Everything's fine, I think......

What a week....

 

In the diary for Monday - walk on Malvern Hills with friend K.

At 8.15, just as I was about to leave for my friends house, Mum rang in a total panic.  Dad had collapsed and she couldn't get him up again.  We called for an ambulance and they checked him out.  His heart is fine.... it was just a combination of fatigue, a virus and dehydration.  A lot of water, sleep and some antibiotics have worked their magic over the rest of the week.

Unfortunately he knocked Mum quite badly on the way down so she was bruised (not great for an elderly HD sufferer).

I spent the day round at their house, generally looking after things and getting Dad to his own Docs later in the afternoon.

 

In the diary for Tuesday - coffee and catch up with fellow 'escapee Music Teacher' S.

Fortunately she texted to say that she had one of the bugs that's going round.  I used the day to sort out a few more things for Mum and Dad.  I also did my own food shop for the week while I was in Droitwich.  I found that I was a bit 'wiped out and emotional' after the unexpected stress of the previous day.

In the evening we went to the Marcos Motoring Club monthly meal at a pub near Pershore.  I wasn't really in the mood to be sociable... and a couple of people in the club really pushed my buttons during the meal.  I know I was just over-tired so I'm not going to hold it against them!

 

In the diary for Wednesday Evening - Saltway Quilters Meeting with friend and next door neighbour J.

My first ever visit to a Quilters Meeting.  The group are really friendly and welcoming.  We'll  definitely go again.

 

In the diary for Thursday - coffee and catch up lovely ex-colleague C.

C. texted me while I was at the Quilters meeting to say that she was swamped by work/planning and marking and would prefer to re-schedule our catch up to next week.  I made the most of the unexpected free time to do several loads of washing .... and several happy hours of quilting!!!

 

In the diary for Saturday Evening - '90 Years of Romance' meal out with Mum and Dad

This weekend is the 67th anniversary of Mum and Dad's first date AND the 33rd anniversary of mine and Mark's first date, making 90 years of romance in total!  Sadly we took the decision on Friday to postpone this meal because Mum and Dad aren't really well enough at the moment for a big meal in the evening.  We hope that we'll have a meal out together in a couple of weeks time.

In the meanwhile I made a curry from scratch for the two of us and we enjoyed a nice bottle of wine.

 

I hope that this week is going to be a little bit more like the schedule I can see in the diary......

No surprises please!!!!!

Jx



Belated New Year's Resolutions.. In Verse

Extract from "To An English Friend in Africa"

by Ben Okri

 

"Time is now a gift for you
A gift of freedom
To think and remember and understand
The ever perplexing past
And to re-create yourself anew
In order to transform time.

 

Live while you are alive.
Learn the ways of silence and wisdom
Learn to act, learn a new speech
Learn to be what you are in the seed of your spirit
Learn to free yourself from all things that have moulded you
And which limit your secret and undiscovered road.

 

Remember that all things which happen
To you are raw materials
Endlessly fertile

Endlessly yielding of thoughts that could change
Your life and go on doing for ever.

Never forget to pray and be thankful
For all the things good or bad on the rich road;
For everything is changeable
So long as you live while you are alive."

I heard the whole of this rather wonderful poem for the first time this afternoon.
If I had the gift of being able to write poetry, then I think my hopes and aspirations for 2018 might have shaped something a little like this.

It's hard to put my finger on the feeling exactly....I just feel as if it's taken two years to completely disentangle myself from the stresses of my old job.  I also spent a lot of 2017 very pre-occupied with worries about Thomas; family concerns; major house maintenance projects and HD stuff.  I was happy enough on a day-to day basis but very reluctant to make any major commitments beyond my private teaching, walking dates and regular 'coffee and catch ups' with my oldest/closest friends.

I've moved into 2018 with far more energy - physical, emotional and intellectual.  I think it can by partly attributed to the fact that we've moved back into 'worry-free' cat ownership.  It must also be a result of the life-changing news about HD just before Christmas.  I actually feel like I want to get my teeth into a proper project again.  One that might exhaust me a little, or take me out of my comfort zone.  I haven't got a clue what it might be... but this year I'm open to the potential.

"Watch this space..."  as they say!
Jx

 

Have you seen the news?

Did you see the BBC news yesterday?

For me and my sister this is life changing.

I am SO excited.

 

Coincidently, Mark went on a pension planning course last Thursday and we were just starting to consider how we would deal with the 50/50 chance of me having HD that starts to show at 60.  Mark is only three months older than me so we would both take a large hit if we pulled pensions down early.  However, if we can make it to 67, we'll be masses better off than we are now.  Crazy.  However, seven years of HD does a lot of damage, so Mark would have wanted to take the hit and spend the time doing nice stuff with me.

 

Now we the prospect of choices.  Treatment's not the nicest of procedures but it keeps a lot of much more horrible stuff at bay.  I can see a future where I can manage my HD (if it develops) and we can still do the walking breaks and motor sport stuff that we love.  I hope that I'll be able to continue playing and teaching for as long as people enjoy learning from me.

 

This is an immense moment.........

Jx

My Brave Mum.. and a Thomas Update.

Over the last few years my Mum has taken part in several research studies aiming to improve future management and care of Huntington's.  She knows that she's unlikely to see the benefits of these herself.. but she's keen to do everything that she can.  Generally these have been talking or co-ordination tests, with some monitoring of brain patterns etc.  Nothing too invasive or painful, just time-consuming.

On Sunday she left some paperwork with me that outlines the latest research project.  This requires a completely different level of involvement from the patients.  Basically she will go through a screening programme - then donate some of her cerebrospinal fluid (which surrounds the brain and spinal chord) for this latest research programme.  The CSF will be used to identify and evaluate biomarkers and pathways for HD (and other conditions).  It will also allow the researchers to develop a greater understanding of the Huntington protein, which causes HD, and some chemicals produced by the brain that are also thought to be closely associated with HD.

I'm popping round to their house tomorrow morning to find out exactly how serious she is about taking part.  Knowing my brave and determined Mum, I expect that she's pretty set on doing it. 

I think I've said it before... but I'm always super-proud of my Mum!!!

There's better news on the Thomas front too.  He's responded well to the increased level of pain killer and has lost the 'distant' look in his eyes.  I think (hope and have EVERYTHING CROSSED) that his time on the planet may be counted in weeks again.. rather than days.  He wanders round the house, cursing the heat and generally shouting at me for non-specific failures.  That's Thomas 'back to his normal self' for the moment.  Thank you (and purrs) to everyone who left a comment on my last post.

Hope you are all enjoying the weather!
Jx

Yeah.... We did it!!!!!!!!!

Mum and Dad were super-anxious when we set off on Wednesday morning.

There were so many things that could have gone wrong... but we dealt with the challenges as they came along and had a really nice time.  I think my role as 'useful third person' contributed to this, but it's also fair to say that Llandudno is a great place to go with someone who has mobility issues.

 

We stayed at The Grand, which is right on the sea front and has fantastic views.

It's a cheap hotel to stay in and is very popular with coach parties.

(We chose it because we didn't know if Mum was going to cope with being away from home, and we didn't want to waste too much money on expensive rooms if we were forced to leave early.)

As it happens, the views from Mum and Dad's balcony were worth millions...

This was the view to the right, over the town and towards the edge of Snowdonia..

 

This was the view straight ahead across the bay...

 

And this was the view to the left, along the pier...

 

We were allocated a table on the edge of the dining room, with more superb views and plenty of space.  A seagull became convinced that Mum's hand movements were going to result in food, so it came to watch her eat at some stage during most meals...

 

The hotel keeps costs down by operating a buffet service for meals.  This is problematic for someone with HD so I got Mum's meal first, while Dad got his own, then they started eating while I quickly got my meal and caught up.  It worked ok because Mum has to eat slowly and I'm a fast eater (a teaching legacy I suspect!!)

 

On the first morning Mum managed to walk with her frame to the end of the pier...

 

 

..... then it was time for a coffee stop!

 

After lunch we even made it quite a way along the Promenade...

 

By the end of the day Mum had walked further than she had done for months.

We were all a bit bothered about how she was going to feel in the morning....

 

....To everyone's delight the gentle movement on the flat had loosen up some of her muscular problems, so we decided that everything was ok to drive up to the car park at the top of the Great Orne (the peninsular above the town).  Here's Mum with the spectacular view towards Conwy and Snowdonia...

 

Then Mum noticed the Tramway..... and the next thing we knew she'd decided that she was confident enough to tackle the steps (so typical of her fighting spirit when she's on form!).  Mum and Dad had an interesting hour riding the tram down into town and back up again, while I had a walk between the upper stations and took a few photos.

 

 I think the break/sea air did everyone a lot of good.

(Mum and Dad are very close, but they do drive each other a bit mad sometimes...

It was nice to be able to step in and 'head off' some situations before Dad's patience was tried and Mum got fractious - a difficult feature of the way HD affects the brain). 

I hope that we can do something similar later in the year.

 

AND the house was mostly in one piece when I got home!!

Jx

Door Opener in Chief!!!!

In just about an hour I'm leaving for a short break in North Wales with Mum and Dad.

Thomas was completely unimpressed with the idea that one of his 'servants' should be even considering the possibility of leaving him...

 

 

After all, who's going to fill his food bowl at 4.30???

Male servant never feeds him before 6.00!!!



 

I hope everyone plays nicely!!!!!!!!!!

 

 

I hope I don't come back to this scene when I get back on Saturday!!!

 

Basically Mum and Dad have always loved going away, and travelled extensively before this stage of Mum's HD took hold.  Last summer they had two holidays that didn't really 'work' because of Mum's needs and they lost all confidence in travelling, even cancelling a trip to a cottage with all the family at the end of October.

 

These three nights away are a kind of 'test trip' to see if we can find the right elements of a holiday for the next few years.  I'm going along to open doors for the wheel chair, share the pushing and help to keep everything calm.......

 

Will report back at the weekend.

Jx

Celebrating 50 Years...and Other Nice Stuff

On Wednesday evening last week my Mum celebrated 50 Years of Mother's Union membership.  Here she is (in the plain purple top) with the some of the other ladies of Claines Mothers Union, my Dad, me (right at the back) and my sister (second from left).

 

 

It was a really poignant evening because, coincidently, the speaker for the evening was from the Huntington's Disease Association.  This meant that the group first heard about everything that Mum had done for the organisation (in Oxford, then in Manchester and lost recently in Worcester) then they heard more about the challenges of having a disease like this in the family.  They particularly became more aware of the health issues and enormous decisions that it creates for myself, my sister and her girls...

 

But most of the evening was about celebration.

Mum received a huge bunch of blue and white flowers (the colours of the Mothers Union)

 

We all chatted.....

(Mum's HD means that she rarely smiles, but she was really happy here!)

 

...and ate plenty of cake

AND FINALLY... my silver Disco has arrived!!!!

 

 

Although a small failure of a connection piece and a hose meant that she came home on the back of a recovery truck this lunch time.  Fortunately my wonderful husband has already found the fault and will be able to fix her tomorrow morning.

 

 

I hope that you are all enjoying the Easter weekend.

Jx

 

 

In Celebration of the Unexpected..

Since I last posted I've gained another harp pupil!  She rang last week and said that she'd love to pop round for 'A Harp Experience'.  She's a retired lady with lots of musical experience so we planned a session for yesterday afternoon.  I'd planned it as a 'one off' very much in the style of 'A hot air balloon experience' or something like that.  I prepped both harps and had them set up for her, side by side, so that she could chose.  I also put the kettle on so that she could enjoy a cuppa while we played.

Well.. she liked it all so much that she wants to come on a weekly basis for 30 minute 'proper lessons'.  It's perfect because she wants an early afternoon slot on Wednesdays - which is a time when I'm generally at home and it's some distance from the slots that I normally offer my younger pupils.

Then, yesterday morning, I received a text from one of my other 'Music Mums' asking is she could pass my details onto another family.  Fingers crossed that I receive another phone call in the next couple of days...!

Then, last night, we were offered free tickets for an Autosport show in London.  Sadly we can't make it because there's a clash with a trip to Pembrokeshire.. but it's so lovely when people think of you and ask.

AND.. while we were at the appointment with the specialist about the lift on Tuesday.. Mum tried out some wheeled walkers.  These aren't really recommended long term for people with HD and Mum didn't get on with one that she tried at Worcester Hospital. However they had masses of different designs at the show room in Malvern and she found one that suits her needs perfectly for the moment. Even better.. they had one in stock so she could take it home immediately. 

It's given her back some confidence and she's having a go at walking across the lounge and dining room.  Her personal goal for the Spring is to get her legs moving again so that she can walk with the frame to the end of her close.

In case you haven't guessed.... I'm immensely proud of my Mum.
Jx

New Look Mondays

Over the last 18 months I've been 'keeping the financial wolf from the door' by building up a small practice of private pupils.  Almost everyone has come to me through word of mouth, so they know the bigger picture of Mum's HD and the potential pressures it can put on my life.  It's taken a while to get used to starting work at 4.30 and finishing between 6.00 and 7.00 - depending on the day - however I really enjoy the chance to teach without the politics of working in a large institution.  On the whole, it's working well.  People respect me and give me plenty of notice if sessions have to be missed.  Generally we can re-schedule sessions within the week so I have a pretty steady income.

The only family who consistently messed me around - arriving extremely late and cancelling sessions at very little notice - happened to take up the 5.00 until 6.00 slot on Mondays.  Now this happens to be a 'pinch point' in Mum's care.  It all came to a head just before Christmas when the family simply failed to show up entirely.  I'd come home to wait for the them and. as a consequence, my Mum had to spend an extra two hours in an upstairs room with a cup of tea and a sandwich.  I was livid (largely on my Mum's behalf) and texted the family asking for payment.  They refused to pay and the father sent me an extremely rude text back.  The upshot of all of this is that I contacted them in the new year and explained that I was no longer in a position to teach the girls.

Yesterday was the first new look Monday... I had a quiet day at home, practising for a concert on Sunday, trying to bring some order to our chaotic guest bedroom and doing the washing.  Then I went round to my parents at 4.00 to make Mum's dinner, while my Dad got ready to go out.  I sat with Mum while she had her meal, made her a hot drink and made sure that she had everything she needed until Dad got home.  At 6.00 I popped home to teach a lovely pupil who comes for a harp lesson from 6.15 until 7.00.  It all worked out brilliantly.

Today I'm spending the afternoon with my parents.  People with HD have such erratic movements that they struggle terribly with going up stairs.  A standard stair lift would be quite dangerous for them so the HD association recommends the installation of a proper lift.  My parents have been thinking this over for some time.  It's obviously an expensive solution but it will keep Mum at home for a lot longer, so it's going to be money worth spending.  They've identified a section of the utility room, which goes up into the little bedroom/office, which they think would be a good site for the lift.  This afternoon we're going to a mobility specialist in Malvern to get the whole project going.  I'm 'riding shotgun' because my Dad is really hard of hearing and he doesn't want to misunderstand what's said!

Between times I'm still practising, trying to complete the guest room tidy up, ironing and teaching from 5.00 until 7.00.  As I texted to my friend earlier today.. "So much better than work!"