Doggy Daydreams...

It was a struggle getting up at 7.30 this morning as it was 4.00am before I managed to get into a proper sleep.  I was awake again at 5.50am, thankfully only for 10 minutes but my head felt as though it was full of cotton wool when the alarm went off.  Thankfully once showered I felt a little more alert.

We were all up early as Alan had a review of both his power and manual wheelchairs.  The power chair seat is miles too small (the edge of the seat stops just beyond his buttocks so no support for his thighs and he keeps slipping off it and the lap belt keeps coming loose) the manual chair has the same problem with the seat plus it is so lightweight that if Alan moves about in it, he can actually tip it over!  

David and Shelley were attending the appointment with him.  I had to wait at home to await the uplift of some equipment Alan had borrowed which was due to be collected sometime before 2pm.

It was probably just as well I wasn't there as the outcomes are not quite as we had hoped and I am not sure I could have remained my usual calm self.

The good news is a new seat will be ordered that will hopefully fit Alan.  In order to keep him in a good seated position, the physio/bio engineer suggests that the wheelchair seat is tilted back.  This is fine and we do tilt it back when he's at rest and feeling tired and watching tv, listening to music etc, but if the seat is tilted back when the wheelchair is moving, it affects the power mechanism and the chair randomly comes to an abrupt halt!  Not good when Alan is half way across a busy road!  

She was really stressing how important it is to have the seat tilted when the chair is in a sitting position to help Alan's posture and make sure he is in a good position to prevent muscle contractures and curvature of his spine.  And there's the rub.  His current manual chair doesn't have a tilt feature, so David asked if the new manual chair would be reinforced in some way as if the seat was tilted on it, it would be even easier for him to topple it.  Yes was the answer, the new manual chair will be reinforced in some way to stop it toppling but it won't have a seat we can tilt as they don't supply manual chairs that tilt.  

Eh?  Run that past me again....you've just stressed how it is imperative that in order to meet his needs, any wheelchair Alan sits in has to have a seat that tilts.  This is your actual clinical assessment of his medical needs, but you can't / won't provide the equipment required, I assume because of cost.  As a result he has to sit in a chair that will cause him pain and discomfort and worse case scenario, lead to him needing additional physiotherapy, occupational therapy and maybe even surgery in order to correct the problems caused by a chair provided by the NHS, that the NHS professionals already know doesn't meet his need.  How is that saving money in the long run?

They also commented that Alan is strong (he is but at 47.8kg he's not exactly Mr Universe) and his involuntary movements when he gets excited  or annoyed cause him to slip out of his optimum seating position, so it was suggested we might want to consider chatting to our GP and have him prescribe a drug, which is muscle relaxant, for Alan that would calm his involuntary movements down.  This will be the drug that's not recommended for Alan's type of CP as he doesn't have the muscle tightness it's designed to relax.  It also has a myriad of common side effects including drowsiness, headache, confusion, seizures, vomiting, low blood pressure, constipation, insomnia...I could go on.  

I get that they were trying to come up with solutions to a life long problem of Alan's (getting him in a good seating position and keeping him there)  but drugging him so he sits slightly better in a chair that doesn't meet his needs doesn't strike me as the best way forward.  

Having just read all that back, I think I am being a little harsh on the service.  The manual chair is a back up chair and Alan's main chair, his power chair, does tilt and I know the people involved are doing their best within the constraints of the service.  They are good people doing a difficult job and in general I have absolutely no complaint with the service.  Maybe my lack of sleep last night has made me extra grumpy today! 


Anyway, Lola and I stayed at home waiting the arrival of the carrier to uplift the items and of course they didn't arrive till after Alan was home, so I could have gone to the appointment.  

Lola had a fabulous walk with R and came back full of they joys.  After a sleep and her lunch she was in a playful mood and we spent a lovely hour together playing with her toys and cuddling on the sofa.  After a final game of tug of war, she got on her stool and settled down again for a wee snooze and I snapped her just before her eyes began to close.

I have now paused to upload my blip and eat dinner after which I shall resume working my way through my to do list (not as many ticks on it as I would have liked today but there are some.)  Alternatively since it's Friday night, I might just get my Tesco online order completed, have a wee G&T and come and spend some proper time on Blip instead ;-)))