Week 369 ” We will miss you Jean”

The past 3 weeks have certainly had its ups and downs. We started with Jean’s 95th birthday and then on the 15 of December she passed away quietly with her family by her side.( 1-11-1911 to 15-11-2014)

She was an amazing person, a second mum to Jill following the death of Nancy – Jean’s sister and Jill’s mum almost 35 years ago. She was a life member of Red Cross , a singer in a local group until 12 months ago , a mother craft nurse, a kinder garden Assistant a Great Great grand mother and a fantastic friend and neighbour. She made sponges for all occasions and when Nicole married Chris she started to make gluten free sponges for our family.  When Jill was having difficulty in visiting Jean started walking to our house , just to be with Jill.We will miss her greatly

Nurse Kneebone and children

Nurse Kneebone and children

Jean Hughes ( nee Jean Kneebone)

Jean Hughes ( nee Jean Kneebone)

 

 

 

 

 

 

 

 

The following poem was read out by her Grand Daughter

 Life can’t be counted in candles
or measured in number of years,
its counted in small joys
and good times and laugh lines,
as well as in heartaches and tears.

Life cant be counted in candles
but in things done with effort and pride —
with dreams followed boldly
and hopes kept alive–
in times when we’ve failed–but tried.

life cant be counted in candles
or measured in years that have flown–
its counted in kindness close friends and love ones,
and all the sweet blessings we’ve known.

~unknown author

WE WILL MISS YOU AUNTY JEAN

Mac & Jill , Michael & Amanda ,Allison & Chris , Chris, Nicole,Riley & Lucas

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Week 365 ” Jean’s 95th Birthday”

IMG_4888 IMG_4889Jill’s aunty Jean Hughes celebrated her 95th Birthday at StJohns in Wangaratta yesterday with many of her family and friends . Born Nov 1st 1919.

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Week 365 “October 2014 – Jill’s Birthday”

I was well supported this last week with the family home and of course Riley & Lucas. They all arrived on Saturday and we went out for dinner to celebrate and remember Jill’s birthday. We went to Rinaldo’s Casa Cucina Restaurant. The meat, service and atmosphere was excellent – Jill would have loved being there – we had been there several times and she had enjoyed  every meal. Especially the desert – tiramisu one of her favourites.

Lucas and Dad at Rinaldo's

Lucas and Dad at Rinaldo’s

Allison and Lucas and the tiramisu

Allison and Lucas and the tiramisu

 

 

 

 

 

On Sunday morning Lorna cut us some of her beautiful roses and we went to sit with Jill and share her birthday. Memories flood back and I wish she was here again. Riley remembers putting the Cowrie shell on the plaque and he was supprised that I had stuck it on. He wanted to know why?

Riley and Grandma

Riley and Grandma

 

 

 

 

 

After our visit with Jill we went to the local Sunday market and enjoyed wandering around as Jill had always wanted to do looking at books to buy. We purchased some strawberries , the boys looked at the toys and some chickens. They were intrigued with the small ducklings in a cage and didn’t want to leave them.We purchased some wooden toys for Allison’s Kinder – we had them on order.

After lunch the kids all headed home and I was alone with my memories once again.

Over the passed few weeks since Pat passed we have been out at the farm helping Keith clean up and prepare the farm for sale. Lots of tools and farm equipment to be sold at a clearing sale . Cattle, sheep and a horse to be sold or relocated in the next few weeks. The market price for cattle not good but they have to go. A steel merchant has been in and collected all the old steel , drums, rusty machinery and we have burnt all the old fence posts and timber we could. The auction is on the 13th December 2014 and the clearance sale is on the 17th of January 2015. I am back out there today as the estate agent is coming on Friday to take photos for advertising the sale.

One of three tractors - Ford

One of three tractors – Ford

Wagon wheels for sale

Wagon wheels for sale

Old machinery on farm

Old machinery on farm

Farm stuff for sale

Farm stuff for sale

 

 

 

 

 

 

I had better get going

See you soon on the net

 

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Week 364 “Jill’s 2nd Birthday in Heaven”

Jill’s 2nd Birthday in Heaven

26/10/1943 – 6/4/2013

26/10/2014

My Darling

The moment that you left me,

My heart was split in two;

One side was filled with memories;

The other side died with you.

I often lay awake at night

When the world is fast asleep;

And take a walk down memory lane

With tears upon my cheek.

Remembering you is easy,

I do it every day;

But missing you is a heartache

That never goes away.

I hold you tightly within my heart

And there you will remain;

You see life has gone on without you,

But will never be the same

Mac

Author unknown

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Week 362 ” WORLD MSA DAY 3rd October 2014 – Forbes NSW”

I left Wangaratta with Allison and Chris returning to Hervey Bay . It was difficult leaving home and Keith knowing how he must be feeling.

We drove north to Narrabri where we stayed overnight and had a meal at the Outback Shack . next day we headed  to Hervey Bay. we arrived late afternoon and I was again settled into my van. The location was in a van storage area but had all the facilities I needed water , power and waste connection. My neighbours had kept an eye on the van and Jeep and welcomed me back to the bay.

I continued my walking as Allison & Chris were staying about 5 k away at Oceans Resort opposite the long pier. I still had a few places to have coffee where Jill and I had and i also found another couple which she would have enjoyed. I had several meals with Allison & Chris at the resort – $10 pizza – pasta night and $12 Steak night. I also watched the Grand final on the big screen at the resort.

Allison & Chris on Jetski

Allison & Chris on Jetski

Allison & Chris at Moon Point Fraser Island

Allison & Chris at Moon Point Fraser Island

Sunset at Hervey bay

Sunset at Hervey bay

 

 

 

 

 

Allison and Chris hired a  Jet Ski and went on an escorted tour to Moon Point on the inside beach of Fraser Island. They were impressed about all the things I had said about Moon Point and the beautiful white sand . We used to take the barge to Moon Point from the Hervey Bay marina for our trips to Fraser Island in the 4WD.

I got to meet with a MSA patient in Hervey Bay – Debbie and her husband /carer Rob. It is always great to be able to talk and discuss the problems that are also common and offer some advice from my experience. I hope that I can continue to do this either by phone , physical or over the net. When I arrived home I had another opportunity to talk with another couple Pam & Richard in Brisbane via the phone and wished I had known about  them earlier so that I could have visited.

The Dish at Parkes

The Dish at Parkes

Coffee & Cake at Parkes Dish with Jill

Coffee & Cake at Parkes Dish with Jill

Junee Chocolate Factory - old flour mill

Junee Chocolate Factory – old flour mill

 

 

 

 

 

My trip home was faster than I had imagined – like always when Jill & I started to head south we just kept going. My first stop was at Lake Broad Water out of Dalby, Next was at Mendooran, visited Parkes Dish and 3rd night at Forbes Free camp along with 50 other vans got to talk to several caravaners . Discussed where they had been, stayed and their vans etc.

World MSA Day - 3rd October 2014

World MSA Day – 3rd October 2014 at Forbes

It was the 3rd October which is WORLD MSA DAY and I lit some candles . Finally I headed to Keiran’s farm for my last night – before getting there I stopped in at Junee Chocolate and liquorice factory. Jill would have been in her element. I had a coffee and banana bread and purchased some chocolate  etc. Finally I arrived at Keiran’s about 3pm. I had a great time there with the perfect site – freshly mowed and power only 5 meters away. I had a beautiful meal – Chevon – slowed cooked Goat meat. I would eat it any time. Thanks Louise. Next morning I headed home arriving early afternoon and neighbour guided me up the drive – I think he thought I may wipe out the letter box.

Goats at Keiran & Louise's

Goats at Keiran & Louise’s

The past few weeks have been busy – out to the farm each day with Keith and other members of the family – decision has been made that Keith will move north to be close to Kym and her family. The farm is to be auctioned on the 13th of December and a clearance sale on the 17th of January. Lots of things to happen over the next few weeks.

 

 

Riley drawing

Riley drawing

Lucas out for a ride

Lucas out for a ride

Riley ( Batman) off to party

Riley ( Batman) off to party

My boys Riley & Lucas have been to Melbourne Zoo yesterday and had a great day and they told me all the animals they saw.

Inside Miclael & Amanda's new coffee/ hair lounge

Inside Miclael & Amanda’s new coffee/ hair lounge

Inside Miclael & Amanda's new coffee/ hair lounge

Inside Miclael & Amanda’s new coffee/ hair lounge

Inside Miclael & Amanda's new coffee/ hair lounge

Inside Miclael & Amanda’s new coffee/ hair lounge

Michael and Amanda have been working to get their new coffee/hair lounge open in the next few days

I can hear a lawn mower working and that is reminding me that our lawns need mowing so I he’d better get out there

See you soon on the net

 

 

 

 

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Week 358 “MSA 101: Basic MSA information to know”

MSA 101: Basic MSA information to know

For a very good overview of MSA please watch the video presentation by Dr. Kathleen Poston

For the newly diagnosed or those still seeking a diagnosis these articles should be read and shared with your doctors.

1. Top 10 things to know about Multiple System Atrophy.  Written with input from the collective experiences of MSA patients and caregivers who have participated in the online shydrager Yahoo support group since 1995.  This list touches on many things not normally highlighted in medical literature about MSA.

2.  Second Consensus Statement on the Diagnosis of Multiple System  Atrophy.  This was written in 2007 by a group of the world’s expert clinicians and researchers.  This is the correct and most up to date definition of Multiple System Atrophy… accept no other!

3.  A brief review of Multiple System Atrophy by Professor Niall Quinn.  This was written in 2012 by one of the world’s leading experts on the disease.

4. I nicknamed this article “The MSA Bible” because of it’s length and in depth description of MSA, it includes a very good description  of treatment options available for many of the most troubling symptoms. Unlike the bible this article is updated regularly as new information is discovered about MSA.

5. Progressive Late-Onset Cerebellar Ataxia.  Very good review of all tests that are available to rule out various causes of cerebellar ataxia. “In patients over the age of 50, a rapidly progressive disease course should prompt reevaluation for Multiple System Atrophy”.

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