SusyQ's Journal

SusyQ: Sex: F; Data Quality: 2 stars; PLS: 9 yrs; Bi-Pap Wheelchair Feeding tube; Bulbar: moderate; Arms: mild; Chest: moderate; Legs: moderate

SusyQ: Female, 67 years; Weatherford, TX

Primary Condition: PLS and 10 more ▼

First symptom: Jul 2003
Diagnosis: Nov 2008

Interests: Faith, and Research

SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

Good
SusyQ added an InstantMe for Mar 28, 2013 Mar 28, 2013 5:24PM

Still with the wheezing!! Enough already!! Saw lung doc today and even though today is a good day he started me back on antibiotics and predizone and added 2 more nebulizers to try to stabilize me. Lung capacity at 54% but that is up from 51% 3 mo ago. Just take it day by day and try not to get pneu. again as that is a BIG drag. So, what's up with you??
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

FVC: 54%

SusyQ completed the FVC survey for Mar 28, 2013 Mar 28, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
PFRS: 35
- Most Fatigue
- Most Sleep
- Most Stiffness
- Most Pain
- None External Stress
SusyQ completed the PFRS survey for Mar 28, 2013 Mar 28, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

Very good
SusyQ added an InstantMe for Mar 24, 2013 Mar 24, 2013 2:55PM

It is spring and my migraines are worse and of course sinus is worse which feeds sinus infection and bronchitis or pneumonia. Just finished latest rounds of antibiotics so wheezing is at minimum but still wake up at night with chest rattling and have to cough until clear. Bipap makes night cough worse but have to have it. fingers tremble more and you can tell from typing how fingers 'stutter'. Cold makes it worse, Left thumb wants to form 'hammer' and right is pulling into palm. Thank God, I can still use all 10!! Happy Easter, everyone.
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

141 lb 6 oz BMI: 25.9
SusyQ updated her weight for Mar 21, 2013 Mar 24, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

2 stars
SusyQ lost a star Feb 28, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
QOL
- Good Social
- Best Mental
- Bad Physical
SusyQ completed the QOL survey for Feb 25, 2013 Feb 25, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

142 lb 8 oz BMI: 26.1
SusyQ updated her weight for Feb 25, 2013 Feb 25, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

Good
SusyQ added an InstantMe for Feb 21, 2013 Feb 21, 2013 5:01PM

No big changes. Just gradual creeping up of stiffness and spacicty. I take it day by day and unlike ALS which progresses rapidly, I measure changes by the months and years. I do wheeze more since I had pneumonia and tire easier. I notice that I use auxillary muscles more breathing now, expesially when tired or with exertion. Forgive typing and sp. take more shortcuts now to save hands.
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
Symptom Update
- moderate Acid reflux
- none Anxious mood
- mild Atrophy of right arm muscles
- moderate Back pain worsened
- severe Balance problems
- mild Bit tongue
- mild Brain fog
- moderate Breathing difficulty
- none Butterfly (malar) rash
- none Chest pain
- none Chest pressure
- none Chest tightness
- moderate Clonus spasms
- severe Communication difficulties
- moderate Constipation
- moderate Decreased respiratory function
- none Depressed mood
- mild Difficulty urinating (dysuria)
- moderate Difficulty with fine motor skills
- moderate Dry eyes
- mild Elevated blood pressure
- none Emotional lability
- none Excessive yawning
- moderate Excess mucus
- mild Excess saliva
- moderate Fasciculations
- moderate Fatigue
- mild Foot drop
- severe Headaches
- mild Incontinence
- moderate Insomnia
- moderate Jerky movements (dyskinesia)
- moderate Joint pain
- moderate Light sensitivity (photophobia)
- moderate Loss of manual dexterity
- mild Memory problems
- moderate Migraine headaches
- severe Mobility decreased
- moderate Muscle and joint pain
- moderate Muscle spasms
- moderate Muscle weakness in legs
- mild Nausea
- moderate Pain
- severe Pain in feet
- moderate Pain in lower back
- severe Pins and needles in feet
- moderate Plantar reflex absent
- moderate Ringing in ears (tinnitus)
- severe Spasms
- moderate startle response heightened
- moderate Stiffness/Spasticity
- mild Stomach upset
- moderate Stress incontinence
- severe Swallowing difficulty (dysphagia)
- moderate Tremor in fingers
- none Vitamin D deficiency
- moderate Weak diaphram
- moderate Weakness in legs
- mild Weakness in neck (head drop)
- See more
SusyQ updated her symptoms for Feb 21, 2013 Feb 21, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
ALS (Amyotrophic Lateral Sclerosis)
- First symptom: ?
- Diagnosis: ?
SusyQ updated the condition ALS (Amyotrophic Lateral Sclerosis) Feb 21, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

3 stars
SusyQ earned a star! Feb 21, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

142 lb BMI: 26.0
SusyQ updated her weight for Jan 31, 2013 Jan 31, 2013
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
Permobil C300 Treatment Evaluation
- Perceived effectiveness for Muscle weakness in legs: Major
- Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Major
- Side Effects: None
- Adherence: Always
- Burden: Not at all
SusyQ added a treatment evaluation for Permobil C300 Dec 28, 2012
2 comments from other members. Only showing public users' comments. Sign up to see all comments!
- SusyQ
  
  Yes, the permobile is a top quality chair and gives me the freedom to do much for myself that otherwise I could no longer do. I love my chair.
  
  about 4 months ago
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
PFRS: 40
- Most Fatigue
- All Sleep
- All Stiffness
- Some Pain
- None External Stress
SusyQ completed the PFRS survey for Dec 28, 2012 Dec 28, 2012
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

143 lb BMI: 26.2
SusyQ updated her weight for Dec 28, 2012 Dec 28, 2012
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
Permobil C300
- - Started: Mar 1, 2010
  - Current Dosage: daily
- Purpose: ALS and Muscle weakness in legs
- View Latest Evaluation
SusyQ updated the treatment Permobil C300 Dec 28, 2012
- Added
  - Started: Mar 01, 2010
  - Dosage: daily
  - Purpose: ALS (Amyotrophic Lateral Sclerosis) and Muscle weakness in legs
  - Mar 01, 2010
- Evaluated
  - View Evaluation
  - Dec 28, 2012
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
Lyrica
- - Started: Aug 25, 2010
  - Current Dosage: 150 mg daily
- Purpose: Fibromyalgia
- View Latest Evaluation
SusyQ updated the treatment Lyrica Dec 28, 2012
- Added
  - Started: Aug 25, 2010
  - Dosage: 25 mg daily
  - Purpose: Fibromyalgia
  - Aug 25, 2010
- Evaluated
  - View Evaluation
  - Apr 22, 2011
- Changed Dosage
  - Dosage: 500 mg daily
  - May 04, 2012
- Changed Dosage
  - Dosage: 150 mg daily
  - Nov 27, 2012
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS
Fibromyalgia
- First symptom: Feb 28, 1967
- Diagnosis: Feb 28, 1985
SusyQ updated the condition Fibromyalgia Dec 28, 2012
SusyQ

Sex: F

Data Quality: 2 stars

Bulbar: moderate

Arms: mild

Chest: moderate

Legs: moderate

I am: g

I have:
PLS

142 lb 6 oz BMI: 26.0
SusyQ updated her weight for Dec 17, 2012 Dec 19, 2012

no
Show more