Lifelong Learning Programme

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Personal Experience

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My children is my support.

Alina
Language: English
Country: Lithuania
Typology: patients and relatives
Text:
I am 49 years old, married with 2 kids, a daughter,19, and a son 26, I was diagnosed 11 years ago, For me it started one day I was driving my daughter home from school, out of the blue my vision just went dark, it didn't take long for the diagnoses to be made. Within a year I could no longer work, my profession had been regional director of a chain of health care facilities. My vision was gone in left eye had half vision in right, then just one thing after another, I have been hospitalized 6 maybe 7 times, I've had paralysis from the neck down, and just right sided several times, vertigo, spasms, numbness, pain, speech and swallowing issues, you name it, but each time I would have a flare up, if it was significant enough, I would get a 3-5 day series of steroid infusions, this always seemed to snap me out of it, at least for the most part, I have had steroid infusions 11 times, I know WAY too many, the last one was Jan.18th, also had them Sept 2011, this last flare was brutal, this time though the steroids didn't work, nothing, I've been not so well since, falling, pain, right sided weakness, spasms, vertigo, well today I spoke to my neurologist , I have developed 7 new lesions since Sept. and I was told I should start making plans for future care, he said that he was quite sure that I now had moved into secondary progressive. Even though MS is not a new thing for me, I feel devastated, hopeless, and scared to death, it seems that the somedays, the maybes, the what ifs are not a thing in the future, something kinda unreal I guess, it's now, tommorrow. Real, and I am freaking out! It's I think worse than when I was first diagnosed. I look at life optimistically, but I know that my daughter does not think so. She nurses me and it has the heavy burden. She helps me to manage housework. She is my main adviser how to dress and how to look. She also caring very good atmosphere at home. She has received a strong religious education in St. Povilas&Petrass school when she was small girl. She has benefited from the one-on-one attention she has received from her Kindergarten teacher. My both children are very warm and they are doing a fantastic job-sharing love with others.


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