It was one year ago that I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS).
Based on the symptoms and what I now know I have had this condition for several years, but did not know what it was. I am grateful to friends who helped us down the path to reach this diagnosis. Knowing what is the cause of my problems and the limitations it will create has helped us to adjust to this new stage of life and approach it accordingly.
We are fortunate to have a friend who is a surgeon that gave us direction as to what tests and exams I needed to be able to find a diagnosis. He also helped me connect with the neurology department at Gemeli Hospital in Rome, where I was diagnosed.
Another friend who works as a tech doing neurology tests at San Rafael Hospital in Milan arranged for tests and consultations at her department.
I have since been going to Neuromed, which closer than Rome, as there is no viable specialized neurological MS center in our immediate area. I am very happy with my neurologist there and their facilities.
There is currently no cure for PPMS, and as in the name, the expectation is that it will get worse. There are two options for this condition that are helping and hopefully will be able to stop or slow the progression. First, my physical therapist has been a big help with improving my balance and ability to be mobile. Second, I recently started the only drug therapy for PPMS which is designed to stop the progression.
I feel fortunate to be in Italy where some of the leading MS research is being performed. I have affordable access to specialized health facilities all across the country and the processes is much less burdensome than what I see people in the US have to deal with.
The Italian MS Society (AISM) is very active and the volunteers at the chapter in Potenza have been very helpful and a big support with recommendations and finding answers to questions we have had.
Learning that I have this condition is not the end but does mean we will have to make adjustments. I do not plan to sit back and watch the world go by, but to embrace life and cherish doing the things we enjoy while that is still an option.
I trust that God has a plan and I will embrace the life I have now with Valerie's help.
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