DannyD's Journal

DannyD: Sex: M; Data Quality: 3 stars; ALS: 16 yrs; Bi-Pap; Bulbar: mild; Arms: mild; Chest: mild; Legs: moderate

DannyD: Male, 54 years; Leander, TX

Primary Condition: ALS and 3 more ▼

First symptom: Mar 1997
Diagnosis: Dec 2000

DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS

270 lb BMI: 35.6
DannyD updated his weight for May 12, 2013 May 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Folic Acid
- - Started: Jun 7, 2011
  - Current Dosage: 0.8 mg daily
- Purpose: Support brain health and ALS
DannyD updated the treatment Folic Acid May 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Diabetes Type 2
- First symptom: Jan 1, 2011
- Diagnosis: Feb 18, 2011
DannyD updated the condition Diabetes Type 2 May 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
FRS: 27
- mild Head
- mild Arms
- mild Torso
- moderate Legs
DannyD completed the FRS survey for Apr 16, 2013 Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS

270 lb BMI: 35.6
DannyD updated his weight for Apr 10, 2013 Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Symptom Update
- none Acid reflux
- none Anxious mood
- severe Balance problems
- moderate Bladder problems
- none Blurry vision
- mild Bowel urgency
- severe Central sleep apnea
- mild Constipation
- moderate Daytime sleepiness
- mild Depressed mood
- none Device malfunction
- none Diarrhea intermittent
- moderate Difficulty projecting voice
- moderate Difficulty turning over or moving in bed
- moderate Drowsiness
- moderate Elevated blood pressure
- mild Emotional lability
- mild Excessive thirst (polydipsia)
- moderate Excessive yawning
- mild Excess saliva
- none exercise
- none Fasciculations
- mild Fatigue
- mild Headaches
- none Heartburn
- mild Hyperreflexia
- none Insomnia
- mild Pain
- mild Slurred speech
- severe Startle easily (hyperexplexia)
- severe Stiffness/Spasticity
- moderate Urinary frequency
- moderate Urinary urgency
- none Withdrawal effects
- See more
DannyD updated his symptoms for Apr 16, 2013 Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Lisinopril
- - Started: Mar 1, 2009
  - Current Dosage: 60 mg daily
- Purpose: Hypertension
DannyD updated the treatment Lisinopril Apr 16, 2013
- Added
  - Started: Mar 01, 2009
  - Dosage: 10 mg daily
  - Purpose: Elevated blood pressure and Hypertension
  - Mar 01, 2009
- Changed Dosage
  - Dosage: 20 mg daily
  - Jul 06, 2009
- Changed Dosage
  - Dosage: 40 mg daily
  - Mar 06, 2010
- Changed Dosage
  - Dosage: 60 mg daily
  - Mar 19, 2010
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Lantus SoloStar
- - Started: Mar 23, 2011
  - Current Dosage: 120 intl units daily
- Purpose: Diabetes Type 2
DannyD updated the treatment Lantus SoloStar Apr 16, 2013
- Added
  - Started: Mar 23, 2011
  - Dosage: 100 units daily
  - Purpose: Diabetes Type 2
  - Mar 23, 2011
- Changed Dosage
  - Dosage: 35 intl units daily
  - Apr 07, 2011
- Changed Dosage
  - Dosage: 40 intl units daily
  - Apr 10, 2011
- Changed Dosage
  - Dosage: 45 intl units daily
  - Apr 13, 2011
- Changed Dosage
  - Dosage: 50 intl units daily
  - Apr 16, 2011
- Changed Dosage
  - Dosage: 55 intl units daily
  - Apr 19, 2011
- Changed Dosage
  - Dosage: 75 intl units daily
  - Apr 24, 2011
- Changed Dosage
  - Dosage: 100 intl units daily
  - May 01, 2011
- Changed Dosage
  - Dosage: 150 intl units daily
  - Jul 23, 2011
- Changed Dosage
  - Dosage: 100 intl units daily
  - Nov 24, 2011
- Changed Dosage
  - Dosage: 100 intl units daily
  - Nov 24, 2011
- Changed Dosage
  - Dosage: 100 intl units daily
  - Nov 25, 2011
- Changed Dosage
  - Dosage: 120 intl units daily
  - Jan 14, 2012
- Changed Dosage
  - Dosage: 120 intl units daily
  - Jan 14, 2012
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Citalopram
- - Started: May 1, 2007
  - Current Dosage: 20 mg daily
- Purpose: Depressed mood
DannyD updated the treatment Citalopram Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Atenolol
- - Started: Jun 27, 2010
  - Current Dosage: 50 mg daily
- Purpose: Hypertension
DannyD updated the treatment Atenolol Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Amlodipine
- - Started: Oct 14, 2010
  - Current Dosage: 5 mg daily
- Purpose: Hypertension
DannyD updated the treatment Amlodipine Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
ALS (Amyotrophic Lateral Sclerosis)
- First symptom: Mar 1, 1997
- Diagnosis: Dec 18, 2000
DannyD updated the condition ALS (Amyotrophic Lateral Sclerosis) Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS

3 stars
DannyD earned a star! Apr 16, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS

2 stars
DannyD lost a star Feb 19, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
GERD (Gastroesophageal reflux disease)
- First symptom: ?
- Diagnosis: ?
DannyD updated the condition GERD (Gastroesophageal reflux disease) Feb 04, 2013
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Prevacid
- - Stopped: Feb 01, 2007
  - Reason: Other
  - Started: Dec 20, 1999
  - Last Dosage: 30 mg daily
- Purpose: GERD and Other
DannyD updated the treatment Prevacid Feb 04, 2013
- Added
  - Started: Dec 20, 1999
  - Dosage: 30 mg daily
  - Purpose: GERD (Gastroesophageal reflux disease) and Other
  - Dec 20, 1999
- Stopped
  - Date: Feb 01, 2007
  - Reason: Other
  - Feb 01, 2007
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
FRS: 28
- mild Head
- mild Arms
- mild Torso
- moderate Legs
DannyD completed the FRS survey for Nov 21, 2012 Nov 21, 2012
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Clonidine Treatment Evaluation
- Perceived effectiveness for Stiffness/Spasticity: Slight
- Side Effects: None
- Adherence: Always
- Burden: Not at all
Advice & Tips

Clonidine was added to my pump in early 2008 because we thought Baclofen was causing bladder & blood pressure issues. After my pump failure and subsequent replacement we decided to discontinue the intrathecal clonidine. It was refilled with the baclofen every few months & I didn't have to remember to take it. The cost was covered by insurance so for me it was inexpensive. It appears to have had more of an impact on my B/P than previously thought as after it was discontinued my B/P was quite high and took several days and additional medication to control.

Cost

< $25 monthly

DannyD added a treatment evaluation for Clonidine from Nov 8, 2012 Nov 21, 2012
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS

275 lb BMI: 36.3
DannyD updated his weight for Nov 21, 2012 Nov 21, 2012
DannyD

Sex: M

Data Quality: 3 stars

Bulbar: mild

Arms: mild

Chest: mild

Legs: moderate

I am: g

I have:
ALS
Clonidine
- - Stopped: Nov 08, 2012
  - Reason: Did not seem to work and Other
  - Started: Jan 31, 2008
  - Last Dosage: 720.8 mcg daily
- Purpose: Hypertension, Hypertension, and Stiffness/Spasticity
- View Latest Evaluation
DannyD updated the treatment Clonidine Nov 21, 2012
- Added
  - Started: Jan 31, 2008
  - Dosage: 75 mcg daily
  - Purpose: Hypertension, Hypertension, and Stiffness/Spasticity
  - Jan 31, 2008
- Changed Dosage
  - Dosage: 82 mcg daily
  - Feb 07, 2008
- Changed Dosage
  - Dosage: 88.59 mcg daily
  - Feb 28, 2008
- Changed Dosage
  - Dosage: 138.72 mcg daily
  - Mar 03, 2008
- Changed Dosage
  - Dosage: 218.62 mcg daily
  - Mar 31, 2008
- Changed Dosage
  - Dosage: 275.37 mcg daily
  - Apr 16, 2008
- Changed Dosage
  - Dosage: 350.79 mcg daily
  - Apr 30, 2008
- Changed Dosage
  - Dosage: 425.5 mcg daily
  - May 14, 2008
- Changed Dosage
  - Dosage: 500.3 mcg daily
  - May 29, 2008
- Changed Dosage
  - Dosage: 575.2 mcg daily
  - Jun 11, 2008
- Changed Dosage
  - Dosage: 642.5 mcg daily
  - Jun 24, 2008
- Changed Dosage
  - Dosage: 712.4 mcg daily
  - Jul 08, 2008
- Changed Dosage
  - Dosage: 789.9 mcg daily
  - Jul 22, 2008
- Changed Dosage
  - Dosage: 858.8 mcg daily
  - Aug 04, 2008
- Changed Dosage
  - Dosage: 926.5 mcg daily
  - Aug 19, 2008
- Changed Dosage
  - Dosage: 993.8 mcg daily
  - Sep 12, 2008
- Changed Dosage
  - Dosage: 1057.8 mcg daily
  - Sep 25, 2008
- Changed Dosage
  - Dosage: 1128 mcg daily
  - Oct 08, 2008
- Changed Dosage
  - Dosage: 1204 mcg daily
  - Oct 22, 2008
- Changed Dosage
  - Dosage: 1270.9 mcg daily
  - Nov 03, 2008
- Changed Dosage
  - Dosage: 1339.4 mcg daily
  - Nov 19, 2008
- Changed Dosage
  - Dosage: 1405.2 mcg daily
  - Dec 04, 2008
- Changed Dosage
  - Dosage: 1474 mcg daily
  - Dec 18, 2008
- Changed Dosage
  - Dosage: 1277.5 mcg daily
  - Jan 12, 2009
- Changed Dosage
  - Dosage: 1047.6 mcg daily
  - Feb 05, 2009
- Changed Dosage
  - Dosage: 1002 mcg daily
  - Apr 02, 2009
- Changed Dosage
  - Dosage: 925.8 mcg daily
  - Jul 16, 2009
- Changed Dosage
  - Dosage: 1017.3 mcg daily
  - Oct 14, 2010
- Changed Dosage
  - Dosage: 1121.8 mcg daily
  - Jan 27, 2011
- Changed Dosage
  - Dosage: 897.9 mcg daily
  - Apr 12, 2012
- Changed Dosage
  - Dosage: 720.8 mcg daily
  - Aug 06, 2012
- Changed Dosage
  - Dosage: 720.8 mcg daily
  - Aug 06, 2012
- Stopped
  - Date: Nov 08, 2012
  - Reason: Did not seem to work and Other
  - Nov 08, 2012
- Evaluated
  - View Evaluation
  - Nov 08, 2012
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