JJ’s First Xmas

JJ seemed to enjoy his first xmas!!   He certainly enjoyed opening all the presents even though he didn’t know why we were having a mad present fest this particular day!  🙂  (must have thought it was his birthday!)

 

This was the first day they played in the same room with food in treat dispensers,  but of course it doesn’t give them as  much space to fling their toys about without getting in each others way.

 

I let them take turns having a go at unwrapping their big present to introduce the concept of them taking turns to do something.

    

I often get them to sit or stand and pose for photo’s I think it’s good for basic obedience,  they are learning sit,  stay and wait.

“Look what Santa Paws bought us! “

As I only got JJ in November,  this first month has just been about settling in,  learning our routine,  building the relationship up between him and Inca and learning the basics ie toilet training , basic obedience and learning to walk alongside my chair/scooter.

Of course I also use sign so he’s learning the signs as my speech isn’t very consistent and depends on my muscle tone.  Sometimes it comes out clearly,  other times I struggle to get words out at all.  I find it harder when having to speak longer sentences with more than a few words strung together as of course it’s taking alot more co-ordination between my speech muscles and breathing which are all affected by the Ataxia.  Due to this I’m also starting to use a whistle for recall as sometimes I can get a whistle sound out and he comes in instantly but again its not consistent, so hopefully a whistle will help.

So far he has learnt the following commands/sentences in speech/sign:

sit,  stay,  down, wait, no, ok,  on,  off,  ride,  pick it up,  pull,  give,  off the road,  on the path,  on the grass, wait for Inca, paws up, paws off,  toilet,  tell and most recently ‘socks off”!

JJ had a go at pulling my socks off last night!

Most importantly the relationship between them is improving which I need for him to be able to learn from Inca directly,  so she will tolerate him been in same room as her when she is ‘working’ and so he won’t pester her and be trying to jump on her or play when she’s trying to do a job for me.

Initially Inca was not keen!

 

learning to be together

 

Inca’s getting more relaxed near him

Inca doesn’t seem to growl and snap at him as much outdoors even when he tries to kiss her as they’re walking along side by side! ..  Due to heavy rain I haven’t been able to get into middle of a field with him to let him off lead safely away from cars.  I was worried he would either take off over ground I couldn’t follow him on or pester Inca and it end in a fight and I wouldn’t be able to get to them.

They have been playing  in the garden seperately cos as soon as Inca came to see what he was doing,  he took it as she wanted to play and would go charging up her and she’d get nasty with him,  same if I let them out to toilet together so neither dog would end up actually going to the toilet.  Inca was also snapping at him if he had a toy in his mouth,  although she showed no interest in playing previously other than with toys that have her food in!

walking side by side

.. and checking out stuff together

I feel we’re ready to take the next step now so once JJ’s whistle has arrived and we’ve had a bit of training around house and garden,  I’m planning to take them a little further where there’s an enclosed tennis court we can go in to start with and see how they go on off-lead together in there with lots of treats and a couple of balls!!  🙂

 

 

 

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JJ’s first Walkies!

Yesterday JJ could come for wallks with us for the first time after his vaccinations.

We went with scooter first,  he enjoyed sitting on the footplate and watching things go past.

JJ enjoys riding on the footplate

He was a bit nervous at first of all the noises it was bin day too which didn’t help loads of people dragging bins about and big refuse trucks,  he didn’t walk much of the first walk but got off to explore on some grass when we got to a quieter bit. Later in the afternoon we went to a quieter path like a woodland area that cuts through an estate opposite,  he walked more of that and started feeling braver and going further from me.

JJ wanders ahead following Inca

This morning I decided to go in powerchair to the little park.. maybe not a good choice!  Apart from the fact he was heavy on my arms (he already exceeds weight of most puppy carriers 6-9kg) we had just got through the gate and there was a load of dog walkers walking their dogs together with about 8 dogs off-lead.  They all came charging up and JJ found it a bit scary.  He managed to get under the front of my chair so of course then I couldn’t move in case I ran over him. I had to sit and wait for the people to get to us to call off their dogs and one of them to help me get JJ from under the chair!

Inca’s protective instinct seems to have kicked in and she was stood at side of my chair growling at a large chocolate lab so he couldn’t get to JJ’s face… then further around a large dog came running over to us..  again, owner miles behind.  I think it’s a Newfoundland so looks like a giant brown bear so again JJ was trying to get behind my chair.. I managed to grab top of his harness and pull him up on knee before he got too far round the back of me whilst Inca charged at the other dog which slowed him down temporarily but he still came right up and he’s right in my face as I was sat in the chair lower down,  with JJ trying to scramble over my shoulder!

So we won’t  be going in there at that time again and probably wait until he can easily manage the whole walk and is bigger to protect himself.

have the big dogs gone now mummy?

On a practical level managing two dogs and a wheelchair/mobility scooter is a challenge,  especially when one of them is too young to go off-lead at all and understand things like ‘go round’ where cars park halfway on pavement.  What I did was buy a Mikki Jogging lead,  it has an wrist strap.  In the chair I slipped seatbelt through it to secure him on my knee and took one extending lead attached to armrest.  When we were near road Inca was at side of me on extending lead (locked to a certain length close to chair) and JJ on my knee secured to my seatbelt with the jogging lead,  then when we got to park Inca came off-lead and put JJ on the extending lead so he could walk around.

On the scooter it worked out better to fasten jogging lead to scooter armrest and have Inca on that where she needed to be on-lead to cross a road etc so I still had that hand free to keep hold of the top of JJs harness (sat between my legs on footplate).

wristband of jogging lead is fastened around scooter armrest

Inca on lead before we go to cross the road

JJ was on extending lead with the chunky handle under my leg,  I found it easier to keep it in place with one hand on his harness and both legs around him.. good job I can steer scooter one-handed!  When Inca was off-lead I had extending lead handle in left hand when JJ was walking alongside too.

I let him walk as soon as we get off main road as I live on quiet cul-de-sac so don’t have loads of cars flying up and down in the middle of the day and he is learning to sit nicely at the kerb just before we reach my house.

learning to sit at the kerb with Inca

Just hoping he gets more confident quickly as he will grow so fast and soon be too big to sit on my knee in the chair.  For now we will stick with the scooter and hopefully he will be soon be walking around the village confidently alongside me and Inca!!  🙂

Inca’s little brother!

We have a new addition to the family.  Meet Jesse-Jay!!  He will be known as JJ for short.

Jesse-Jay (JJ) 2 months old

I knew Inca getting used to him would be a challenge,  after all she has been the ONLY dog in the house for 11 and half years and had my undivided attention.  But I was stuck in a situation where she is not getting any younger, and I need a dog to be able to remain independent in my own home at least.

I looked into the route of a trained Assistance Dog,  the waiting lists are long.. 5yrs on average for most for first time owner.  (18months – 2yrs  for replacing retired dogs if you already had one) I heard of one lady who’d waited 7yrs for a Hearing Dog and as far as I know she is still waiting. As Inca will be 12yrs old next March that was not a practical solution for me.   I also decided after looking at many breeds and crossbreeds,  that what I really REALLY wanted was a pedigree Border Collie,  if this was going to be my last chance to manage a dog from a pup again.

He is a couple of months younger than Inca was when I got her. But he seems very bright even at this young age!  I’ve tried him out on a few of Inca’s interactive food puzzles already and he doesn’t take long to catch on at all!  Toilet training has been a breeze too!

JJ loves chasing his treatball

it doesn’t take him long to figure out this basic puzzle!

Inca didn’t want much to do with him when he first came and her body language was very obvious when he came anywhere near her.  I couldn’t even get a pic of them anywhere near each other at first without her snarling and snapping at him,  but she has got used to him and armed with bits of sausage to reward her for letting him gradually nearer (while under my control on harness and lead)  she is gradually getting used to him!

JJ tries to get closer and shows her his tummy (submissive sign in doggy language)

Getting closer but Inca’s still not keen!

some improvement today. down-stay..

and sit!

So… we’re getting there!!!  . hopefully by the time he can come out for walks with us  – about 3 weeks (Vet says one week after his second vaccination) I should be able to get them walking side by side so she can teach him how to walk alongside my scooter.

We’ve had bad rain for most of his first week so the back garden has been too soggy and muddy to take powerchair in to ride over grass,  so that’s next on my ‘to-do’ list for this next week as we’re due a cold spell, so the grass should be nice and solid!

So over the next few weeks, weather permitting I’m planning to have sessions with him in garden with powerchair so he can get used to the noise and walking at the side of me,  before we attempt our first walk in the great outdoors together!!  😀

Help Yourself!

After reading several links on Facebook about the state of the country and help for those who need it and my own experience of trying to get diagnosis and help from the NHS I have come to the conclusion that we don’t stand a chance basically unless we have the intelligence to work things out for ourselves!

When I tried to get help with my speech years ago when symptoms were just starting an ‘expert’ was sent out who expertly concluded I just ‘sounded deaf’!  (I’d been deaf since age 16 at this point age 35.. and having been born hearing,  had managed to not ‘sound deaf’ for the previous 17 years)

I’ve had a Neurophysio visit who showed me some back exercises which incidentally I was already doing on Wii Fit (the bridge exercise and crocodile stretch one) I asked about splints to help me with maintain walking I was told the NHS wouldn’t fund them for just a few steps with assistance as this is not considered ‘functional walking’… however.. try applying for an NHS powerchair whilst you can still stand and take a few steps to transfer..  THEN.. when they need to avoid having to issue too many.. it DOES count as been able to walk and you don’t qualify!   .. it took 3 attempts over several years for me to get one which was then returned after a year due to electrical failure and after the hassle I had getting anything done I decided it wasn’t worth it,  I’ll find a way to fund my next one myself and get what I think will work best for me!

The passive trainer pedals which have made a big difference to my pain and mobility levels over this last year was a last resort and going ‘against medical advice’ after again been told by an ‘expert’ it wouldn’t work for me.

Passive Trainer pedals

 

Luckily for me I ignored their advice on the splints too,  but as you can’t get splints without a prescription (I was told.. you actually can!) I had my first ones shipped from the US with a Sensory Balance Belt.  I also bought my Piedro boots privately.  It was an expensive gamble in total with the boots been over £100 each, the splints,  balance belt and shipping from US were near £200.

 

The passive trainer pedals I took a gamble on after spotting a note on bottom of one site.  I had originally been led to the ones that cost thousands called Theracycles that were originally designed for people who were actually paralysed.  After coming across the Oxycycle (above)  by accident and looking for site with cheapest price I spotted a note on one site saying that these were NOT suitable for people who were paralysed.  I emailed them to check that they were motorised and why they were so cheap in comparison with other ‘passive trainers’  I was told you needed to have the ability to move your legs to be able to use the Oxycycle and it just assisted with the motor in making the movement more fluent.

 

As the Theracycles were at least £5,000 at the time for the cheapest pedal version I decided to take a gamble on the Oxycycle and luckily it paid off with persistence!  It’s a good job I’m stubborn cos the first few months attempts resulted in it sending my legs into spasms after just the 15 min pre-set time,  but I stuck with it reducing it right down to a single minute and building up… a year later my record has been 90 consecutive mins whilst watching a film,  usually I do 30 or 60 mins though in one go.

I still believe a standing chair would greatly help in my battle to remain independent but due to the cost and weight of the electric versions I have decided to look into the manual versions.

2 different models of manual standing chair

 

They have restrictions in that you can’t move whilst in the standing position so have to come back down again to move the chair, but even standing for 30 mins whilst playing tennis on the  Wii or something would be of help. I figured if you add E-fix wheels to make it electric with a joystick,  (see pic below) you’d only need to come down a little way so the supports were off the floor to move the chair in a semi stand,  this maybe helpful in a kitchen moving between worktops,  cooker and fridge etc as you can stop at any point between sitting down and fully standing up!

Some models require strength in arms and what look like the arm rests are the levers to use your own body weight to pull you up with a ‘gas lift’ assist (kind you find in office chairs to raise and lower),  others have a little battery and powered assist for the standing feature only, which will need to be charged I would think even though the chair is manual.   Even though these are classed as ‘manual chairs’ they still start at around the £5,000 mark.. and if you were adding the E-fix you’d be looking at around £9,000, unless you could make savings by managing to obtain both second-hand.   Still the big pro for this for me personally would be that as  its a manual chair I wouldn’t get stranded,  cos I can switch it back to manual if the battery went.

The E-fix turns any manual chair into a portable powered one

It wouldn’t get me in the park as the path is not smooth enough,  as my manual chairs have very small front castors but is ok for indoor venues such as shopping centres and you still retain a folding chair to fit in a smaller car boot.  Each wheel is a little heavier than a regular 24″  wheel but not any heavier than the chair frame when all the parts are seperate.  The joystick is removable and the battery under the chair seat so a folding seat can still be folded up.

Here’s video of how to take apart and fit in a car boot:

http://www.youtube.com/watch?v=40kNATWXpw4

 

I plan to keep an eye out for these second-hand to see if I get myself one in the next year or so,  but first need to organise a demo to see whether I could manage the version with gas lift or would need the battery assisted lift to stand.  I think if you disagree with what your health provider says will work,  you need to be prepared to do alot of research to work out why and what you feel would be a better alternative for you.

 

 

Just a Fun post: Advert for Canine Helper

This post is just for a bit of fun but I wondered if dogs could read, how many of them would apply to be my next Assistance Dog!! 😀

“oooh… here’s a good job!”

WANTED CANINE HELPER

Your challenge should you wish to accept is to work as my partner to help me remain independent.

Your responsibilities:

You will be working everyday, throughout the day but get time for  rest breaks, playtime and walks. Some events do not happen everyday,  some events will happen in the middle of another one.  eg.  You need to tell me when my textphone is ringing or someone knocking at door or ringing doorbell regardless of what other job you are doing or if you are playing at the time!

You MUST tell me if the smoke alarm goes off by giving the danger sign (dropping to floor not leading to sound)  in case it is ever a real fire.

Helping with dressing and undressing

Laundry duties:  including removing clothes from washer and dryer and carrying peg basket outside,  picking up any pegs dropped

Tidying your toys away

Helping Inca (my elderly dog) ie opening or closing back door for her if she wants to go out (if I have transferred to bed or sofa) and helping her tidy her toys away.

Public duties: You will be expected to come with me to help with shopping trips and must be on your best behaviour at all times when you are working in public.

You must watch me closely for signed commands to what I need you to do and stay by my side at all times in public places when you are working.

 

In exchange for this you will receive:

An home for life

All the cuddles you need any time of day or night

All Food & Medical expenses paid (and any ‘professional’ grooming costs if this applies)

Birthday and Xmas presents every year for life!

Trips out to parks,  nature reserves and holidays (where funds and transport allow)

At least 90 mins exercise (1 hour mornings,  30 mins afternoon/evening)  on non-shopping days and access to your own garden all day.

Paddling pool, agility course, and ball pit available for outdoor play. (A Flyball launcher is also planned for the near future)

Lots of doggy puzzles and treat dispensers for indoor play on rainy days!

 

So how many applicants do you think I would get?  😀

 

 

Product Review

Trabasack Media Mount

The new Media Mount by Trabasack

I first saw this product as a Prototype last year when it was nick named ‘Monti Media’

With all the equipment I have been collecting since my Ataxia started, I tend to prefer to look for things that are more compact if possible and can do more than one thing, to reduce the amount of stuff I have to take around with me.

The Media Mount is designed as a Trabasack accessory for the Connect (Velcro top) surface.  It can be used in a variety of ways.

I found it very good with the iPad so I could feed it through  the raised end and wrap it around to stop it falling off. (shown with original apple iPad case)

useful for supporting and angling an iPad or other communication device

The Prototype had a zip along the length of it so it wasn’t quite as flexible as the finished product now is.   It’s much more flexible without the zip and whilst I couldn’t wrap the ends around the end of the keyboard with the Prototype,  I can with the finished Monti and makes an excellent wrist support for typing with a keyboard.

in front of keyboard for wrist support

It is also useful for carrying anything that could slide off which you couldn’t velcro to the tray like a plate of sandwiches etc

useful for stopping plates sliding off your knee

You can bend it into different positions, its really flexible and can be used as a guide to keep persons hand in specific spot for example around a switch.

can be used for switch training to keep person’s hand within a target area

… or wrap it around a bottle to stop it falling off tray

As its soft and flexible it can be placed inside the Trabasack out of the way if necessary to hang on the back of a chair until needed.  Or it can be left velcroed to the top of it.

I think it’s an excellent product, multi-functional & well thought out. It adds further functionality to the original Trabasack Connect without adding extra weight to it

You can purchase the Trabasack Media Mount from their online store here for £19.99.

Brief Update

I didn’t realise it had been so long since I last did a post on here!

I’ve been working hard on the Forced Exercise theory with the passive trainer and had some good results.

Passive Trainer pedals

Before I first started on it I was having following difficulties:

• struggling to sit longer than an hour
• getting high levels of back pain
• struggling with control over arms due to increase in involuntary movement
• struggling with balance,  standing transfers and using crutches for a few steps

After a year doing an intensive exercise routine (voluntary.. ie wii fit  arms and legs moving at their own speed) and Forced (moving faster than I would be able to move them)  I have had the following improvements

• I can sit most of day in manual chair and now switching back to manual with powered drive wheels for better portability and to access buses/town etc.
• significantly reduced back pain and core muscles are stronger for sitting/standing with no support behind me
• a slight improvement in balance – enough to make using crutches for a few steps easier when transferring with human assistance into families houses from cars etc.
• reduced muscle spasms from the dystonia element in arms
• better gross motor control of arms (self propelling,  putting arms/legs into clothes, wii tennis etc)
• an improvement in fine motor control (fastening buttons,  zips,  not quite got laces but getting there)
• improved control for handwriting with both hands using Dexteria app for iPad (for improving Fine Motor Control).
• improved function in grip,  working up to holding pen,  stylus better for drawing with uDraw and pencils,  brushes again.
• using right hand to write with again!  (had bad writers cramp in it and had to re-learn to do signature with left hand)
• using rollator more around house than powerchair,  either walking with it (still do better with it as a reverse walker – behind me) or sitting on seat and pushing myself from room to room with feet.

My other big project that I have started recently is I’m applying for a Dual Skilled Dog trained jointly by Hearing Dogs for the Deaf and Canine Partners to alert me to household sounds,  public fire alarms and help me with daily living skills and jobs around the house.

It is a very long process I’ve got application forms in with info but now many people who are been contacted by Canine Partners for info won’t do the reports without appointment to see them or pay them (GP’S!) , so things are been held up waiting for appointments so this information can be sent off,  so I doubt I will hear anything before the end of this year about how long the waiting list maybe.

Hopefully he/she will arrive before my current dog (age 11) is unable to manage helping me or goes deaf herself and can’t alert me to smoke alarm,  doorbell etc, but I may need to do some back up research and find another solution if its’s going to be many years.

could this little guy be my next assistance dog?