As we planned our name change and expanded mission, we realized that we needed to know more about our prospective constituency. In order to inform ourselves about the most common experiences and challenges shared by individuals with spinal cord injury/disease (SCI/D), we commissioned Russell Research to conduct a random survey of this population. Last month, I briefly touched upon some of the survey highlights. This article contains a more detailed report of our findings, which I hope you will find, if nothing else, interesting and enlightening.
Current statistics for the US show that there are approximately 250,000 people with spinal cord injury (SCI), and approximately 400,000 with multiple sclerosis (MS). In addition, there are about 50,000 people who have been diagnosed with other conditions of the spine that make them eligible for membership in United Spinal Association. These include such impairments as post-polio syndrome, Lou Gehrig’s Disease (Amyotrophic Lateral Sclerosis [ALS]) and spina bifida.
• 73% of respondents with SCI stated that they were not aware of resources that could provide them help and information regarding their condition.
• 40% of respondents with MS stated that they had received help through an organization.
• 63% of respondents with MS, and 79% with other conditions, felt that an organization like United Spinal Association could help them. Reasons cited for wanting to join an organization were: to get more information about their condition and how they could improve their lives. Notably, about 10% of respondents felt that the organization could help them help others.
Some of the more acute problems affecting individuals with SCI/D cited were:
Physical pain
• Two-thirds of respondents reported they had experienced moderate pain recently.
• More than half of respondents with SCI indicated they had experienced moderate or severe pain the week prior to the survey interview.
Depression
• Nearly two-thirds of respondents with SCI or MS have been diagnosed with depression.
• About half of respondents with SCI, and about one-third of respondents with MS, indicated they had received treatment for depression.
Employment
Not surprisingly, the employment picture was quite dismal.
• About one-third of respondents with SCI reported that they were currently employed.
• 15% of respondents with MS and post-polio were currently employed.
• About half of the respondents who are unemployed indicated that transportation issues affected their employment status.
• About one-half of respondents with MS or SCI indicated that they lost a job because of their condition.
Miscellaneous
• About 80% of respondents support stem cell research.
• A considerable number of respondents with SCI indicated that they needed to make modifications to their home environment as a result of their disability.
• The vast majority of respondents have a positive outlook on their present life as well as the future; at the same time, they are realistic about the challenges they face. Many have experienced discrimination because of their disability, and many were unsure about their ability to work or raise a family.
• While many of the respondents indicated that they were involved in a variety of social activities, only about one-third reported that they had participated in activities with members of their community.
Additional questions were asked, the answers to which will guide us in developing new programs to meet the needs of our expanding membership. A cursory review certainly indicates that:
• There is a great need for an organization like United Spinal; at the same time, there is a lack of awareness that we are here to help.
• Clearly, we must continue to work on employment, transportation and rehabilitation issues; improvement in these areas will go a long way to helping our members realize their potential.
• There are health care and government program issues that discourage or prevent people with disabilities from becoming full, active members of society. We must try to address these issues.
• Last, but not least, we need to get the word out that we are here to help individuals with SCI and MS become active, contributing members of society. As our motto says, we are here to expand opportunities for veterans and all paralyzed Americans.
I hope that you and your families enjoy the best of the Holiday Season, and that you have a healthy and happy New Year.
Gerard M. Kelly
Executive Director
I was born in Asheville, N.C., a well known “treatment” area for polio victims. My father had polio in or around 1948-50 and I was born in 1947. He was unable to use the hyperbaric chamber (highly claustrophobic) and told he would never walk again. After coming home, he recovered and I “helped” him eat breakfast so Mother wouldn’t be mad. While no othre of 3 children were “diagnosed”, I was, just before the greakSalk vaccine the next year.
My mother also had it as a child and was sent to New York diagnosed as probably a severe muscular dysphasia? but she was recoumperating.
I have a copy of that physicians note and the name polio came along about the same time.
What I want to know are physical histories of other polio victims that survived and are now entering late fifties and early sixties. While I have 3 siblings only my parents and I have had to have our parodid glands removed ON THE SIDE affected by the polio. ONly we had kidney disorders on the pertinent side. We have all been diagnosed with severe blood pressure problems.
While my parents died (in their mid80) and thus didn’t get to benefit from “new” technology, I have had both my renal arteries stented with 90% blockage (and NO history of cholesterol or triglyceride problems).
There are a miriad of other “oddities” that I shared only with my parents but also with the only two other people I’ve met since who had polio. (I don’t think it was a heavily diagnosed disease or maybe just not here in Texas).
Can you suggest a site that supports discussion of specifics from survivors as sometimes I wonder if all these sergeries are worth it.
Yes, my family history has great longivity but they also lived in an age where money was far less equitable and medical care was based upon those Whos who.
In todays world, my husband and have worked extremely hard. Tx Utilities is, as most companies, all but dropping coverage and we can’t aford to live AND spend all these monies chasing quality of life improvents from the medical field that may simply be a post polio syndrone that doesn’t fix anything.
As an example, I’ll leave you with this one: It cost 2 nites in a public hospital ($14,000) just to prove my bp elevates all day and through4 AM to an average of 220/155. After $100,000 for the diagnosis (guess) that my “smaller kidney must have a block (and they were both %90 according to), and the stents, I now have a average nightly ( PM) bp of 180/ 105. WE won’t go into the patches and perscriptions I use just to keep it like that. And we just can’t afford all the MRIs, etc. for the massive variety of oddities I seem to have. Send me to a site please wheere I can speak with others from this shut in (nope can’t see to drive either).
Sincerely, Liz or my Asheville born name Meg.
Liz/Meg,
We are planning to create an on-line community for members of United Spinal Association, which includes people with post-polio. I urge you to join this organization, if you’re not already a member. One of our primary goals is to connect members with members. If you need more information, please e-mail us at action@unitedspinal.org. Or go to our home page at http://www.unitedspinal.org and follow the links to our membership application.
Best wishes. Hope to hear from you soon.
Dear Sir/Madame,
I am from a poor country Nepal, where it is difficult to find information on latest technology miracles, and hence I request you to help me know more.
I am affected by polio and and confined to the wheelchair, with the usual spinal problems. May I know whether stem cell research is likely to help people like me? If so, in my life time(I am 30)?
Kindly advise me.
Dear Sushil,
We follow the stem cell issue very closely, so if you can access this site, you should be able to follow developments. We have a collection of articles on stem cell research here:
http://www.unitedspinal.org/publications/action/category/stem-cell-research/
Our news is updated regularly, so please keep checking back.
I hope you’re safe during this time of strife in your country. What is the situation for people with disabilities in Nepal? Are people conscious of your need for access? Are you able to get around well enough?
Please stay in touch with us. You can send me an e-mail at action@unitedspinal.org.
Best wishes,
Chris Pierson
Managing Editor, Action
I found your site because I heard something about a link between ms and pps and would like to know more.
I had ms at 18 mos and polio just before I was 14.
I also am diabetic and have fms. I cannot get drs to go beyond diabetes and have quit going to drs. Felt much better off meds.