a prelude to the operation she had an ECG and blood work done so we hope there is no anomalies that show up. She has to take her CPAP machine into hospital with her so that it can help with her breathing in recovery. I mentioned the new mask; it amazes me how the new mask works so well in comparison to the old one. On Wednesday morning Jill woke with two marks on her right knee (good one) and it appears to be bites, itchy and have now developed little blisters, although I could not see puncture marks. Lorna came over with her grand kids for a swim and she thought they were bites. We have been putting Stingoes on them to relieve the itch. Earlier in the week I had killed a fairly large spider amongst the bed linen while making the bed so I guessed it there was one there would be others, but I inspect the sheets each night to make sure we are all clear.

We received a fantastic DVD last week and watched it in amazement. It was the ultra sound of our first grand child. Jill’s certain it is a boy???. We have watched it on the large TV screen which has the ability to pause and magnify, it didn’t help at all – we are willing to wait to be surprised. Nicole is certain IT has the Gristede NOSE. It’s amazing how babies just look like babies to me and have their own look. That may change when IT arrives and I look for a Keenan or a Sutton or even other family tree members.

I am sitting in the kitchen, listening to Macca and the sound of Sam mowing his lawn and think it’s time to get Jill up and showered.

See you next on the net

Here we are back again – survived the Christmas and New Year. Jill and I have been away at Chris and Nicole’s for a week while the painter moved in and completed the toilet, shower and passage. We went while the weather got hotter and I had hoped that it would be a bit cooler in Doreen.

Nicole had organised that we go to Northland for lunch and to give Jill a chance to do some shopping. We used the wheel chair and even though Jill was not that happy being in the chair it gave us the chance to do something we had not done for about five years. We had lunch in the food court and then proceeded to spend money. I believe Jill actually enjoyed being out. On the way home we had a look at a Balinese Hut which Chris was thinking of putting in the back yard.

The next morning they had decided to precede with the hut but to do the garden first – a couple of hours digging and we went off in search of a rotary hoe. We drove to Whittlesea and hired a trailer and rotary hoe. A few hours later the area was ready for the next stage. They had decided on a dry creek bed and some tropical type plants. While Chris and Nicole went off to pick out the rocks and Plants I laid out the creek bed in preparation for the top soil, weed mat, rocks and plants.

We actually moved about 3 meters of top soil and then 1 met of small river stones and then .75 metre of larger stones and rocks. We sat back and admired our handy work and Chris suddenly remembered the power that we had discussed earlier. We had to move some of the creek bed and weed mat so we could dig a trench 600ml deep and about 5 meters long as well as going under a path. Temperature at 38C and we gave up and decided to get up early next morning. Well by lunch time the trench was completed, the orange electrical conduit with a draw wire inside was buried. Within a couple of hours we were back admiring our handy work.

Friday we decided to go shopping again, this time to Doncaster shopping centre. Another meal in a food court and a few hours of looking at clothes for Jill. She accepted the wheel chair and we were able to move through the centre with ease , into Susan-greys, Myer, up escalators and lifts . It was great to hear Jill tell Chris how much she enjoyed it.

We rested on Saturday and headed home to check our newly painted area. Jessie met us at the front door, probably expecting Lorna who had been looking after her. We have had a quiet week; I picked up Jake from the kennels on Monday. Jill had a doctor’s appointment on Tuesday with a follow up next week.

While surfing the net I found a new pillow  for people that use CPAP masks. The web site is www.contourliving.com  I purchased it through an Australian company called Badbacks. With out telling Jill I ordered it and within two days we had it . It is just called CPAP Pillow. It is supposed to improve PAP ease of use, sleep comfort, neck support and spine alignment and reduce mask leakage, pressure on mask and face as well as mask discomfort. Jill tried it on Friday night and to my suprise she accepted and thought it was great. I have also ordered new silicone mask and insert as the old ones have started to deteriorate. Saturday was the second night and it really helps.

Jill’s legs have continued to get worse. I have just heard a cry from the bed room and as she was getting into bed her leg gave way and she had collapsed onto the floor. In tears we were able to get back onto the bed and eventually into it. March the 4th seems a long way off, for Jill’s sake I wish it was tomorrow.

It’s almost midnight so I will finish this early tomorrow morning.

See you on the net in a couple of weeks.

2010 has arrived and I’m not sure how to say it “Twenty Ten “or “Two Thousand and ten”, I don’t suppose that it matters that much. Santa has been and we had the whole family to help us celebrate. We all went to Kym & James for Christmas dinner and it was great to have the family together.

Just before Christmas Jill had her appointment with the orthopaedic surgeon and she has an appointment to have her left knee replaced on the 4th March at Wangaratta Private Hospital and a stay of about 7 -10 days followed by lots of physio and fortunately we will be able to intensify that in our own gym. His main worry is wether there will be any reaction with the MSA. The pain from the knee has intensified over the past few weeks and Jill would have the operation tomorrow if it was possible.We are going to Chris and Nicole’s for a few days while the painter finishes the passage and toilet. This will depend on how Jill copes with the pain. Jake is of to the kennels (Pet Resort) for a few days and we are going to have Michael’s Gus here to keep Jake company when we come home. Michael is going to the Gold coast for a week.

We havebeen doing some family tree with the help of several close and distant family members. The size of the tree grows daily as we find more extended members. If there is any one that would like to have a look at the tree, send me an email and I will forward the invitation. Joan lent me a copy of a book she wrote about her family “A Portrait of Ordinary People – the Hackett family” by Joan McKaskill.The book was judged – commended in the Alexander Henderson Award 1997 by the Australian Institute of Genealogical Studies Inc. The judges wish to commend two entries.

These are:
Silken threads among the gold by Susan Patterson and A portrait of ordinary people: the Hackett family by Joan McKaskill.

The second work, A Portrait of ordinary people is a beautifully produced paper – bound entry. The book is very short but none the worse for that. It makes effective use of civil records extracts, letters, photographs and family reminiscences. It includes an extract from Mrs Prendergast’s personal journal, and this in particular is delightful in evoking the joys and difficulties of rural life in the early twentieth century.

Amongst some of the other information gathered was a poem by my Aunty Kath which was forwarded by my cousin Edwin. It was written in the 1920’s and mentions her father (James Michael Keenan- my grand father) and a new employee Bill – happens to be her brother and my father. I have included the poem. There is also a second poem by James Michael about those new mechanical devices that will take the place of horses.

I had better close off and we will see you in a couple of weeks on the net.

Another Christmas has arrived and so have our family to celebrate with us. I was reminded in an email recieved today that we will also miss some one who have passed away. Mum loved Christmas and was the first to want everyone to be with her over Christmas and this will be the first without her. She would want us to continue on with family Christmas Celebrations.

Merry Christmas to everyone from us

We will be back on the net for the New Year