Motor Neuron Disease (MND)- Status & Blog

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MND Patient 2

26 April 2018

MND Sensitivity

Living with an MND patient has highlighted that MND patients have a high sensitivity to touch & pain from the lightest accidental touch & unatural body posture -  in particular when their  legs get out of normal  position eg bent  back under during lifting & transfer. Also the patient is very pone to crying apparently a normal part of MND symptoms & crying can occur when someone shouts at them or they realise they can not do something they used to or their strength has reduced. The MND patient always feel cold even when it is hot & need a blanket inside the home & outside. Their appetite is reduced significantly due to the low  level of physical movement. The MND patient range of foods & drinks & portions reduces & food they used to eat they  do not want anymore thus limitng meal  options. The MND patient has a fear of falling down or off a seat when not secure in their mind this is surely a natural fear particularly if the leg muscles are weak.

 

Saturday 4 November 2017 at 12.20 hours

Death 2 years after final daignosis (looked after at home by husband until the Friday evening 3 Novemebr 2017 before hospitalisation so happy until hospital admission.

 

27 March 2017

Living With An MND Patient

MND reminder triggers - try to avoid anyone mentioning or referring to MND at all particularly the downside as this from my experience will remind the patient  of the unfairness of MND, the loss of mobility, being unable to do what they used to do, hopelessness of the medical science in that there is no cure nor treatment yet as this will lead to temporay depression & crying. MND positive thinking - getting the patient to excerise, do as much for themselves as possible ( disguised exercise), go out & socialise, visit places, family & friends, go out on daytrips & holidays, take up an interest, contribute to MND awareness  worldwide thus putting pressure on the medical science, research establishments & support organisations to get treament & a cure sooner rather than later.

 

31 December 2016

MND Friendly Carer

As a full time carer for someone who through no fault of there own has had a recent diagnosis of Genetic MND in April 2015 I have the opportuniy to see & deal with the effects of MND on a patient.

I give for information only what I have noticed starting from a GP diagnosed dropped foot & swelling of the right foot & ankles to an MND Clinic diagnosis of the cause being the most common faulty Gene over a year later.

There has been a slow progressive loss of use of the right foot with the foot swelling starting with the right foot which became  floppy & points outwards followed more recently the left foot & leg doing the same with the left foot pointing the same way as the right foot. There is still good  feeling in the feet & legs. The patient has been encouraged to walk each day & has managed to continue to do this.

The patient wears an elastic stocking in the day time to reduce the risk of blood clots & the patient has started again to take tablets for previous high blood pressure.

The right leg strength has improved again may be it  is compensating for the left leg until the left leg stabilises like the right leg.

When someone says something that reminds the patient of the MND crying can occur but the patient was prone to crying like this before the MND diagnosis.

The best thing is to keep a normal life going with socialising, gettng out of the home, holidays, meals & drinks, shows, cinema, but do check all venues & equipment for MND friendly functions & visit venues before visiting if possible.

MND patients as I suspect with all disable people because of what has happened to them can be very demanding & expect instant service all day & during the night which has led to me losing my patience but I feel the best action is to act normally & show the patient the effect they are having on you & others.

I have found the best way to cope is to create an agreed daily routine so everybody knows where they stand.

It is also important to make it clear what the carer is having to do in case the carer also needs help.

It is vital that it is made clear to the MND patient that you have other things to do & at the same time try & live your life as normal as possible.

Make it clear that they must let you know if it is a real emergency or not & not expect the carer to give immediate response to everything & they will have to wait otherwise the carer no sooner than sat down  will be up again & get very tired & that helps no one especially the MND patient..

As an MND patient  carer I have been getting the patient to use all parts of their body to do things eg use of hands to unravel something, raising the arms to reach for something, reaching down for something, connecting something, washing, preparing meals etc as a crafty way of testing the capability of the MND patient & this is working well & gives me advance warning of any likely problems & gives the patient independance & confidence.

The Council Occupational Therapy section & the MND clinic can help with free services & equipment.

 

 

16 November 2016

MND Friendly Support Equipment ?

We have found that very few items of support equipment from the NHS, OT or Manufacturers are ' MND Friendly ' as most suppliers do not consider use of their equpment by MND Patients. This has resulted in me having to design & make items & modifications to make the equpment ' MND Friendly ' throughout the MND progression.

 

 

16 Nov 2016

MND Friendly Public Facilities ?

From experience with an MND patient from the MND Diagnosis we find we have to do a lot of preparation, serious planning & communication to hospitals, GPs surgerys,, dentists, accomodations, pubs, restaurants, cinemas, halls, theatres, festivals, arenas, car parks, airports, airlines etc ...  before travelling tp determime if the facility is ' MND Friendly '. Very few facilities are as they only have to meet a basic legal specification which is in reality more for disabled people who can walk or use a hand propelled wheel chair & can manipulate themselves into position. The ideal disabled toilets we have found so far are at  Sainsburys in Heyford Hill, Oxford & Wetherspoons, Witney.

 

22 June 2016

MND Association - Local Social & Information Meeting

We attended the meeting at the Waterside Bar & Bistro (formerly Riverside Cafe) just off  the main road by  the River Thames at Benson. Excellent location & venue for social, business & boat  hire / trips. Recommend.