Sunderland-mayor-and-mayoress-take-on-motor-neurone-disease-
just-because-i-have-a-terminal-illness-it-doesn-t-mean-my-life-is-over
Joost van der westhuizen
Wheelchair-warrior-to-race-round-the-waterfront
Friday 23 August 2013
Where to now
the goal is to just keep going!, keep him active and independent as long as possible.
I'll post updates if there are any changes and I'll happy answer any questions, I only ask that you ask them here and not on facebook, I will post links about updates on facebook, dad, mum and Rory are all on face book but its just for the games! (lots and lots of games posts lol)
but please don't be afraid to ask questions
I'll post updates if there are any changes and I'll happy answer any questions, I only ask that you ask them here and not on facebook, I will post links about updates on facebook, dad, mum and Rory are all on face book but its just for the games! (lots and lots of games posts lol)
but please don't be afraid to ask questions
How is he right now?
Right now he ok its just a limp, cough and speech issues and we hope it stays like that for a while, everything is ok to manage with at the moment mum is still working, so she is home with him at night and I work nights so I'm home during the day if he needs anything,
He can still drive as his car is an automatic and its his left leg that is affect, he just got is permit for mobility parking so he can use the wheelchair car parks so he can open the car door enough to get in and out and he still takes Rory for walks most days.
He doesn't sleep much but he sleeps its on the sofa which he finds is really firm and he can sleep in a slight sitting position to help with the coughing.
He can still drive as his car is an automatic and its his left leg that is affect, he just got is permit for mobility parking so he can use the wheelchair car parks so he can open the car door enough to get in and out and he still takes Rory for walks most days.
He doesn't sleep much but he sleeps its on the sofa which he finds is really firm and he can sleep in a slight sitting position to help with the coughing.
What can we doing to keep Dad going?
He is in contact with...
-physiotherapist who helps with exercises for the muscles to try and keep them going as long as possible
-speech therapist who helps with ways to communicate and eat
- occupational therapist who looks after if we need stuff to make the house and his day to day living easier for him
-A Geriatrician who oversee all his care
-the MND field worker who looks after his rights and needs and provides a someone to just talk to
they are all very nice lovely easy to talk to people who come and visit you in your own home
he is also starting to go the MND support meeting, where he is meeting other people with this illness who he can talk to about things like stuff they found that helped with deal with problems brought on my this illness
-physiotherapist who helps with exercises for the muscles to try and keep them going as long as possible
-speech therapist who helps with ways to communicate and eat
- occupational therapist who looks after if we need stuff to make the house and his day to day living easier for him
-A Geriatrician who oversee all his care
-the MND field worker who looks after his rights and needs and provides a someone to just talk to
they are all very nice lovely easy to talk to people who come and visit you in your own home
he is also starting to go the MND support meeting, where he is meeting other people with this illness who he can talk to about things like stuff they found that helped with deal with problems brought on my this illness
Is there a cure
How did he get it?
Currently there is now know official cause of MND. expect for genes which may cause the familial ALS (FALS),the very very very rare passed through family type
Dad is going to try and take part in a research programme at Massey university about the occupational and environmental facts that may cause or help trigger this illness, All we know is that Dad was made redundant from his job and it got quite stressful as he couldn't find another job that's when the symptoms started showing, but it could also be that they were always there but because he was busy we didn't notice them
It can be passed through family but is very very very rare so please don't panic that your brother, father, or son with develop this illness because dad had it, it can just happen to anyone
Dad is going to try and take part in a research programme at Massey university about the occupational and environmental facts that may cause or help trigger this illness, All we know is that Dad was made redundant from his job and it got quite stressful as he couldn't find another job that's when the symptoms started showing, but it could also be that they were always there but because he was busy we didn't notice them
It can be passed through family but is very very very rare so please don't panic that your brother, father, or son with develop this illness because dad had it, it can just happen to anyone
How is it affect Dad?
Dad's MND presented late last year with a limp in his left leg, which has gotten more pronounced over time and also gets worse as he gets more tired. So at times he needs to use a cane to walk with, at other times he has to lift his leg to move it if he is getting in and out of cars or when sitting in a chair.
The muscle wastage caused by the MND has caused his foot to drop as the muscles are unable to hold it flat, this causes him to stub his toes, stumble, trip and fall over, yesterday he was fitted with an AFO (ankle foot orthosis). which keeps his foot up and stops him tripping
He also has muscle issues with his tongue and mouth area which affect his speech and ability to swallow and talk. The swallowing issues can make him choke when he is trying to eat and drink, so he has to take his time and have meals which are wetter and easy to swallow, this also causes him to cough heaps as if he has a bad cold and is trying to cough up mucus.
The speech problems are more noticeable again when he is tired, yo have to be in the same room as him, and sometimes he has to repeat him self for you to understand him, this is compounded with the fact he has two hearing aids due to hearing loss from jobs so himself has difficulty hearing you
The muscle wastage caused by the MND has caused his foot to drop as the muscles are unable to hold it flat, this causes him to stub his toes, stumble, trip and fall over, yesterday he was fitted with an AFO (ankle foot orthosis). which keeps his foot up and stops him trippingHe also has muscle issues with his tongue and mouth area which affect his speech and ability to swallow and talk. The swallowing issues can make him choke when he is trying to eat and drink, so he has to take his time and have meals which are wetter and easy to swallow, this also causes him to cough heaps as if he has a bad cold and is trying to cough up mucus.
The speech problems are more noticeable again when he is tired, yo have to be in the same room as him, and sometimes he has to repeat him self for you to understand him, this is compounded with the fact he has two hearing aids due to hearing loss from jobs so himself has difficulty hearing you
What is Motor neurone disease (MND)?
Motor neurone disease (MND) as it is know in the UK, New Zealand and Europe or ALS, in the states is the name given to a group of
diseases in which the nerve cells - neurones - controlling the muscles that
enable us to move, speak, breathe and swallow undergo degeneration( the protein they need malfunctions) and then they die.
With no nerves to activate them, muscles gradually weaken and waste away,
causing increasing loss of mobility in the limbs, and difficulties with speech,
swallowing and breathing. The patterns of weakness vary from person to person.”
Think of it like the brain and your muscles a cell phones
and they are trying to text each other and the neurons are like cell sites, the
cell site stops sending out a signal which then causes one of the phone to stop
work and so the text you send doesn’t get to the other phone
It can be passed through families but that is very very very
rare! And is also less common in women and those under 50.
It has a life expectancy from time of diagnosis or 2 to 5 years but people can live up to 20+ years, it all depends on where the illness showed up first and how long it takes to progress
It has a life expectancy from time of diagnosis or 2 to 5 years but people can live up to 20+ years, it all depends on where the illness showed up first and how long it takes to progress
Saturday 10 August 2013
The Official Family and Friends Announcement
In June of 2013, Les was diagnosed with Motor neurone disease (MND) after a few tests at Wellington hospital, It is a terminal illness affecting the nerve cells, He is being looked after by a lovely group of doctors and field workers from the Hospital and the MND association of New Zealand.
In the following posts I’ll try to answer some of the basic questions you might have and then We’ll try to post updates about how he is coping
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