ALS Information Form

Step 1 of 12

Name(Required)

First Last

Email(Required)

Address(Required)

Street Address City State ZIP Code

Primary Phone Number(Required)

Cell

Age

D.O.B(Required)

MM slash DD slash YYYY

Marital Status

Married

Divorced

Living with Partner

Single

Widow

Occupation

In case of emergency contact:

Relationship

Primary Care Physician's Name

EMERGENCY CONTACT

In the event we cannot contact you by the mean’s you’ve provided above, we would like to know if we have permission to speak to your spouse or significant other about your treatment. By giving the information below you are giving us permission to speak with your spouse or significant other about your treatment.

Spouse's Name

First Last

Spouse's Phone

Caregiver Name

First Last

Caregiver's Phone

Caregiver's Email

Pharmacy Name

Pharmacy Phone

Pharmacy Fax

Address

Street Address City State ZIP Code

Additional Pharmacy Name

Additional Pharmacy Phone

Additional Pharmacy Fax

Additional Address

Street Address City State ZIP Code

MEDICAL HISTORY

Any known drug allergies

Medications

Nutritional/Vitamin Supplements

Surgeries

Please list down all surgeries you had and when they were done.

Have you served in the Military?

YES

What Branch?

Have you been exposed to:

Have you had exposure to herbicides or pesticides regularly?

YES

Have you had exposure to diesel fuel or fumes on a regular basis?

YES

Have you had exposure to electrical shock, that is, a shock that caused a burn or caused you to be thrown off your feet?

YES

If “Yes’ was it prior to your ALS diagnosis?

YES

Do you currently have any metallic objects, such as joint replacements?

YES

Have you ever experienced any instances where you hit your head or neck, resulting in one or more of the following symptoms: Being dazed, Confused, Disoriented, “Seeing Stars”.

YES

At the time of incident did you: not remember the incident, experience a headache, dizziness, nausea, irritability, or memory impairments?

YES

Following the incident did you lose consciousness?

YES

If yes, describe incident and date/dates

YES

Have you ever had psychological or psychiatric condition for which you consulted a health professional?

YES

Please describe

Do you have Allergies? Have they been diagnosed by a physician only?

What is your blood type?

FAMILY HISTORY

List name and age when diagnosed.

ALS/MND CLINICAL INFORMATION

In which month and what year did you get your first symptoms of ASL/MND?

Right upper limb muscle weakness

Left upper limb muscle weakness

Right lower limb muscle weakness

Left lower limb muscle weakness

Muscle twitches (fasciculations)

Slurred speech

Difficulty swallowing

Shortness of breath

Spasticity (increased muscle tone)

Other (please specify)

What type of ALS/MND have you been diagnosed as having?

Amyotrophic lateral sclerosis (“classic” ASL)
Pattern; Mixed upper and lower motor neuron signs in limbs and bulbar region

Progressive muscular atrophy
Pattern; Pure lower motor neuron syndrome

Primary lateral sclerosis
Pattern: Pure upper motor neuron syndrome

Progressive bulbar palsy
Pattern; Isolated upper or lower motor neuron signs, or both, only in bulbar muscles (which are involved, for example, in speech and swallowing)

ALS/MND and frontotemporal dementia
Pattern: A combination of any type of ALS/MND and frontotemporal dementia

I do not know what type of ALS/MND I have been diagnosed with.

Other

Have you had a positive genetic test for a known ALS/MND gene?

YES

I do not know

Has your personality changed since you were diagnosed with ALS?

YES

I do not know

If so, in what way?

Please compare your memory now, to what it was before you got your first symptom of ALS/MND. We understand this might be difficult, but we are interested in your opinion.

FUNCTIONAL STATUS

Item 1: SPEECH

4 • Normal speech process

3 • Detectable speech disturbance

2 • Intelligible with repeating

1 • Speech combined with non-vocal communication

0 • Loss of useful speech

Item 2: SALIVATION

4 • Normal

3 • Slight but definite excess of saliva in mouth; may have nighttime drooling

2 • Moderately excessive saliva; may have minimal drooling (during the day)

1 • Marked excess of saliva with some drooling

0 • Marked drooling; requires constant tissue or handkerchief

Item 3: SWALLOWING

4 • Normal eating habits

3 • Early eating problems – occasional choking

2 • Dietary consistency changes

1 • Needs supplement tube feeding

0 • NPO (exclusively parenteral or enteral feeding)

Item 4: HANDWRITING

4 • Normal

3 • Slow or sloppy: all words are legible

2 • Not all words are legible

1 • Able to grip pen, but unable to write

0 • Unable to grip pen

Item 5a: CUTTING FOOD AND HANDLING UTENSILS - Patients without gastrostomy Use 5b if >50% is through g-tube

4 • Normal

3 • Somewhat slow and clumsy, but no help needed

2 • Can cut most foods (>50%), although slow and clumsy; some help needed

1 • Food must be cut by someone, but can still feed slowly

0 • Needs to be fed

Item 5b: CUTTING FOOD AND HANDLING UTENSILS - Patients with gastrostomy 5b option is used if the patient has a gastrostomy and only if it is the primary method (more than 50%) of eating

4 • Normal

3 • Clumsy, but able to perform all manipulations independently

2 • Some help needed with closures and fasteners

1 • Provides minimal assistance to caregiver

0 • Unable to perform any aspect of task

Item 6: DRESSING AND HYGIENE

4 • Normal function

3 • Independent and complete self-care with effort or decreased efficiency

2 • Intermittent assistance or substitute methods

1 • Needs attendant for self-care

0 • Total dependence

Item 7: TURNING IN BED AND ADJUSTING BED CLOTHES

4 • Normal function

3 • Somewhat slow and clumsy, but no help needed

2 • Can turn alone, or adjust sheets, but with great difficulty

1 • Can initiate, but not turn or adjust sheets alone

0 • Helpless

Item 8: WALKING

4 • Normal

3 • Early ambulation difficulties

2 • Walks with assistance

1 • Non-ambulatory functional movement

0 • No purposeful leg movement

Item 9: CLIMBING STAIRS

4 • Normal

3 • Slow

2 • Mild unsteadiness or fatigue

1 • Needs assistance

0 • Cannot do

Item 10: DYSPNEA

4 • None

3 • Occurs when walking

2 • Occurs with one or more of the following: eating, bathing, dressing (ADL)

1 • Occurs at rest: difficulty breathing when either sitting or lying

0 • Significant difficulty: considering using mechanical respiratory support

Item 11: ORTHOPNEA

4 • None

3 • Some difficulty sleeping at night due to shortness of breath, does not routinely use more than two pillows

2 • Needs extra pillows in order to sleep (more than two)

1 • Can only sleep sitting up

0 • Unable to sleep without mechanical assistance

Item 12: RESPIRATORY INSUFFICIENCY

4 • None

3 • Intermittent use of BiPAP

2 • Continuous use of BiPAP during the night

1 • Continuous use of BiPAP during day & night

0 • Invasive mechanical ventilation by intubation or tracheostomy

DENTAL HISTORY

Have you ever had an amalgam restoration? (silver filling)

YES

How many?

Hoe many currently?

LIFESTYLE

Habits/Hobbies

How often are you engaged in these daily activities?

How often were you engaged in these activities prior to ALS diagnosis?

If yes, how often?

Do you meditate?

How many hours of sleep do you get often?

PERSONALITY

Below is a collection of phrases that can describe some aspects of a person’s personality. For each item, selectbthe option that best indicates how much you agree with the statements as they apply to you. Please select the option that would have applied to you BEFORE your ALS/MND diagnosis. Rate on a scale of 1-10.

I am able to adapt when changes occur