Rehabilitation is not just for Christmas ...........

It has been a LONG time since I posted anything on the Blog, so I'll try to update you all ..........
Douglas is now into year three of his post stroke rehabilitation and, despite how slowly improvements happen, improvements there have been!

A very significant improvement has been brought about by the incredible generosity of a multitude of friends who raised money (at the instigation of Annette and Steve Irvine of Alien Rock fame!!) to buy a 'proper' recumbent trike for him!!!!!!!!!! (pikkies on Facebook)
This quite amazing effort has had a quite amazing outcome! Douglas is now able, with a support rider, to get out and about on his own recumbent trike (an ICE 3 Sprint made by Inspired Cycle Engineering) This gives him so much pleasure ........ it's hard to describe. At long last he has the ability to be in control of his own environment! If he crashes (and he has done so on a couple of occasions, quite spectcularily) he has only himself to blame!
The important thing is that HE is in control ... he is NOT reliant on others (at least in the riding phase) to do things for him. Bike riding was such a great part of his pre-stroke life and this (to a degree) has been returned to him.
We (Douglas, Sheena and I) can never express adequate gratitude to all his friends for their generosity.

There have been a couple of backward steps in the rehab process mainly related to his left eye sight problems.
I do so wish that the medical team involved in his Intensive Care had appreciated the significance of the left side paralysis in relation to his eye condition. The inability to close the left eye in the early stages of the stroke led to ulceration of the cornea with the resulting adverse effect on his eye sight that remains a problem. Had this been truly recognised in the early stages of the stroke, perhaps all the subsequent eye operations and poor prognosis may have been avoided. (Eye lid closure for example)
Douglas has now had three operation in an attempt to correct his inability to fully close his left eye with only partial success. He still suffers from 'dry eye' where the effectiveness of the tear duct is hampered by the laxity of the facial muscles around the left eye. This has resulted in the need for 4 times per day application of eye lubrication to prevent ulceration of the cornea. The long term prognosis is however not good.
Thanks to the diligence of the eye surgeons a further procedure has been identified as being appropriate and, come the 11th May, we'll find whether or or not this is the best course of action.

Balance remains a problem unfortunately. Doug describes it as being drunk and standing with all your weight on your heels! Not the best of feelings .... This coupled with the slowness of response to muscle movements means that any corrective action is usually too late and exagerated (like a spasm). Walking unaided is impossible and, even with the support from a zimmer frame, is difficult and slow - a great source of distress and anger to Doug.

Throughout all this the most significant positive element has been the support of his pre-stroke friends.
It is impossible to properly thank all those who, by personal visits, by social invitations to evenings out or by email contacts, have maintained the close relationships that mean so much to Douglas. Such contacts maintain the link between what was and what is now possible and re-enforce the belief that past ambitions are perhaps not impossible.
Headways in Edinburgh have also made a very considerable contribution to this through their Befriending Scheme that matched Douglas up with a young chap (a volunteer) with very similar interests; a better match could not have been hoped for - ThomasH and Doug very quickly became close friends and meet socially on a regular basis outside the home environment.
My wife and I can never truly appreciate the importance of such issues to Douglas but we can see the beneficial effects on his well being on a daily basis.

Douglas has, contrary to earlier fears, developed a great interest in his physical well being and spends many hours devoted to physiotherapy both at home, at Headways (a Charity devoted to acquired brain injury patients) and in the local Gym (Drumbrae Leisure Centre - courtesy of Edinburgh City Council). This is so important in maintaining his physical strength especially given the neurological stroke damage he has suffered. I am not sure what he would do without such support and encouragement. The benefits on his mental well being are of course equally important.
It is however sad that such support services appear to be in such short supply in the NHS. Since so much effort is devoted to sustaining life, it is a shame that the quality of life saved is given so little attention once the crisis has passed.

Throughout all this a key area of concern remains ........ neither my wife nor I are getting any younger and what happens to Douglas when neither she nor I are able to support him is a continual worry to us. At 39 years of age he has many more years of life left than either my wife or I have. The way in which the state care provision is moving gives us no great hope for the future.
It is unfortunate that politicians seem unable to comprehend a time scale greater that the next election!! If they could they might appreciate what us commoners are faced with!
This raises an important question however, especially for parents of a disabled person. What happens to this person when we have gone?????
Aaaah now there is a question that we'd rather not contemplate.
None the less it a serious concern and one which is not honestly addressed by any of the many support agencies. This is especially true of the state agencies where help and assistance is so diversified - Disability Living Allowance (nothing to do with the ability to work) - Unemployment Benefit (or whatever is is now called) without which National Insurance credits (payments?) seem to be impossible ................................ etc etc.

Fortunately Douglas seems to have retained his sense of humour and his resilience for which I and Sheena are forever grateful.
I just hope that we can follow suit!!

Iain