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Ataxia Questionaire
Complex Care Counselling
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Ataxia Questionaire
Ataxia Questionnaire
Who is completing this form?
Please tell us who is completing the form?
Myself
Partner
Carer
Mother/Father
Family memeber
Social services
Other
Other
If one or more people are completing this form multi-select from the answers above.
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Contact details of person completing this form
Name
Phone
Email
Reason person who wants counselling cannot complete it.
Inability to use computer/phone/laptop
Person is to distressed to complete it
Person has cognitive issues
Person physically cannot complete it
Other
Other
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Your Contact Details (person who wants counselling)
Your Name?
*
PostCode?
*
Date of Birth
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GP Details
Surgery Name
Postcode
Dr Name (if Known)
GP Email (if known)
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Home?
Relationship status?
Single
Divorced
Live-In-Partner
Married
Children living at home?
Yes
No
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Employment?
Employed?
Yes
No
Status
Full-Time
Part-Time
Are You Medically or Physically Able to Work?
Yes
No
Other
Other
Are You Retired?
Yes
No
Are you a student?
Yes
No
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Aspirations?
Multi-select
Facilitating behaviour change
Enhancing coping skills
facilitating your potential
Development of self-worth
Improving relationships
Reduce anger
Reduce negative feeling and thoughts
Explore broad set of issues
Reduce or remove addictions
Establish and maintain relationships
Remove or reduce negative cycles
Other
Other
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What Would You Like Help With?
Multi-Select Available
Addictions
Anger
Anxiety
Body Dysmorphia
Chronic Fatigue Syndrome
Chronic Pain
Depression
Dissociative Disorders
Health Anxiety
Fibromyalgia
OCD
Continued
Psychosis
Panic Disorder
Personality Disorder
Phobias
PTSD
Social Anxiety
Stress
Suicidal Thought
Self-Harm Thoughts
Other
Other
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Ataxia Type?
Your Ataxia Type?
Episodic
Friedreich’s
Spinocerebellar
Telangiectasia
Other
Other
Friedreich’s ataxia
Friedreich’s ataxia is the most common type of hereditary ataxia (caused by genes you’ve inherited). It’s thought to affect at least 1 in every 50,000 people. Symptoms usually first develop before the age of 25, although it can develop in people much older than this. Signs and symptoms of Friedreich’s ataxia can include: problems with balance and co-ordination, often causing wobbliness, clumsiness and frequent falls increasingly slurred, slow and unclear speech (dysarthria) increasing weakness in the legs – many people find walking difficult and need to use a wheelchair after around 10 to 20 years difficulty swallowing (dysphagia) abnormal curvature of the spine (scoliosis) total or partial vision loss and hearing loss diabetes thickening of the heart muscles (hypertrophic cardiomyopathy), which can cause chest pain, breathlessness and an irregular heartbeat loss of sensation in the hands and feet (peripheral neuropathy) The symptoms of Friedreich’s ataxia usually get gradually worse over many years. People with the condition tend to have a shorter life expectancy than normal. Many people live until at least their 30s, and some can live into their 60s or beyond.
Ataxia-Telangiectasia
Ataxia-telangiectasia (AT) is a rarer type of hereditary ataxia. Symptoms usually begin in early childhood, although they can sometimes develop later. Signs and symptoms of AT can include: difficulty walking – most children need to use a wheelchair by 10 years of age increasingly slurred, slow and unclear speech (dysarthria) difficulty swallowing (dysphagia) small spider-like clusters of red blood vessels in the corner of their eyes and on their cheeks (telangiectasias) very slow eye movements, which may mean the person has to move their head a lot to compensate for this a weakened immune system – children with AT are more vulnerable to infections, particularly infections of the sinuses, lungs and airways, such as pneumonia an increased risk of cancer, particularly acute lymphoblastic leukaemia or lymphoma The symptoms of AT tend to get worse quite quickly. People with the condition usually live until the age of 19 to 25, although some may live into their 50s.
Spinocerebellar Ataxias
Spinocerebellar ataxias (SCAs) are a group of hereditary ataxias that often don’t begin until adulthood, affecting people from the age of 25 up to 80, depending on the type of SCA. Occasionally, some types of SCA begin in childhood. The symptoms vary depending on the type of SCA. They can include: problems with balance and co-ordination – many people find walking difficult and need to use a wheelchair after a few years increasingly slurred, slow and unclear speech (dysarthria) difficulty swallowing (dysphagia) muscle stiffness and cramps loss of sensation in the hands and feet (peripheral neuropathy) memory loss and difficulties with spoken language slow eye movement, which means people have to move their head to compensate reduced bladder control (urinary urgency or incontinence)
Episodic Ataxia
Episodic ataxia is a rare and unusual type of hereditary ataxia where someone experiences episodes of ataxia, but the rest of the time they have no or only mild symptoms. During an episode, someone with episodic ataxia may experience: problems with balance and co-ordination slurred, slow and unclear speech (dysarthria) muscle spasms involuntary eye movements (nystagmus) vertigo, migraines and tinnitus Episodic ataxia usually first develops during the teenage years. The episodes can last from several minutes to hours and are usually the result of certain triggers, such as sudden movement, stress, exercise, caffeine or alcohol. The symptoms of episodic ataxia may disappear as a person gets older, although sometimes the condition gets gradually worse over time. Medication can often help control attacks, and life expectancy is usually normal.
Other (Ataxia)
Cause?
Acquired
Ataxia with vitamin E deficiency
Congenital cerebellar ataxia
Degenerative
Hereditary
Idiopathic late-onset cerebellar
Wilsons
Other
Other
Acquired
this can affect people of any age and usually develops very quickly over the course of a few days, or sometimes hours; it may improve over time, stay the same or get slowly worse
Idiopathic late-onset cerebellar ataxia
this usually begins at around 50 years of age and gets slowly worse over time
Ataxia with vitamin E deficiency
a similar condition to Friedreich’s ataxia caused by problems with the body’s ability to use vitamin E in the diet; it’s often possible to control the symptoms with vitamin E supplements
Congenital cerebellar ataxia
This type of ataxia results from damage to the cerebellum that’s present at birth.
Wilsons
People with this condition accumulate copper in the brain, liver and other organs. This can cause ataxia and other neurological problems.
Hereditary
Some types of ataxia and some conditions that cause ataxia are hereditary. If you have one of these conditions, you may have been born with a mutation in a certain gene that makes irregular proteins. The abnormal proteins hamper the function of nerve cells, primarily in the cerebellum and spinal cord, and cause them to degenerate. As the disease progresses, coordination problems worsen. You can inherit a genetic ataxia from either a dominant gene from one parent (autosomal dominant disorder) or a recessive gene from both parents (autosomal recessive disorder). In a recessive disorder, the parents are unaffected, and there may be affected siblings. Different gene mutations cause different types of ataxia, most of which are progressive. Each type causes poor coordination, but each has specific signs and symptoms.
Degenerative
Multiple system atrophy. This affects adults around age 50. In addition to ataxia, other problems associated with this condition include bladder incontinence, low blood pressure or fainting on standing, and REM sleep behavior disorder (yelling, kicking or punching in sleep).
Other
Acquired Causes?
Alcohol
Medications
Toxins
Vitamins
Thyroid problems
Stroke
Multiple sclerosis
Autoimmune diseases
Infections
COVID-19 infection
Paraneoplastic syndromes
Abnormalities in the brain
Head trauma
Cerebral palsy
Multi-Select if needed
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Carer Questions?
Do you have a carer?
No
Yes
Other
Other
Is you carer?
Parent
Partner
Social Services
Other
Other
Carer hours?
1-4 hours daily
5 – 8 hours daily
Live-in
Assisted living at home
Assisted living (social services)
Other
Other
Any carer problems?
No – excellent care
No – good care
General poor care
Multiple carers
Personality clash
Other
Other
Anything to add about carer?
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Mobility
Mobility Device?
*
Not Needed
Crutches
Supporting frame
Tilt-in-space
Manuel wheelchair
Standing wheelchair
Motorised wheelchair
Standing frame
Other
Other
Assistive Technology?
*
Not Needed
Electronic communication board
Low-tech communication board
Speech-generating device
Eye-tracking device
Typing and writing devices
Hearing Aids
Cochlear Implant
Other
Other
Multi-select
Do you have difficulty looking after your home, e.g., DIY, housework, cooking?
No
Yes
Cannot do
Do you have difficulty washing?
No
Yes
Cannot do
Do you have difficulty carrying bags of shopping?
No
Yes
Cannot do
Had difficulty dressing?
No
Yes
Cannot do
Do you have problems walking half a mile?
No
Yes
Carer Assistance
Had problems doing up buttons or shoelaces?
No
Yes
Carer assistance
Do you have problems walking 100 yards?
No
Yes
Cannot do
Do you have problems writing clearly?
No
Yes
Needed someone else to accompany you when you went out?
No
Yes
Sometimes
Do you have difficulty cutting up your food?
No
Yes
Carer assistance
Do you feel frightened or worried about falling over in public?
No
Yes
Sometimes
Do you have difficulty holding a drink without spilling it?
No
Yes
Sometimes
Do you have difficulty getting around in public?
No
Yes – poor accessibility
Yes – socially anxious
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Any, Additional Disabilities
Do you have any additional disabilities?
Autism
Epilepsy
Hearing Loss
Medical Illness
Sight Loss
Other
Other
Hearing Loss
Mild
Moderate
Severe
Deaf/BSL User
Other
Other
Sight Loss
Mild
Moderate
Severe
Blind
Other
Other
Epilepsy Type?
Absence
Clonic
Focal
Generalised
Tonic-Clonic
Other
Other
Absence
Absence seizures are more common in children than adults and can happen very frequently. During an absence a person becomes unconscious for a short time. They may look blank and stare, or their eyelids might flutter. They will not respond to what is happening around them. If they are walking they may carry on walking but will not be aware of what they are doing.
Clonic
Clonic seizures involve repeated rhythmical jerking movements of one side or part of the body or both sides (the whole body) depending on where the seizure starts. Seizures can start in one part of the brain (called focal motor) or affect both sides of the brain (called generalised clonic).
Focal
As the seizure progresses, a person can experience motor and non-motor symptoms. Some motor symptoms of focal seizures include: muscle twitching jerking spasms repeated movements, like clapping or chewing Non-motor symptoms do not affect how someone moves. However, they may cause confusion or changes in emotions. Some non-motor symptoms of focal seizures include: waves of hot or cold goosebumps lack of movement changes in emotions or thoughts
Generalised
Generalised onset seizures affect both sides of the brain at once and happen without warning. The person will be unconscious (except in myoclonic seizures), even if just for a few seconds and afterwards will not remember what happened during the seizure. Unknown onset seizures are sometimes used to describe a seizure if doctors are not sure where in the brain the seizure starts. This may happen if the person was asleep, alone or the seizure was not witnessed. If there is not enough information about a person’s seizure, or if it is unusual, doctors may call it an unclassified seizure.
Tonic Clonic
These are the seizures that most people think of as epilepsy. The person becomes unconscious their body goes stiff and if they are standing up they usually fall backwards. They jerk and shake as their muscles relax and tighten rhythmically.
Other Epilepsy
Best describe what other Epilepsy is
What medical illness?
What is the other?
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Your Symptoms
Any, Muscle Stiffness in Legs
No
Mild
Moderate
Severe
Any, Muscle Stiffness Arms
No
Mild
Moderate
Severe
Any, Walking Problems?
No
Mild
Moderate
Severe
Cannot walk
Any Speech Problems?
No problems
Slurred (Mild)
Slurred (Moderate)
Slurred (Severe)
Cannot speak
Any, Writing Problems
No
Mild
Moderate
Severe
Cannot write
Any, Balance Problems
No
Mild
Moderate
Severe
Any, Swallowing Problems?
No
Mild
Moderate
Severe
Any, Cognitive Issues?
No
Mild
Moderate
Severe
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Health
Medication?
None
Antidepressants
Antipsychotics
Anti-Anxiety
Heart Medication
Diabetes Medication
Mood Stabilisers
Stimulants
Other
Other
Any Medical Issues?
*
Yes
No
What? (multi-select)
Alzheimers
Arthritis
Asthma
Blood Pressure
Cancer
Infectious Disease
Lung Conditions
Diabetes
Heart Issues
Stroke
Other
Other
Anything to add Medically?
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Pain
Do you have daily chronic pain?
No
Yes
Other
Other
Do you have aches and pains in your joints or body?
No
Yes
Other
Other
Do you have muscle cramps & spasms?
No
Yes
Other
Other
Are the muscle cramps or spasms painful?
No
Yes
Other
Other
Do you favour one side of your body?
No
Yes
Other
Other
Can you feel unpleasantly hot or cold?
No
Yes
Other
Other
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Anxieties
Do you feel anxious in public?
No
Yes
Sometimes
Do you lack support in the ways you need from family or close friends
No
Yes
Sometimes
Do you feel ignored by people?
No
Yes
Sometimes
Do you lack support in the ways you need from your partner or spouse?
No
Yes
Sometimes
Do you feel worried about people’s reactions to you?
No
Yes
Sometimes
Do you feel shamed in public?
No
Yes
Sometimes
Do you feel confined to the house more than you would like?
No
Yes
Sometimes
Do you feel you must conceal your disability from people
No
Yes
Sometimes
Obvious
Do you feel accessible services in public spaces hinder your ability to have a normal life?
No
Yes
Sometimes
Does disability affect your close personal relationships?
No
Yes
Sometimes
Do you feel frightened or worried about falling over in public?
No
Yes
Do you feel people try and take away your independence by over sympathising
No
Yes
Sometimes
Do you feel embarrassed in public?
No
Yes
Sometimes
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General Questions
Do you undereat?
No
Generally yes
Skip meals
Severely undereat
Bulimia traits
Other
Other
Do you overeat?
No
Generally yes
Severely overeat
Other
Other
Do you have hallucinations
No
Few days
Most days
Almost every day
Other
Other
Your hallucinations are:
Mild
Moderately disturbing
Very disturbing
Other
Other
Do you have flashbacks? (if applicable)
No
Few days
Most days
Almost every day
Other
Other
Your flashbacks are:
Mild
Moderately disturbing
Very disturbing
Other
Other
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NHS Past Counselling?
Any, Past Counselling?
*
Yes
No
Approx, how many years ago?
Approx, how many sessions?
Any other NHS sessions ?
No
Yes
Approx, how many years ago?
Approx, how many sessions?
Any other NHS sessions??
No
Yes
Details on how many and year approx
Experience of NHS Counselling
Good
Did not understand my disability
Poor
Other
Other
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Any other counselling?
What other counselling
No
Self-paid
Employer provided
School or university
Insurance
Profesional organisation
Other
Other
Could you add the approx year & how many sessions?
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Assessment
Do you ever feel like life is not worth living?
No
Few Days
Most Days
Almost Every Days
Have you ever tried to commit suicide?
No
Yes
Other
Other
Approx how many years ago did you try to take your life?
How often do you have suicidal thoughts?
Few Days
Most Days
Almost Every Days
Do you know how to end your life?
No
Yes
Other
Other
Have you made plans to end your life?
No
Yes
Other
Other
Do you ever feel like self harming?
No
Yes
Other
Other
Have you self harmed in the past?
No
Yes
Other
Other
Approx how many years ago did you self harm?
Other, do you ever feel like self-harming?
Best describe your thoughts
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Brief Summary
Would you like to add anything?
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Sign or Type
I am signing this form on behalf of the person who would like counselling.
I confirm the information in this form is true to the best of my knowledge. I understand the information within this document will not be shared with any organisation or person without my written consent.
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