Lewy Body Disease

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 Lewy Body Disease?

Dementia with Lewy bodies is characterized by cognitive decline, recurrent visual hallucinations, postural instability, gait difficulties, masked facial expression, rapid eye movement sleep behavioral disorder, and antipsychotic sensitivity.

Common symptoms reported by people with Lewy Body Disease

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 Lewy Body Disease

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

(Sinemet)
Type
Prescription Drug
How many have tried
2
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Aricept)
Type
Prescription Drug
How many have tried
2
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Exelon Patch)
Type
Prescription Drug
How many have tried
2
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
1
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

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

(Ativan)
Type
Prescription Drug
How many have tried
1
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Nature's Bounty Melatonin)
Type
Supplement
How many have tried
1
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Seroquel)
Type
Prescription Drug
How many have tried
1
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Walking cane/rubber tip)
Type
Equipment
How many have tried
1
Tried for
Lewy Body Disease (1)

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

Compare treatments taken by people with Lewy Body Disease

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)

(Sinemet)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Aricept)
Perceived effectiveness
for Lewy Body Disease (1 evaluation)
Side effects
Diarrhea Dry heaves 2 more
How many evaluations
1
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Exelon Patch)
Perceived effectiveness
for Lewy Body Disease (1 evaluation)
Side effects
How many evaluations
2
Tried for
Lewy Body Disease (2)
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Lewy Body Disease (1)
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
Lewy Body Disease (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
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Nature's Bounty Melatonin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Seroquel)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Lewy Body Disease (1)
Check to add this treatment to your profile
Treatment name(s)

(Walking cane/rubber tip)
Perceived effectiveness
No evaluations
Side effects
No evaluations
How many evaluations
0
Tried for
Lewy Body Disease (1)

Data from patients with Lewy Body Disease, 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 Lewy Body Disease on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 0
30s 0
40s 1
50s 5
60s 6
70+ 22

Gender

Distribution of females vs. males

29% Females
71% Males
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 0
20-29 years 0
30-39 years 0
40-49 years 3
50-59 years 5
60-69 years 5
70+ years 4

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 18
Not Diagnosed 3

These charts show data from Lewy Body Disease patients who have completed their condition history
Last updated: