This document summarizes survey results from 25 people with multiple sclerosis (MS) in Trinidad. It finds evidence both of suffering and resilience among those living with MS. On suffering, it notes that over 60% had symptoms for 5-11 years before diagnosis, that fatigue, pain, and imbalance were common difficult symptoms, and that around 60% also had non-mobility health problems requiring frequent hospitalization. However, it also finds evidence of resilience, with over 60% able to walk independently, over 75% able to work outside the home, over 60% financially independent, low need for caregivers as most can take care of personal needs, and good psychological comfort with their condition.

1. RESILIENCE THROUGH
SUFFERING
Dr. Daphne Phillips
MULTIPLE SCLEROSIS SUPPORT FOUNDATION

2.  There are as many under 30 as over 60
 The middle age group represents 60 % of the population
AGE
AGE Numbers
> 30 years 5
31 to 60 years 15
61 years and over 5
TOTAL 20

3.  Females outnumber males in a ratio of 3 to 1
 MS patients are more likely to be female
GENDER
Gender Numbers
Female 19
Male 6
TOTAL 25

4.  Africans predominate in this population, unlike its
representation in the national population and in
international studies
ETHNICITY
Ethnic Group Numbers
African 11
East Indian 3
Mixed 9
Caucasian 1
No answer 1
TOTAL 25

5.  60% of the population live with MS for over 10 years
 20% live with MS for over 20 years
MS DIAGNOSIS
How Long Diagnosed Numbers
> 7 years 11
8 to 10 years 5
10 to 14 years 4
15 and over 4
Never confirmed 1
TOTAL 25

6.  Efficacy of medical diagnosis in MS seems low
HOW LONG SYMPTOMS BEFORE MS
DIAGNOSIS
Years Before Diagnosed Numbers
At Diagnosis 10
10 months to 4 years 5
5 to 7 years 4
11 years 1
22 to 29 years 2
Never confirmed 1
TOTAL 25

7.  Respondents allowed to name more than one
 There is a fairly high degree of suffering among MS people
DIFFICULT SYMPTOMS
Symptoms Numbers
Optic Neuritis
Fatigue
RT. Leg Weakness
Spasms, Tingling
Irregularity
LT. arm Immobility
Constipation
Stiffness in Chest
Worsening Eye Sight
Pain 12
Disability 7
Imbalance 12
Other - Numbness 5

8.  MS persons are largely aware of their MS type
 The distribution of MS types in Trinidad is similar to that
internationally
TYPE OF MS
Type of MS Numbers
Primary Progressive 5
Relapsing Remitting 17
Unsure 3
TOTAL 25

9.  The majority of MS people attempt to walk on their own
MOBILITY STATUS
Level of Assistance Needed Numbers
None 12 (some with an aid)
Partial 6
Full 6
No answer 1
TOTAL 25

10.  Over 60% of MS people can walk independently
ABILITY TO WALK INDEPENDENTLY
Can Walk Numbers
Yes 16
No 8
No answer 1
TOTAL 25

11.  Roughly 60% of MS people also have non-mobility health
problems
NON MOBILITY PROBLEMS
Problems Numbers
Pain (in leg) 1
Loss of Sight/Vision 7
Headaches 2
Bowel and Bladder 6
No problems 9
TOTAL 25

12. NEUROLOGICAL VISITS
Frequency of Visits Numbers
For symptoms 2
2 times weekly 1
Monthly 1
3 monthly 9
6 monthly 7
3 to 6 months 1
No longer visits 2
No answer 2
TOTAL 25

13.  Roughly 60% of MS people were ever hospitalized
HOW OFTEN HOSPITALISED
Times Hospitalized Numbers
Never 8
1 to 3 times 5
4 to 7 times 6
Frequently 3
No answer 3
TOTAL 25

14.  Over 75 % of MS persons are self –supportive
CAN WORK OUTSIDE HOME
Can Work Numbers
Yes 16
No 6
No Longer 1
At School 2
TOTAL 25

15.  Over 60% are financially independent
FINANCIAL INDEPENDENCE
Financial Independence Numbers
Yes 13
Yes (disability grant/ husband/
family)
6
No 4
At School 1
No answer 1
TOTAL 25

16.  MS persons largely depend on others for transportation
CAN DRIVE SELF
Drive Self Numbers
Yes 4
Yes, but afraid 3
No 16
Not Applicable 2
TOTAL 25

17.  The need for care-givers among MS people is low
TAKING CARE OF PERSONAL NEEDS
Can Take Care of Personal
Needs
Numbers
Yes 17
Sometimes / Partly 4
No 3
No answer 1
TOTAL 25

18.  The Psychological Status of MS people appears to be quite
good
COMFORT WITH SELF
Comfort with Self Numbers
Embarrassed 1
Ashamed 0
Not Happy 1
Normal 13
Very Comfortable 7
In Good Spirits 1
Grateful 1
Not Applicable 1
TOTAL 25

19. Evidence of Suffering
 How long symptoms before diagnosis
 Difficult symptoms
 Non- mobility health problems
 Often hospitalized
SUMMARY

20. Evidence of Resilience
 Mobility status
 Ability to walk independently
 Can work outside home
 Financial independence
 Can take care of personal needs
 Comfortable with self
SUMMARY