Jooly's Joint: people with MS supporting each other

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Katrina, The Philippines The Philippines

KatrinaIntroduce yourself!

I am Katrina. I was diagnosed with MS November 1983 aged 23. Initial symptoms were optic neuritis, unexplained itching on my shoulders, paralysis of my lower limbs and general weekness in my upper limbs. I was able to recover within 3 months of taking the maximum allowable oral steroids and mega doses of prayer. I married in 1986 (no children), but was estranged 2 years ago.

I experienced a relapse in 1993 and was unable to fully recuperate. Deficits since the exacerbation are blindness in my right eye and blurriness in the left, tingling in both hands, stiffness in both legs and tightness in my lower torso.

Among the medications given to me during the 17-year period were: Mutabon, Haldol, Baclofen, Tegretol, Solu-Medrol, Gama Globulin, Imuran, Dapsone and Prednison (which I'm currently taking as maintainance). Supplements include Lecithin, Vitamins B, C and E, and calcium. I've also been diagnosed with Necrosed femoral bones as a side-effect of long-term use of steroids (and am in fact overdue for total hip replacement). However, my neurologist is against the recommendation of the orthopedist since the trauma of the surgical procedure might result in further neurological damage thus causing more complications.

Prior to MS, I worked as a Secretary in an advertising agency. I was a volleyball player in college, a hardcourt cheerleader/dancer in High School, a church choir member and youth leader in our community.

In 1984, while in remission, I travelled to the US where I was able to speak to some people with MS through the assistance of the MS Society in Boston, Massachusets. When I got back to the Philippines, I was featured in a half-page article of a daily national broadsheet, mentioning my desire to establish an MS Society in my country. The article drew attantion and thus was born the MS Society of the Philippines, where I'm the Public Relations Officer. The effort enabled us to gather 30 members.

Ten years later (1994), I started up my own tri-media production outfit, Kornerstone Productions, to be able to have a program for the disabled sector. I was Producer and Host of 'K-Forum' (K for 'kapansanan' or 'disability'), a 2-hour weekly broadcast aired on one of my country's top 3 largest networks. This served as an outlet forour gripes and dialogue with government and non-government organizations involved with the sector.

My work and dedication to the sector was recognized by my country's president when I was awarded 'Disabled-Friendly Media Personality 1998'. A 90-minute dramatization of my life's story was aired on national TV in celebration of the annual National Disability Prevention and Rehabilitation (NDPR) week.

The demise of the program in 1998 was due to my separation from my husband. I had to physically uproot myself from the country's capital where the studio was located to join my parents in another island.

I now reside in a coastal city with my retired parents. My family owns a beach resort 20 miles south of this island where I often enjoy my weekends. I assist local disabled people in this province, however only as a consultant on livelihood projects and in doing correspondence. I use a computer with speech synthesis.

When did MS enter your life?

MS arrived when I was 23 ( 17 years ago). I was then working as a secretary in an advertising agency.

What do you now know about MS that you wish you'd known when you were diagnosed?

Lots, lots, lots. MS was hardly known in my country as it was believed to be endemic only in temperate countries and commonly inflicted caucassians. In fact, I was misdiagnosed by 2 neurologists prior to conclusively being diagnosed with MS. This was because there was not much medical information to support MS cases in tropical countries. My having been featured in a national newspaper in February 1986 opened the minds of medical professionals regarding the possibility of MS in the Philippines.

The MS Society of the Philippines being my brainchild forced me to correspond with other international MS organizations. I used to receive regular updates/journals in the earlier years of the disease. These materials helped me a lot. However, Jooly's Joint helped me even more since the information I get from this site is more up-to-date and personal. The discovery of JJ makes me feel more atune with other MSers - since I have no access to printed matter any more (due to optic neuritis) I listen to information via my computer which i is equipped with a voice synthesizer. Almost everything I need to know about MS is available over the Internet. Its interactive presentation is of much help.

Lowest point in your life with MS

When the doctors could not give a name for my disease. When all the syptoms came one after another. I attempted suicide 3 times.

Highest point in your life with MS

While I was in remmission from 1983 to 1993. During this time, I worked as a secretary to the Entertainment Manager in one of my country's 5-star hotels where I got to meet the best artists/singers of the Philippines; travelled to the US East and West coasts; enrolled in Bible School; involved myself in prison ministry where I would lead praise and worship singing during fellowships; get married and be a home maker; have a business of my own as proprietress of a beauty salon on board a passenger vessel that travelled to key cities of my country's 7,100 islands.

In 1993, when I had a serious exacerbation, I explored the possibility of reaching out not only to MSers but also to the rest of the disabled sector. I ventured into radio production of a niche program that catered to the needs and interests of people with disabilities. This venture enabled me to expand my circle of friends and made me discover I had a talent for broadcasting.

What do people with MS need to help them enjoy fulfilling lives?

First is to know that our creator does not make garbage. That each of us have a purpose or mission in this planet. That we are all masterpieces of God's creation. That we should count our blessings - there are other people worse off than ourselves. That we should thank the Lord at all times, forgetting the 'What could have beens' and focus on 'What shall I do?'. Live each day as it comes - one day at a time. You don't have to understand everything. Be happy, content and always smile.

When and how did you discover Jooly's Joint?

My sister was surfing and she asked me if I wanted to join, so I agreed.

What keeps you coming back to Jooly's Joint?

The camaraderie, openness, company, laughter, information, updates, friendship, understanding, discussions, tips, sharing, people, insights, everything!

What are your ambitions?

I guess I've already carved a legacy and made a mark in my country's broadcast industry by pioneering a program that exclusively catered to the disabled sector and by being recognized by no less than our president. Now that I've retired from service, I'd like to learn more about this computer and perhaps be a scriptwriter, novelist, newspaper contributor or anything which I can do with this keyboard.

What message would you give to newly diagnosed people?

That they are not alone. That there are millions of others with the same disease. That they'll meet them with just the stroke of their fingers on the keyboard. That they're all in Joolys Joint. So, come and join the club!

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