Harry and the BBC

This is not a media report (thank goodness!)  In my house BBC is an acronym for, 'Boring Brown Cup.'  Huntington's Harry has been throwing his weight around once more.
Less than a month ago Merv was enjoying his morning cup of tea after breakfast.  I was in the bathroom when the heard the gasping sound of choking.  I flew down to where he was sitting.  He had brought up some of the tea but he could not get his breath.  He began to panic.  I was talking to him while providing first aid for choking.  In desperation he lifted himself up from the chair which allowed him to clear his airway and he sat exhausted back in his chair.  Merv had choked on numerous occasions over the last four years but I had not witnessed anything like this. 

I am not a speech pathologist (who is trained in eating and drinking issues) but I refused Merv further drinks unless he used a straw.  I contacted the speech pathologist and she visited the next day with her stethoscope to listen to Merv's swallowing.  She concluded Merv must continue to use a straw in both hot and cold drinks.  This wasn't so difficult.  When we had lunch out I put a straw in  his beer glass and he did not complain.  I straddled a straw in his small cup of tea, which looked rather strange but he did not complain.

Last week Merv was drinking water through a straw when he drank too much and once again choked.  If the last time was a ten out of ten, this was at least an eight.  I emailed the speech pathologist.  She insisted she visit straight away.  I rearranged the day to allow her visit.



We hadn't expected her to bring the BBC, but she presented it to us and explained it allows only 10ml of liquid to be released each time the cup is tilted to drink from.  It is called a, 'Provale Cup.' It has taken Merv almost a week to get used to it.  Due to the limited flow, Merv now has to drink more frequently to ensure he is well hydrated.

It is only a cup, a lot like a takeaway coffee mug with a handle.  I imagined Merv's beer in the BBC.  I imagined going out for lunch and having to pour his drink into this now alien cup.  I couldn't think about it.  I got on with pulling the three parts of the cup apart, filling it with water and replacing it later with Milo or tea. 

The speech pathologist isn't 100% sure the BBC is right for Merv.  To buy the cup it costs $160 from the disability shop and just over $60 each online.  I am sure it costs $5 to make in China!  Until we get the thumbs up we will continue to use the borrowed BBC, emptying and refilling it constantly.


BBC Provale Cup



Eleven Months

We have a new edition to the family.  It's taken eleven months, a lot of preparation, form filling and apprehension of approval.  On Monday a van pulled up in our driveway and our 'baby' was delivered.  The story began last August with a letter stating Merv's appointment was scheduled for January.  Even though I complained over the phone we were kept on hold and our appointment was not changed.  We were given a foster one to use while we waited.  We did make good use of it, taking it out and putting it through its paces.  It did well and met all our expectations.
I gather you are wondering what the heck I am on about?  Well, we (should I say Merv) is the proud owner of a brand new Invacare wheelchair.  It has remained unnamed.  What do you nickname a wheelchair?  Would you go cute with; 'speedy' or old fashioned with, 'Arnold' maybe 'Arnie?'  that has a nice ring about it.  I will suggest it to Merv.  I wonder if he will laugh or think naming a wheelchair is taking things just a little too far.


New addition to the family, Arnie!

Arnie has all the regular features, he is all black, he's not Italian but could pass for one.  He is upper class with his brakes on the wheels and another set on the hand grips.  No more racing down hills with the wheelchair taking me on an Olympic sprint.  I am in control.  Though we will continue to avoid steep hills, it just can't be done!  Merv is 90kgs and I am only 60kgs!
We are so relieved the chair has been approved and finally delivered to our door.  It is valued at $1200 AUD and has been fully funded with government funding through the Occupational Therapy department at our local public hospital.  We are very thankful.
Though the winter chill continues to dampen our desire for long walks, we are already planning a multitude of spring walks (with Merv in his wheelchair).  I smile as I can see us together, the picture complete with a picnic basket full of delectable goodies and the sun shining in a bright
blue sky.  I can hardly wait!

Six Fresh Eggs

six fresh eggs from my little sister

Little sister has a hen house with a small number of laying hens.  I was thrilled when I received six newly laid eggs to do whatever I wanted with.  There is always a dilemma.  The expected;  scrambled, poached or fried.  Then recipes with extra staples needed; cakes, puddings and quiches.  I asked Merv if he wanted our family favourite; the scrumptious zucchini slice but he shook and head and asked for an omelette. 

Day 1 we whisked up eggs with milk, grated cheese, seasoning, diced bacon, diced tomato and capsicum.  Our resulting omelette was the size of a dinner plate and a mean meal of delight to devour.  We took no time in judging it a 9/10.



Day 1 - a mighty omelette

Day 2 another of Merv's favourites.  No culinary skills needed.  A box with chocolate sauce pudding mix, an egg and some milk and in only minutes it was ready to pop in the oven with the expectation of warm syrupy sauce and light chocolate sponge.  I would be just happy with the pudding but Merv's eyes lit up when I added custard (from a carton) and a big plume of whipped cream.  Merv sighed with heavenly pleasure and gave my packet mix creation a 10/10!





       

Creating Chocolate Sauce Pudding

Merv's chocolate delight

Day 3 time for a little variety but still sweet and warm.  I gather bowls, whisks, measuring cups, flour, milk, and the last of my treasured fresh eggs and create a batch of blueberry pancakes.  I delight in making them big enough for Merv and tiny ones for me.  The frypan is hot and well oiled and they sizzle and bubble in the pan, teasing me with their aroma.  Finally we sit and share our spoils with a fresh cup of coffee (Merv has Milo).   I judge my blueberry pancakes without a
doubt 10/10
Thank you little sister (and your feathered friends) for my fun week of creating tempting delights in my kitchen.


     

blueberry pancakes




 

Big Bad Harry's Pain

Marion* cried as she shared her story with me.  I cried with her.  It could have been my story.  I had shared my story of Merv's journey with HD.  My voice wavered as I told her about his father's diagnosis and our decision to go forward with HD testing back in 1994.  My voice strengthened as I shared our journey after we found out Merv was HD positive.  We put a lot of living in a short period of time.  We knew what was coming but in many ways we kept our heads in the sand and just enjoyed life to the full.  We have been fortunate in many ways and I am grateful for that.
Marion's story was so different from mine.  She had met Peter* when he was twenty five.  His mother had HD and his two sisters and his elder brother had been tested.  His brother was positive and one of his sisters.  Peter had found this confronting and chose not to be tested.  Marion went along with his decision.  Peter's siblings who were HD positive paid off their homes, watched their diets and took exercise seriously.  They volunteered for research programs, some of which they felt were helpful.  Peter and Marion travelled, spent their money and avoided any discussion about HD.  He was not able to take out life or income insurance due to his risk of HD.  Peter reached fifty and Marion noticed he was letting things slip, bills were unpaid, his job was at risk.  Peter refused to listen to her.  Only a few years later he refused to go out socially and found fault with everything.  She couldn't take anymore and took a break.  She stayed with her sister in Queensland for six months.  When she returned she insisted Peter see his GP who referred him to a specialist.  He was tested for HD.  The test returned positive.  Marion wasn't surprised but they were both devastated. Peter's siblings encouraged and supported them.  Suddenly their lives were filled with medical appointments, service providers, OT's and the like.  Marion said they were both frightened and overwhelmed.
Marion asked herself why they had let this happen.  She told me if she had her time again she would have asked Peter to have the test before they married.  No matter the outcome they would work together to have a brilliant life together.  She thought about the preparation and support they had missed out on.  If only they had trusted each other enough.   If only she had realised their love for each other would have been their support.  Marion went on to say she was felt so defeated she went back to Queensland for twelve months while Peter moved in with his eldest sister and her husband.  Marion returned to Perth only a few months ago.  She said she stills feels cheated of a life which could have been so different.  Peter's fear and avoidance had been their worst enemy.  She had been afraid to suggest Peter be tested and support him all those years ago. 
Marion doesn't know if they will ever live together again, she imagines Peter will need to go into a home before long as his sister also has HD and her husband is finding it difficult to cope with the extra work.
All I could do was hug her and listen to her story.  I had no wise words to share with her.  I know there are many in the same dilemma.   Big, Bad Harry is back on the prowl.
* Names have been changed