Primary Progressive Aphasia

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is Primary Progressive Aphasia?

Primary Progressive Aphasia (PPA) is a type of dementia that may occur in individuals under the age of 65, it is a deficit of language functions. Due to brain cell degeneration, PPA affects speaking, comprehension of conversational speech, reading and writing.

Common symptoms reported by people with Primary Progressive Aphasia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, insomnia, fatigue, and pain) regardless of condition.
Last updated:

Treatments taken by people with Primary Progressive Aphasia

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
1
Tried for
Anxious mood (1)
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
1
Tried for
Pain (1)
Check to add this treatment to your profile
Treatment name(s)
Type
Other
How many have tried
1
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Wellbutrin XL)
Type
Prescription Drug
How many have tried
1
Tried for
Depressed mood (1)
Check to add this treatment to your profile
Treatment name(s)
Type
Other
How many have tried
1
Tried for
Anxious mood (1) Depressed mood (1)
3 more
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Type
Supplement
How many have tried
1
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Lexapro)
Type
Prescription Drug
How many have tried
1
Tried for
Anxious mood (1) Depressed mood (1)
Check to add this treatment to your profile
Treatment name(s)

(Ativan)
Type
Prescription Drug
How many have tried
1
Tried for
Anxious mood (1)
Check to add this treatment to your profile
Treatment name(s)
Type
Supplement
How many have tried
1
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Type
Prescription Drug
How many have tried
1
Tried for
Anxious mood (1)

Data from patients with Primary Progressive Aphasia, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments taken by people with Primary Progressive Aphasia

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
How many evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Xanax)
Perceived effectiveness
for Anxious mood (1 evaluation)
Side effects
How many evaluations
1
Tried for
Anxious mood (1)
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Weight gain
How many evaluations
1
Tried for
Pain (1)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Fatigue (1 evaluation)
Side effects
How many evaluations
1
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Wellbutrin XL)
Perceived effectiveness
for Depressed mood (1 evaluation)
Side effects
How many evaluations
1
Tried for
Depressed mood (1)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
for Anxious mood (1 evaluation)
Side effects
Optimism
How many evaluations
1
Tried for
Anxious mood (1) Depressed mood (1)
3 more
Check to add this treatment to your profile
Treatment name(s)

(CoQ10 Soft Gels)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Lexapro)
Perceived effectiveness
for Anxious mood (3 evaluations)
Side effects
Dilated pupil(s)
How many evaluations
3
Tried for
Anxious mood (1) Depressed mood (1)
Check to add this treatment to your profile
Treatment name(s)

(Ativan)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Anxious mood (1)
Check to add this treatment to your profile
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Perceived effectiveness
for Anxious mood (1 evaluation)
Side effects
Weight loss
How many evaluations
1
Tried for
Anxious mood (1)

Data from patients with Primary Progressive Aphasia, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Who has Primary Progressive Aphasia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 4
30s 1
40s 10
50s 7
60s 9
70+ 7

Sex

Distribution of sex

37% Female
63% Male
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 0
30-39 years 3
40-49 years 1
50-59 years 2
60-69 years 2
70+ years 2

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 15
Not Diagnosed 5

These charts show data from Primary Progressive Aphasia patients who have completed their condition history
Last updated: