A Severe ME Guide to Part 3 of the DLA Form
Greg Crowhurst 18 January 2009
This is designed to help you, as someone with ME, to think through some of the problems that might be an issue for you in living your daily life; it can be very difficult trying to tease them out, given how complex and devastating the illness can be.
Do not be afraid to provide as much information as possible for the Assessors; it is the only way they will be able to make an accurate assessment of your needs.
For more help , Benefit and Work’s superb step-by-step guide to completing the whole DLA Form , is an excellent investment .
Part 3 Getting Around Outdoors
Q .27 Do you have physical problems that restrict your walking ?
From a severe ME perspective :
Do you have paralysis following sleep ? Do you need physical help in order to move ? Do you need help getting into and pushing a wheelchair ?
Do you experience body pain ? Muscle fatigue ? Muscle dysfunction ? Inability to stand without support ?
Are you bed-bound for large portions of the day ? Do you have restricted mobility ? Do you experience pain and
discomfort ?
Q. 32Do you fall or stumble outdoors ?
Do you experience body spasms, paralysis, numbness, shaking ?
Do you fall without warning ? Do your muscles just stop working all of a sudden ?
Are your muscles able to hold you up ?
Do you black- out upon standing ?
Can you bear physical contact ? Do you suffer from pins and needles, flowing and moving sensations ? Do your hands, feet and legs go dead ?
What degree of physical pain are you in ?
Do you have poor spacial awareness ? Do you bump into things ?
What happens when you fall ?
If you fall do you have the energy to deal with it ? Do you need help from another person ? What impact does falling have upon your symptoms, does it make them worse ?
Section 4 Q 39 : Help to get into bed :
Do you need someone to warm the bed for you, because of temperature regulation issues ? Does someone have to pull back the covers for you ? Do you require assistance with a drink ?
Help to get out of bed :
Are you paralysed after sleep ? Are you in pain ? Can you move your limbs ? Can you open your eyes or speak ? Do you require gentle help to move your limbs; can you bear their touch though ?
Are you in danger of falling ? Do you need to be helped into a wheelchair ? Can you cope with the movement ?
Do you have to return to bed throughout the day and need regular assistance ? Do you need help to get out of bed and go to the toilet ?
Toilet needs :
Do you suffer from IBS type symptoms ? Do you have increased micturation or diarrhoea , which means you have to use the toilet more frequently ?
Do you need help with getting to the toilet, help with clothing ?
Have you had any special adaptations made to your toilet ?
Washing, bathing :
Are you able to stand or do you require help ? Can you judge temperature accurately or are you too numb, or do you suffer from pins and needles ? Do you experience exhaustion and muscle dysfunction ?
Do you require assistance in and out of the bath ?
Are your hands strong enough to use grab rails, if they have been provided ?
Do you need to use a wheelchair to get to the bathroom ?
Q42 . Dressing and undressing :
Does someone have to wash and iron your clothes ? Do you need help to pull things over your head ? Do you have to wear special, comfortable clothing ? Does dressing take a long time because of pain, exhaustion ?
Can you put your shoes on, tie laces ? Can you cope with buttons – are you able to use your fingers or are they too numb, painful, paralysed ?
Q 43 Moving about indoors :
Do you have to sleep downstairs ?
Are you severely disabled with exhaustion, muscle fatigue, parathesia, numbness, transient paralysis, pain and other symptoms ?
Do you have breathing difficulties ? Are you in danger of falling ? Do you get breathless ? Do you experience secondary hyperventilation as a result of muscle dysfunction ?
Do you experience muscle weakness, muscle spasms, do you require assistance with walking ?
Do you suffer from dizziness, pain, disorientation, malaise ?
Q 44 Do you fall or stumble indoors ?
Do you suffer from pain, poor spacial awareness , balance and coordination difficulties, weak painful muscles, muscle fatigue, exhaustion, dizziness, orthostatic intolerance, transient paralysis and numbness, affecting both awareness and cognitive function, , eye pain or facial paralysis ?
Q 45 Difficulties with food and drink :
Do you need to be fed ? Are you able to remove caps, add seasoning ? Can you sit up ?
Do you need your food preparing and chopping. Do you have to use special cutlery ? Do you have the strength to cut your food , lift a knife and fork ? Do you suffer from muscle dysfunction and an extreme lack of energy.
Do your hands work ? Do you experience paralysis, numbness, parathesia , pain ? Do you require assistance to drink throughout the day ? Can you hold a cup or glass Do you need someone to fetch and hold your drink ?
Does your food have to be cut up for you ? Do you have difficulties with chewing, swallowing ? Do you become exhausted and experience Post exertional fatigue and malaise ? Do you become ill and exhausted following meals ?
Do you have difficulties sitting upright ?
Do you need reminding to eat meals regularly ? Do you need to eat frequently to avoid hypoglycaemia ?
Q 46 Medication during the day :
Do you suffer from cognitive difficulties and mental tiredness ? Do you need frequent help to remember to take your medication ?
Do you need help to open pots, take out pills, help with a drink, then to swallow ? Do you need help to sit upright in order to take your medication ?
Do you need help to cut pills ? Do you need someone to fetch your medication from the pharmacy ?
Are you sensitive to drugs Do you need help coping with the side effects of medication ?
Does your GP have to visit you at home ? Do cognitive difficulties,(receiving and processing of information), paralysis make it difficult for you to speak ? Does someone have to speak on your behalf ?
Do you have any regular tests which need carrying out at home ? Do you need someone to open the door and let the nurse or doctor in ? Do you need someone to comfort and support you ? Do you experience post-exertional malaise ?
Q 47 Communication :
Do you have difficulty with receiving and processing
information ? Do you have concentration and memory difficulties and difficulties in thinking ? Do you experience mental fatigue and brain fog ?
Do you suffer from hyperacusis ? Can you listen and speak to people on the phone ? Can you listen to or converse with people on a 1:1 basis ?
Are you able to physically hold the phone ? Do you have the breath to speak or do you become breathless when you
speak ? Do you have the energy to engage in ongoing conversation with others ?
Are you light sensitive ? Do you need low lighting and a darkened room ? Can you read ? Can you understand and make sense of questions, forms, letters ? Do you need help to read your post, deal with bills, application forms ?
Do you need someone to answer the telephone, answer the door, make telephone calls for you, speak on your behalf ?
Do your symptoms increase during and following any
exertion ?
Are you able to hold a pen Do you suffer from pain, paralysis, numbness, poor motor control and coordination, muscle fatigue and lack of energy and ability, because of your severe ME ?
Q 48 Help with hobbies, interests and social activities : at home, continued :
Do you need someone to fetch and carry anything you need, write letters for you ?
Do you need someone to read the post for you, read articles to you, type emails for you, manage the complexity of a computer for you ?
Do you need someone to mow the lawn and do the garden for
you ?
Are you too physically exhausted, weak and unable to manage by yourself ?
Can you sustain normal function or interaction ?
When you go out :
Do you need someone to help you get your outdoor clothing and shoes, help you in and out of your wheelchair ?
Do you need help to cope with your symptoms ?
Do you need someone to drive you, to push your wheelchair, help you cope with the environment, get you to a toilet, make sure that you have food and that you are safe ?
Do you lead a very restricted and isolated life at home ? Are you unable to go to most places because of your symptoms ? Can you have a normal social or leisure life ?
Do you need someone to attend meetings on your behalf and represent you ?
Do you need someone to go and get cash out from a bank for you ?
Q 49 Supervision from another person :
Do you need someone around at all times because you are in danger of falling or hurting yourself ?
For large parts of the day are you completely immobile ? Are you in constant and severe pain ? Do you need someone to help you with all aspects of your life ? Do you need someone always available to help you within calling distance ?
Q50 Preparing & Cooking a Meal :
Do you have cognitive difficulties with receiving and processing information ? Does this makes thinking and planning difficult ?
Do you have brain fog ? Do you have difficulty thinking, remembering , receiving and processing information ? Do you forget the names of objects and words ?
Do you have difficulty standing and sitting? Can you tell temperature safely ? Are you at risk of burning yourself, near a hot plate, oven or grill or hot water ?
Are you noise sensitive ? Do you get irritated by the sound of running water, the sound of rattling cutlery, the banging of pots, pans and plates ?
Do you experience chemical sensitivities ? Do certain foods and ingredients can make you nauseous , give you a headache or make you ill ?
Do you have difficulties carrying , holding and lifting pans, pots cutlery, kettle ?
Do you have poor spacial awareness, orthostatic intolerance? Do you get dizzy , black out , fall over ?
Are you able to read ingredients and tell weights ? Do you have the strength or energy to chop ? Does any activity make you more ill, with increased pain, for hours or days afterwards ?
Q 51 Help with care needs during the night :
Do you need help to move limbs and body ?
Do you bad nightmares, linked to the severity of your
Symptoms ? Do you need rea ssurance and emotional support ?
Do you find it difficult to go to the sleep ? Is your experience of sleep unrefreshing ?
Do you need help to cope with your symptoms ?
Do you need help to get a drink ?
Do you need help moving the duvets on and off ? Do you experience night time shivering and sweats, because of poor temperature regulation ?
Do have difficulty getting physically comfortable because of your symptoms ?
Q 52 Help with toilet needs during the night- continued.
Following any period of sleep, do you become unable to move without physical assistance ?
Do you need help to move your body, to sit up, to get to the toilet, to open and shut the door and sit on the toilet ?
Would it be inappropriate for you to use a commode ? Would it be physically comfortable or unsafe for you ?
Do you have increased micturition because of your severe ME ?
The longer and deeper you sleep , do your symptoms get worse ?
Q 53 Help with medication at night :
Are you unable to move following sleep ? Do you need help to take the medicine ?
Do you experience painful hands, muscle dysfunction, numbness and paralysis ? .
Do you need physical contact and comfort for your symptoms ?
Q54 Do you need someone to watch over you – further information:
Would being left alone at night be dangerous for you ? Can you get out of bed, or out of the house, without physical help from another person ?
Do you need physical and emotional support to cope ? Do you experience insomnia ? Do you have difficulties getting to sleep ?
Do you need someone around at all times because you have exhaustion, muscle fatigue, transient paralysis, cognitive dysfunction, dizziness and post exertional malaise ?
Are you in constant danger of hurting yourself and not getting your needs met and a subsequent worsening of symptoms, without someone available at all times ?
Do you need someone to be with you, to help you to get to the toilet during the night ?
Q55 Anything else you want to tell us :
There is so much you can add here !!! Especially a list of your symptoms.
Are you severely ill and disabled ?
Do you ever feel well ?
Without ongoing assistance, day and night, would you get your basic needs met ?
Can you predict or determine how you will be in any one
moment ?
WHAT ARE YOUR SYMPTOMS ?
Weakness, transient paralysis and sleep paralsysis ?
Noise sensitivity (hyperacusis) and light sensitivity
(photophobia) ?
Widespread disturbance of the central nervous system : parathesia, crawling, itching, burning sensations, pins and needles and numbness ?
Cognitive disturbance including difficulties with receiving and processing information, difficulties with short-tern memory, concentration and spacial discrimination ?
Head pain and migraine type headaches ?
Following sleep do you become totally paralysed and unable to move or even speak, without assistance ?
Do you experience hyperesthesia , is your body hypersensitive and painful ?
Is the process of helping you long and slow ?
Does anything you do have a potential after-affect that can put you in bed for hours or days or weeks at a time ?
Are you always in pain ? can you ever get comfortable ?
Do your muscles give way without notice ?
Do you need care day and night and assistance with all areas of your life; physical, emotional and spiritual ?
Does contact from other people have a post- exertional impact resulting in worsening symptoms and increased pain and
fatigue ?
HAVE YOU HAD ANY RECENT TESTS CARRIED OUT ?
Do you have difficulties with concentrating , receiving information, understanding questions, thinking and processing information ?
Do you experience neurological symptoms such as paralysis (both transient awake and sleep-induced), spasms (ranging from head and arm shaking to full body spasms), facial palsy/swallowing difficulties , numbness ?
Do you experience muscle dysfunction,leading to recurrent immobility and falls, an inability to hold things ?
Orthostatic intolerance, do you black out on standing up and go dizzy ?
Parasthesia and hyperesthesia,resulting in physical contact
being unbearable, along with flowing and moving sensations all over your body like very fine tingling/pins and needles. Do your hands, arms, legs and feet go completely dead and numb ?
Pain , do you have severe and often acute levels of pain ?
Are you ever out of pain ? Is it burning, itching, throbbing pain ?Does activity bring increased pain ?
Flu-like symptoms and malaise, meaning you never feel well ? Does this worsen with any activity, mental or physical ?
Severe head-pain and headaches.
IBS type symptoms, nausea, food sensitivities, causing you difficulties with diet and eating ? Do you need a special diet ?
Hypoglycaemia . Do you need constant help to eat enough food regularly to try and avoid this ?
Sleep dysfunction, do you have difficulties in getting to
sleep, difficulty going to sleep until the early hours of the morning,
becoming paralysed with intensified pain, resulting in inability to speak or open mouth or eyes or move any part of you ?
Do you lose sense of parts of your body such as your head and mouth , hands and arms and feet ( proprioception) ? Are you unable to speak ?
is your sleep pattern shifted ?
Increased micturition. Also dry mouth and increased thirst,do you have to drink more often which has an impact especially at night ?
Eye pain, visual disturbances, difficulties with movement and
motion ? Do your eye muscles hold their focus ?Do you experience pain when attempting to read and
double-letter vision ? Do your eyes itch and burn ?
Cognitive dysfunction, leading to immense difficulties in receiving and processing information, which causes huge problems in communicating both face to face with people and other forms such as reading and writing and telephone ?
This is a major documented symptom of ME.
Photophobia, does light hurt you ? Do you have to have the curtains pulled, low lighting at best ?
Acute noise sensitivity. Does this lead to problems with interacting with people ?
Heat and cold intolerance–do heat and cold both make you feel more ill ? Temperature regulation –do you often feel too cold or get too hot sometimes.