Motor Neuron Disease (MND)- Status & Blog


1. 4 wheel walker (rollator) NHS free hire - used for house downstairs & grounds




3. Wheelchair manual NHS free hire - used for long distances - RETURNED TOO HEAVY / POOR MANOUVRE OUTSIDE HOME.


4. External Folding Ramp 6 feet long & 27 inches wide with sides & handle (aluminium) £105  & Internal Ramp Plate with sides & handle

(Steel) £ 115 will accomodate all standard rollators, wheelchairs, electric wheelchairs, Mobilty Scooters & even 2 big Ambulance Men with an Ambulance Trolley with a patient on it. Plate drops onto door frame inside inside & Folding ramp drops onto door frame outside & over plate &  no fixings are required. Suppled by The Ramp Company with next day delvery. Lowest cost & can fit into car to take with you.


5. Adjustable step NHS free hire - where ramp can not be fitted but this needs handles to be fitted for the patient. RETURNED NOT MND FRIENDLY.


6. Raised toilet seat which with toilet seat raised drops on to existing toilet & is secured with 2 plasic clamps either side RETURNED CAN USE  CAMODE  INSTEAD - RAISE  HOUSE TOILET SEAT &  REMOVE CAMODE  BUCKET FROM CAMODE THEN CAREFULLY REVERSE CAMODE CENTRALLY OVER HOUSE TOILET & LOCK  CAMODE  IN POSITION


7. Toilet U frame placed around toilet & patient can assist themselves getting up off the toilet. RETURNED SEE 6. USE A COMMODE INSTEAD.


8. Bath seat sits across bath & is secured inside the bath with 4 plastic clamps NOT MND FRIENDLY -  RETURNED


9. Stair Lift - curved - Platinum Stair Lifts - Stairlifts suppliers despite  measuring the patient the chairs do not fit the patient /do not have enough adjustement to fit the patient / the nearest standard size chair is used / the MND condition is not  taken into  account by suppliers / suppliers will not offer modifications to suit MND progression - I  have come up with a simple way round this problems using Velcro  Strap variations to hold & control the patient on the chairlift seat subject to trials. NOT MND FRIENDLY - CUT AWAY SEAT SUPPLIED BY STAIRLIFT MANUFACTURER IMPROVES PATIENT  LEGS POSITION - ADAPTED SEAT SECURITY WITH VELCRO ELASTICATED STRAPS AT FEET + PLASTIC BOX FOOT REST COVER , VELCRO ADHESIVE SIDED STRAPS FOR  LEGS &VELCO STRAP FOR  UPPER BODY - WITH PROFESSIONAL HARNESS FITTING OVER SEAT BACK FOR UPPER BODY - REMOVED  STAIR HAND RAILS & REPLACED WITH PROFESSIONAL ROUND POLE FROM HOMEBASE TO GAIN MAXIMUM CLEARANCE FOR FEET & LEGS THIS WORKS PERFECTLY.


10 Step lift - Versatile Lift Company - step lift set below ground / floor surface operated by hydraulics it has a sliding plate on top of the step. Patient stands on the sliding plate the ramp raises the step to the floor or door frame height required the plate moves from the step lift to allow the patient to  step on to the floor level - very expensive around £19000 really aimed at commercial businesses - NOT  COST EFFECTIVE. I have a step design which can be made for a fraction of the price using standard parts & fittings / welding / bolting.


11. Lightweight wheel chairs - Excel  G- Lite Pro Faults  - 1. wheel nut rubbers pop out & get lost design & material wrong for app;ication. 2. patients feet  come off the foot rests needs velcro straps for feet  & legs - can use stretch traps for feet & one side adhesive coated straps from Homebase for legs &  use velcro straps 50 mm wide x 1.8 metres long straps  for upper body from Velcro UK. BE ADVISED AMBULANCE PATIENT TRANSPORT WILL NOT ACCEPT THIS WHEELCHAIR AS LIKE MANY OTHERS THE MANUFACTURER DOES NOT CRASH TEST  THEM - THEY APPEAR TO ACCEPT AN ELECTRIC WHEELCHAIR THAT THEY APPROVE - AMBLANCES WILL NOT PROVIDE A WHEELCHAIR DUE TO LEGAL REASONS - AMBULANCES EXPECT THE CARER TO PROVIDE LIFTING & MOVEMENT OF THE PATIENT USING BANANA SLIDE ON TO SEAT - PATIENT TRANPORT NOT EASY TO USE & CAUSES MND PATIENT DISTRESS - BETTER TO USE BUS OR OWN VEHICLE WITH AN AUTOCHAIRE HOIST OR A SPECIAL UTILITY VEHCICLE (SUV.)


12. Lifting equipment - Council OT suppled hoist free. Tried & tested - problems hoist too big & heavy  for most homes, patient sling overcomplicated to fit, need sling with access for using over a commode / toilet, hoist legs only adjust outwards, MND patients legs swing & hit the hoist base so care has to be taken & a cushion used, not to be used for  transporting.


13. Swimming support products (TBA) Referred to Complete Care Group for reply  (August 2016) No one seems to have the answer so back to simple tyre / floats


14. High toilet - looked at buying in conjunction with new bathroom suite -  Use of Camode described in 6.& 7. above& shower chair means a high toilet is now not required.


15. Commodes - Note - MND Patient can  be prepared to go to toilet ( clothes lowered & dignity cover - then by leaving the bowl  underneath the camode  during travelling to the toilet  in case  of an emergency on route be taken on the camode to the toilet - On arrival at the toilet  remove any fitted raised toilet seats - raise the normal toilet seat then remove the camode underneath bowl - then slowly back the commodeover the toilet seat to allow the toilet to be used from the camode above it - this reduces the number of  stand ups / sit downs / transfers  & reduces patients tiredness & stress. Commode used for toileting, washing, dressing, short distance transport.


16. Aircraft companies - in cabin transport (Ref British Airways July 2016) can not take 3 or 4 wheeled walkers in the aircraft on short flights on smaller aircraft but they do provide a specially designed chair for moving along the aisles in particular for getting to the toilet. Patients wheelchairs can  be used to the Booking In Desk & then put through to aircraft cargo hold & the airport assistance mobility support can be used instead. Alternatively the patients wheelchair can be used all the way to the departure gate & to the aircraft entrance  where it will be taken to the aircraft cargo hold. At airports the patients wheelchair may not be immeiately available & aircraft & airport staff will provide a wheelchair or transport buggy until it is available. 2 Items of mobility aids can be taken on the aircraft for free / no cost. Obtained airport wheelchair transfered patient to it then put walker & new lightweight wheel chair on  seperate aircraft cargo belt near suitcase check in. Continued to departure gate using airport  wheelchair. Boarding aircraft if you are lucky is by the normal tunnel then through the LHS front door  with other passengers  then patient is transferred to an aircraft special aisle width wheelchair for onboard movement..  If not lucky then a lorry with a hydraulic lifting cabin will drive to the aircraft where the cabin is lifted up to the RHS front door of the aircraft & manual transfer is made to the aircraft special aisle width wheelchair for onboard movement - if you are on a small plane the patient  will require carer physical assistance down steps or airport staff assistance if they agree - aircraft staff are not normally allowed to assist due to insurance & airline rules but most will offer limited help. 


17. Beesy Board - for moving patient from wheelchair into car seat & other transfers - avoids patients & carers lifting up & down of patient. NOT  MND FRIENDLY CAN BE USED IF PATIENT ACCEPTS BUT NEED CARER ASSISTANCE.


18. Lightweight Wheel  Chair - Supplier (Ability Matters, Model  Excel Transit chair Make GI Pro Size 20 inches wide Cost £ -  replaced NHS Wheelchair which is too heavy to lift, too big for disabled toilets, difficult to steer, difficult to push over uneven surfaces, difficult to get near a car, brakes difficult to get to. Note -  if you contact the NHS Wheelchair Service they can liase with your new wheel chair supplier & the NHS & give you vochers towards the cost & you pay the small balance between the cost & vouchers. Problems - rubber  covers on rear  wheel nuts pop out & get lost - Supplier Ability Matters  unable to get correct replacement runbers twice  supplied plastic ones with spikes on that did not fit but stated they were correct & would fit they would not - then same thing happened when orderpng direct from Excel their second attempt got correct rubber ones but despite asking for a part numberfor future loss none was supplied.


19. Reclining, Feet Raising & Lifting Up  Electric Controlled Seat - Supplier Ability Matters -  Model  Make Size Cost - to assist in getting up on feet, raising feet asbove body to  reduce feet & ankles swelling, increase comfort for walking, for relaxing / sleeping. Problem - farting  noise from front of chair RHS particularly when  raising &  lowering foot rest- Ability Matters expected us to return the very heavy chair to them for examination - my investigation reveled  that all moving joints were dry  so WD 40 applied twice to all moving joints has stopped the noise but grease may be needed - also the linkage drive mechanism appears to be biased off centre to the RHS  & postion correction may be  also be needed.


20. Raising / reclining bed with verical lift (rotational lift is also available) - Laybrook -  Supplier Problems - incorrect order / incorrect mattress for an MND patient - Customers need to request a reinforced sides support mattress that does not compress when sat on to prevent the patient slipping off the bed as is the case with MND Patients - Despite explaining to Laybrook about MND as a medical condition & Laybrook giving the assurance that Laybrook understood about MND & the need to cater for its progression & had experienced beds for MND patients - the mattress was incorrect mattress for the MND condition - Laybrook are prepared to help as a gesture of goodwill - but the customer has to fund the upgrade to  the correct mattress by a refund from the incorrect order plus the Laybrook waiver of part of the cost of the upgraded mattress. Bed is supplied  as  2 single bed forming a double bed but the beds are easily seperated by undoing headboard 8 screws & 2 U shaped brackets holding the beds together at the bottom joined sides accessed by raising the medical bed vertically. With beds seperated remove normal bed headboard screws this enables the bed to be pushed away from thethe medical bed for access down the other side of the bed to support & manouvre the patient.


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