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Thank you again for offering to help others.

ALS is complicated puzzle that has confounded medical science to date. What we do know is that early intense therapy makes a difference (see study below). Care that includes early diagnosis by a neurologist, nutritional support, early gastric feeding tube, medication, and early respiratory support. For all that we still fall short.

Specialized multidisciplinary care improves ALS survival in Belgium: a population-based retrospective study

Frederik Hobin,Joke De Vocht, Nikita Lamaire 9/2023

https://doi.org/10.1080/21678421.2024.2304058

https://www.researchgate.net/publication/342750824_Characteristics_of_Amyotrophic_Lateral_Sclerosis_in_Lebanon-a_Chart_Review

ALS Disease Slope varies by type and age.

Bulbar ALS has a much faster disease slope than does "Classic" ALS and thus will have a slope closer to the fast progressors in the chart above.

My ALS Functional Rating Scale

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Symptoms date of onset

First name

Email

Date of Diagnosis

Salivation

Normal

Slight but definite excess of saliva in mouth; may have night time drooling

Moderately excessive saliva; may have minimal drooling.

Marked excess saliva with some drooling.

Marked drooling; requires constant tissue or handkerchief

Swallowing

Normal

Early eating problems; occasional choking.

Dietary consistency changes

Needs supplemental tube feedings

Nothing by mouth, exclusively tube feeding.

Cutting food and handling utensils. No Gastrostomy tube.

Normal

Soomewhat slow and clumsy, no help required.

Can cut most foods although clumsy and slow, some help needed.

food must be cut by somenone else, but can still feed slowly.

Needs to be fed.

Cutting food and handling utensils. With Gastrostomy.

Normal

Clumsy, but able to perform with manipulations independently

Some help needed with closures and fasteners.

Provides minimal assistance to care giver.

Unable to perform any aspect of task.

Dressing and hygine

Normal

Independent and complete self-care with effort or decreased efficiency.

Intermittent assistance or substitute methods.

Needs attendent for self care.

Total dependece.

Turning in bed and adjustion bed clothes.

Normal.

Somewhat slow and clumsy but not help needed.

Can trun alone or adjust sheets but with difficulty.

Can initiate but not trun or adjust sheets alone.

Helpless.

Problems breathing

None

Occurs when walking

Occurs with one or more of the following: eating, bathing, dressing

Occurs at rest, difficulty, considering using mechanical respiratory support.

Significant difficulty, considering using mechanical respiratory support.

Problems breathing laying down

None

Some difficulty sleeping at nights due to shortness of breath. Does not routinely use more than 2 pillows.

Needs extra pillow in order to sleep (more than 2).

Can only sleep sitting up

Unable to sleep

Breathing Insufficiency

None

Intermittent use of BiPAP

Continous use of BiPAP at night

Continous use of BIPAP night and day

Invasive mechanical ventilation by intubation or tracheostomy

Medicatons I am taking.

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Female

I have /am a smoker

What are you doing differently than standard care?

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Thank you again for offering to help others.

​Specialized multidisciplinary care improves ALS survival in Belgium: a population-based retrospective study

ALS Disease Slope varies by type and age.

My ALS Functional Rating Scale

Section Title

Specialized multidisciplinary care improves ALS survival in Belgium: a population-based retrospective study