Multiple Sclerosis – a 2008 Social Impact Study

Section 1, General Background Information

Section 1 establishes the fundamental facts about your interaction with MS, and gathers information about your current life situation.

1.01 Had MS for an average of 17.5 years.
1.02 Was an average 32 years of age when I had my first MS incident.
1.03 Am now 26-45 21% 46-60 61% 61-75 18%
1.04 N/A
1.05 93% have access to the Internet.
1.06 Partner/spouse is very supportive 46% supportive 11% not very supportive 7% no partner/spouse 36%
1.07 Diagnosed by multiple exacerbations 32% spinal tap 17% MRI 47% family history 3%
1.08 When diagnosed with MS was told had relapsing /remitting 69% primary progressive 12% unsure 19%
1.09 Currently diagnosed as relapsing/remitting 33% primary progressive 7% secondary progressive 52% unsure 7%
1.10 26% are using drug inhibitors to reduce the frequency of exacerbations.
1.11 Require no 14% some 57% a fair amount of 29% assistance with daily living to remain independent.
1.12 Primary caregiver is partner 48% parent 8% sibling 4% friends 4% hired care worker 24% other 12%
1.13 71% use and 29% do not use mobility aids.
1.14 MS has had an effect on vision 6% speech 0% balance 18% ability to walk 33% memory 0% energy level 30% other 12%
1.15 The greatest problem of those identified above (question 1.14) is walking 33% energy level 30% balance 18%
1.16 4% have while 96% do not have other family members with MS.
1.17 The other members of family with MS are cousins.
1.18 MS has had a very large impact 61% some impact 36% no impact 3% on life goals.
1.19 MS has had a very large impact 64% some impact 25% no impact 11% on ability to earn a living.
1.20 MS has had a very large impact 43% some impact 46% no impact 11% on relationship with partner /spouse or potential partners.
1.21 MS has had a very large impact 18% some impact 64% no impact 18% on relationships with friends and family.
1.22 MS has had a very large impact 57% some impact 14% no impact 29% on choosing a home.
1.23 MS has had a very large impact 46% some impact 43% no impact 11% on social life.
1.24 MS has had a very large impact 74% some impact 22% no impact 4% on participation in sports.
1.25 MS has had a very large impact 64% some impact 28% no impact 7% on long-term financial situation.
1.26 The community is not very supportive 16% somewhat supportive 40% very supportive 44% of people with MS.
1.27 Not 32% somewhat 43% heavily 25% involved with local MS Society.
1.28 Non-MS related physical health is poorer 32% about the same 36% better 32% now than before diagnosis.
1.29 Believe mental health is poorer 26% about the same 48% better 26% now than it was before diagnosis.

Section 2, Relationships

Section 2 examines the impact a diagnosis of MS has had on life relationships over time. As a result many of these questions gather information about past experiences rather than current life situations.

2.01 When diagnosed I was married 61% in a long-term relationship 22% single 17%.
2.02 I told my partner 94% family 90% friends 60% co-workers 29% employer 38% about the diagnosis immediately.
2.03 I told my partner 6% family 10% friends 14% co-workers 48% employer 36% about the diagnosis only when it was obvious that I was having health problems.
2.04 The response from my partner was very supportive 58% supportive 17% not very supportive 25%
2.05 The response from my family was very supportive 59% supportive 22% not very supportive 20%
2.06 N/A
2.07 My children understood and accepted 72% angrily accepted 20% refused to accept 8% the change in my life.
2.08 Change in your children’s attitudes between diagnosis and the current time? yes 23% no 68% some 9%
2.09 Other children in my extended family understood and accepted 94% refused to accept 6% the change in my life.
2.10 The age of the child plays no 32% some 44% a major 24% part in their willingness to accept my life changes.
2.11 The younger 50% older 50% children are more accepting.
2.12 The response from my closest friends was very supportive 81% somewhat supportive 12% not very supportive 7%
2.13 The response from my circle of friends was very supportive 49% somewhat supportive 19% not very supportive 10% mixed 22%
2.14 The response from my co-workers was very supportive 42% somewhat supportive 26% not very supportive 32%
2.15 The response from my employer was very supportive 35% somewhat supportive 42% not very supportive 23%
2.16 Over time the disease progressed 86% remained benign 14%
2.17 Over time my relationship changed with my partner 42% family 27% friends 31% co-workers 24% employer 19%
2.18 Partner – these changes were directly 56% indirectly 37% not 7% related to the fact that I have MS.
2.19 Partner – these changes had a positive 37% neutral 19% negative 44% impact on our relationship.
2.20 Family – these changes were directly 59% indirectly 22% not 19% related to the fact that I have MS.
2.21 Friends – these changes with my closest friends were directly 37% indirectly 33% not 30% related to the fact that I have MS.
2.22 Friends – these changes with my broader circle of friends were directly 45% indirectly 31% not 24% related to the fact that I have MS.
2.23 Co-workers – these changes were directly 56% indirectly 33% not 11% related to the fact that I have MS.
2.24 Employer – these changes were directly 65% indirectly 25% not 10% related to the fact that I have MS.
2.25 Was MS a contributing factor in the ending of a marriage or long term relationship? Yes 33% no 52% unsure 15%
2.26 Have you lost friends because they have been unable to accept your new reality as a person with MS? yes 29% no 50%_ unsure 21%
2.27 Losing friends because they cannot accept my new reality as a person with MS is very sad 31% no big deal, they were obviously not friends you can count on 52% understandable 17%.
2.28 Have you made new friends because of your new reality as a person with MS? yes 70% no 20% unsure 10%
2.29 To develop new friendships I rely on internet 43% MS Society 41% existing network of friends 67% social clubs 19% family 24% church 22% community 52% I keep to myself 26%
2.30 Apart from the physical limitations caused by MS, having MS has a negative 20% neutral 47% positive 33% impact on my ability to make new friends.
2.31 I do not know 34% know 19% know well 47% someone with a good understanding of MS related issues who I can talk to.
When I need someone to talk to about MS issues I talk to my partner 48% parent 19% sibling 29% friend 43% MS Society 23% other 14%

Section 3 Employment

Section 3 examines the impact a diagnosis of MS has had on the ability to earn a living. Many people experience a change in employment circumstances that is directly related to disease progression, and this survey attempts to capture those changes over time to build a causal relationship between having MS and being able to earn a living.

Before MS

3.01 Employed by a large business 50% employed by a small business 25% self employed 8% a student 8% unemployed 8% .
3.02 Worked in a union 22% non-union 78% environment.
3.03 Work was full-time 100%.
3.04 Paid a salary 50% hourly wage 50%
3.05 Highest educational level was some high school 8% high school 8% college 42% university 42% .
3.06 42% had a trade certification or professional accreditation that was important to my employment.
3.07 Work required extended hours 58% shift work 8% demanding working conditions 25% significant travel 8%
3.08 67% of employers offered a benefit plan that covered dental 100% prescriptions 100% life insurance 75% disability insurance 75%; 33% had no benefit plan_
3.09 Working in this environment for 1 – 5 22% 6 – 10 22% >16 56% years

At Time of Diagnosis

3.10 Told I had relapsing/remitting 58% primary progressive 25% unsure 17%
3.11 The medical advice I received can best be described by the following statement: 36% Go on with life and see what happens, ignore the disease and don’t worry 18% Get you affairs in order and prepare for the worst 45% Get some help from a therapist and plan your life around the disease
3.12 At the time I was having no trouble 36% some trouble 45% a great deal of trouble 18% doing my job.
3.13 The difficulty was vision 42% balance 50% strength 25% stamina 50% memory 33% thinking 50% other issues 17%
3.14 44% told and 56% did not tell their employer about the diagnosis immediately.
3.15 At the time of diagnosis I thought that my employer would be very supportive 38% somewhat supportive 13% unsupportive 37% actively hostile 12% about me having MS.

When Diagnosis Disclosed

3.16 When I finally told my employer about the diagnosis I found my expectations (3.15 above) were correct 88% incorrect 12%
3.17 Average of 7 years employment before diagnosis.
3.18 Told employer about the diagnosis when health problems interfered with my ability to do my job properly 57% when my impairment became obvious 43%
3.19 Response from employer was very supportive 33% somewhat supportive 22% not very supportive 44%
3.20 Changes needed were fewer hours 9% modified working conditions 36% reduced physical exertion 9% opportunity to rest 18% other 27%
3.21 Employer encouraged me to find another job 13% modified my work-load to accommodate my needs 25% did nothing 63%
3.22 Disclosure of the diagnosis had no immediate impact 40% some immediate impact 10% a large immediate impact 50% on earnings.
3.23 I continued as before 30% thought about the possible impact on my work 20% revised my job goals 50% in preparation for the possible progression of the disease.
3.24 I did not 30% did voluntarily change my job and work environment once 10% more than once 60% in anticipation of the likely progression of the disease
3.25 This change had no 25% some 25% a large 50% impact on my ability to qualify for long-term disability benefits.

Today

3.26 It has been 6 to 31, avg 15 years since diagnosis.
3.27 Currently diagnosed as relapsing/remitting 33% primary progressive 8% secondary progressive 42% unsure 17%
3.28 Current employment status is retired due to age 9% retired due to disability 73% fully active and employed 9% employed at reduced accommodation level 9%
3.29 Select the response that best describes your post-disclosure experience.
33% Employer worked closely with me to accommodate my needs and secure my future
11% My employer tried to force me out
11% Employer did force me to leave my job with a disability pension package 44% Employer did force me to leave my job without a disability pension package
3.30 If I had to go through the diagnosis and disclosure process again I would do the same thing that I did 75% approach it a little differently 8% do it very differently 17%

Financial Security

3.31 I am no longer employed 82% still employed 18% and my earnings are 100% 30% two/thirds 34% half 36% the rate I would have earned if I did not have MS.
3.32 I am retired on company disability pension 31% government disability pension 69%, with only 8% of respondents collecting both pensions.
3.33 It was extremely difficult 30% difficult 10% not difficult 60% to get my disability pension.
3.34 N/A
3.35 N/A
3.36 I depend on my savings 33% family 50% friends 33% company disability pension 41% government disability pension 75% to survive.
3.37 Assistance with the cost of medical devices and mobility aids comes from company health insurance 25% government 58% family 25% friends 17% service clubs 25% MS Society 67% charitable organizations 17% other 8%
3.38 I rely on my community health system or government agency 31% private provider that I pay 15% family 8% friends 8% no-one 38% for assistance with personal care.
3.39 I rely on my community health system or government agency 8% family 8% friends 17% myself 67% to provide adequate housing.
3.40 I rely on my community health system or government agency 11% family 11% friends 22% other 6% myself 50% for transportation services.
3.41 I rely on my community health system or government agency 45% private provider that I pay 36% other 9% myself 9% for prescription and dental costs.
3.42 My disability pension income is sufficient 33% barely adequate 33% inadequate 33% to cover my basic daily living costs.
3.43 N/A

Looking Ahead

3.44 From a financial perspective my future will likely be unchanged 27% worsen 73%.
3.45 My disability pension plan claws back all 25% all over a fixed level 75% of income generated from employment
3.4 Generating more income is a priority 10% would be nice 60% not worth the effort 30%

Section 4 Housing

This section quantifies the extent of social disruption and angst caused to people with MS as they encounter increasingly challenging situations at the most basic level of our existence, where we live. Many of these questions gather information about past experiences and expectations for the future rather than just focusing on current life situations.

Mobility and Your Home

4.01 I currently have no 4% very little 40% quite a bit of 32% a lot of 24% trouble with mobility.
4.02 In the event I experience greater mobility impairment in future my home will be adequate without significant modification 42% can be adequately modified at reasonable cost 25% cannot be modified at reasonable cost and I will have to move 33%.
4.03 If the mobility impairment ultimately results in full-time use of a wheelchair my home will be adequate without significant modification 48% can be adequately modified at reasonable cost 22% cannot be modified at reasonable cost and I will have to move 30%.
4.04 The entrance to my home has no 32% 1-3 36% 4 or more 32% steps that I need to negotiate to get in the front door.
4.05 40% have another entrance that has fewer steps 20% a porch lift 10% a ramp 70%.
4.06 My home is all on one level 67% multi-level 33% and my activities are restricted to one level 8% restricted to some extent 38% unrestricted, I can go anywhere 54%.
4.07 In my home I access other levels using the stairs 57% a chair lift 36% an elevator 8%.
4.08 My home is equipped with hand rails 48% threshold ramps 38% grab bars 71% transfer poles 29% lifts 33% wherever necessary for our needs.
4.09 The kitchen has been modified 20% can be modified 60% was designed 20% to accommodate mobility issues.
4.10 One bathroom has been modified 55% can be modified 30% was designed 15% to accommodate mobility issues.
4.11 Interior doors in my home provide 26” 10% 28” 24% 30” 29% 32” 38% clearance.
4.12 My home requires no 12% some 79% a great deal of 8% exterior maintenance.
4.13 At present I do the work myself 26% hire it done 52% rely on friends and family 22% to do the exterior maintenance.
4.14 My home is under 5 30% 6 – 20 17% 21 -50 22% over 51 30% years old.
4.15 Visitors with moderate mobility impairment (canes, crutches or walker) can easily 61% can, but with assistance 39% get into my home.
4.16 Visitors with moderate mobility impairment (canes, crutches or walker) can easily 74% can, but with assistance 26% get into my bathroom.
4.17 Visitors with significant mobility impairment (in wheelchair) can easily 50% can, but with assistance 25% cannot 25% get into my home.
4.18 Visitors with significant mobility impairment (in wheelchair) can easily 46% can, but with assistance 25% cannot 29% get into my bathroom.

Financial Considerations

4.19 Renovations to accommodate mobility impairment are costly, I cannot afford any 39% can afford modest 55% can afford extensive 6% renovations to remain in my home.

4.20 I do not have the funds 29% have limited resources 47% can afford 24% to move to a suitable accessible home.