Pen'sup's Journal

Pen'sup: Sex: F; Data Quality: 2 stars; ALS: 5 yrs; Bi-Pap; Bulbar: none; Arms: moderate; Chest: moderate; Legs: mild

Pen'sup: Female, 64 years; Livermore (Near San Francisco), CA

Primary Condition: ALS and 2 more ▼
First symptom: Sep 2006
Diagnosis: Jan 2008

Stopped treatment

Feeding Tube
- Stopped: Mar 20, 2012
- Reason: Doctor's advice and Other
Pen'sup stopped taking the treatment Feeding Tube • May 09, 2012

the reason I had feeding tube inserted was that my breathing had gone down to 53%. so the surgery could be done prophalactically - when i lose ability to swallow i will al ready have tube and not have to have surgery

What else would you like to share about stopping this treatment?
FVC

53%

Pen'sup completed the FVC survey for May 9, 2012 • May 09, 2012
Congratulations, your FVC is higher. What sort of things are helping your ALS symptoms?
FRS

28
- none Head
- moderate Arms
- moderate Torso
- mild Legs
Pen'sup completed the FRS survey for May 9, 2012 • May 09, 2012
What sort of things are making your ALS symptoms worse?
Added treatment

Feeding Tube
- Started: Mar 19, 2012
- Dosage: daily
- Purpose: Inability to swallow
Pen'sup added the treatment Feeding Tube • May 09, 2012
What else would you like to share about this treatment?
Added treatment

Wheelchair (powered)
- Started: Jan 15, 2012
- Dosage: daily
- Purpose: Improve mobility
Pen'sup added the treatment Wheelchair (powered) • May 09, 2012
What else would you like to share about this treatment?
Added treatment

Wheelchair (powered)
- Started: Jan 15, 2012
- Dosage: daily
- Purpose: Improve mobility
Pen'sup added the treatment Wheelchair (powered) • May 09, 2012
What else would you like to share about this treatment?
Added treatment

BiPAP w/humidifier
- Started: Sep 15, 2011
- Dosage: 13 hr daily
- Purpose: Breathing difficulty
Pen'sup added the treatment BiPAP w/humidifier • May 09, 2012
What else would you like to share about this treatment?
Added treatment

BiPAP w/humidifier
- Started: Sep 15, 2011
- Dosage: 13 hr daily
- Purpose: Breathing difficulty
Pen'sup added the treatment BiPAP w/humidifier • May 09, 2012
What else would you like to share about this treatment?
Hospitalization

Feeding Tube
- Admitted: Apr 15, 2012
- Discharged: Apr 16, 2012
Pen'sup added a hospitalization for Feeding Tube • May 09, 2012
What else would you like to share about this hospitalization?
Added treatment

Feeding Tube
- Started: Mar 19, 2012
- Dosage: daily
- Purpose: Inability to swallow
Pen'sup added the treatment Feeding Tube • May 09, 2012
What else would you like to share about this treatment?
Added

Symptom Update
- mild Restless feeling in legs
- none Hyperventilation
- none Depression with anxiety
- moderate Anxious mood
- none Nausea
- none Emotional lability
- severe Atrophy of right arm muscles
- moderate Weakness in stomach muscles
- mild Muscle tension
- mild Fatigue
- moderate Claw-like cramps in hands
- moderate Shortness of breath (dyspnea)
- mild Pain
- none Dizziness
- moderate Atrophy of right shoulder muscles
- mild Weight gain
- moderate Weakness in shoulder
- none Stiffness/Spasticity
- moderate Hoarseness of voice
- moderate Back pain
- none Problems concentrating
- severe Fasciculations
- moderate Cramps under chin
- severe Atrophy of right hand muscles
- moderate Nail ridges
- mild Lack of motivation
- none Depressed mood
- none Acid reflux
- mild Abdominal cramps
- none Low self esteem
- none High Cholesterol
- none Heartburn
- none Excessive yawning
- moderate Constipation
- moderate Atrophy of left hand muscles
- moderate Weakness in left arm
- mild Tiredness
- moderate Stress
- moderate Insomnia
- none Inability to experience pleasure (anhedonia)
- moderate Fingers curl
- none Elevated blood pressure
- severe Weakness in right hand
- none Stomach pain
- mild Cramps
- severe Weakness in right arm
- none Headaches
- none Excess saliva
- See more
Pen'sup updated heryour symptoms for May 9, 2012 • May 09, 2012
What else would you like to share about these symptoms?
Added treatment

Wellbutrin XL
- Started: Feb 11, 2006
- Dosage: 3 x 150 mg/24 hours daily
- Purpose: Depressed mood, Tiredness, and Major Depressive Disorder
Pen'sup added the treatment Wellbutrin XL • May 09, 2012
What else would you like to share about this treatment?
2 stars
Pen'sup lost a star • Mar 21, 2012
Nice work! One more star and you get a PLM t-shirt!
Updated outcome

Mood Map
- Function
- Distress
- External Stress
- Depression
- Emotional
- Compulsion
- Anxiety
- Mania
Pen'sup completed the Mood Map survey for Jan 25, 2012 • Jan 25, 2012
Better? Worse? What is affecting your mood?
Updated outcome

QOL
- Best Social
- Best Mental
- Bad Physical
Pen'sup completed the QOL survey for Jan 25, 2012 • Jan 25, 2012
What sort of things are negatively affecting your Quality of Life?
FVC

49%

Pen'sup completed the FVC survey for Jan 25, 2012 • Jan 25, 2012
What sort of things are making your ALS symptoms worse?
FRS

30
- none Head
- mild Arms
- mild Torso
- mild Legs
Pen'sup completed the FRS survey for Jan 25, 2012 • Jan 25, 2012
What sort of things are making your ALS symptoms worse?
Added

Symptom Update
- mild Restless feeling in legs
- none Hyperventilation
- none Depression with anxiety
- mild Anxious mood
- none Nausea
- none Emotional lability
- none Decreased appetite
- severe Atrophy of right arm muscles
- moderate Weakness in stomach muscles
- mild Muscle tension
- mild Fatigue
- severe Claw-like cramps in hands
- moderate Shortness of breath (dyspnea)
- mild Pain
- none Dizziness
- moderate Atrophy of right shoulder muscles
- none Weight gain
- moderate Weakness in shoulder
- none Stiffness/Spasticity
- moderate Hoarseness of voice
- none Back pain
- none Problems concentrating
- moderate Fasciculations
- mild Cramps under chin
- severe Atrophy of right hand muscles
- moderate Nail ridges
- mild Lack of motivation
- none Depressed mood
- none Acid reflux
- none Abdominal cramps
- none Low self esteem
- none High Cholesterol
- none Heartburn
- none Excessive yawning
- none Constipation
- mild Atrophy of left hand muscles
- moderate Weakness in left arm
- mild Tiredness
- none Stress
- none Insomnia
- none Inability to experience pleasure (anhedonia)
- severe Fingers curl
- moderate Elevated blood pressure
- mild Weakness in right hand
- none Stomach pain
- mild Cramps
- moderate Weakness in right arm
- none Headaches
- none Excess saliva
- See more
Pen'sup updated heryour symptoms for Jan 25, 2012 • Jan 25, 2012
What else would you like to share about these symptoms?
InstantMe

Very good
Pen'sup added an InstantMe for Dec 22, 2011 • Dec 22, 2011 7:05PM

just woke up from nap

What's making you feel very good?
Weight

138 lb 8 oz

BMI

23.8
Pen'sup updated heryour weight for Dec 22, 2011 • Dec 22, 2011
Is there anything in particular that influenced this weight decrease?
Show more

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