“Due Sorelle” – part 2 The Tale of 2 “Sisters” That Spans an Ocean continues… By Anne Bacigalupo Driscoll
Julio Fusco Photographer @all right reserved
In April 2013 I put to print the story of Velia De
Angelis and me and our story as MS warriors. During the subsequent summer, many
changes have occurred for me that yet again connect with Velia.
On
April 12 I had 2 MRIs with a third the following week. These included my brain,
spine and thoracic area. On May 29, I met with my wonderful neurologist, Dr.
Angela Applebee to review the results at great length and discuss next steps. I
continued with my regular routine and added a med to help with walking. As
summer approached and I begin my routine outside including climbing up and down
2 flights of stairs, planting flowers and eventually swimming. I realized that
I didn’t seem to have the stamina and longevity I had a year ago. I worried that
MS was moving into the progressive stage.
On
August 7 I met with Dr Applebee again to discuss my concerns. She started by
saying to me, “let me worry about the MS so you don’t have to”. She assured me
that I wasn’t moving into the next stage but that she wanted to try a different
medication. She felt the daily injections of Copaxone had done their job for
the past 9 years and it was time to try a new med that she felt would help to
keep me where I am. She also prescribed physical therapy; which has been very
helpful.
The
new med is called Tysabri and it is given by infusion once monthly. I am
scheduled for my first infusion on September 18, 2013. It has been proven to be
very successful for MS patients but does have a high risk of developing a
disease called PML which attacks the brain – so MRIs are needed every six
months. They are my nemesis but it must be done!!
So I
sent Velia the news about Tysabri because I knew that SHE was taking the same
med. Once again our lives connected!!! In only her humorous way, she responded
to me:
“I
love to be infected by positive people, funny people. Your doctor is an angel.
I must be honest I did not trust Copaxone drug as a medicine is just fresh
water. I used it at the beginning but after one month it was very hard to find
a place on my body to do injection. 30 injection that my body did not absorb at
all. Full of bruise…was like feeling shot by a gun. Ahhh. Then Rebiff 22 and again Rebiff 44 my
body did not affect the injection but MS was running. Now the Tysabri which is
more dangerous (the risk of PML) finally I found a balance. The most hard
period is just summertime having the heat and work in the kitchen. I think this
is a good news for you to know that with Tysabri is gonna be a monthly meeting
or appointment. Who cares? I am gonna have my 28th infusion next
Wenesday I am ok… I am still alive. Once in the hospital I bring with me the
Sun, a great smile and do many cookies to make everyone happy. I know 4 hours
but we talk, we listen music and we share life stories. I love you Anna my
sister 4ever.”
You
have to take a blood test to see if you are positive for the JC virus which can
lead to PML. As luck would have it both Velia and I are positive. This accounts
for the numerous MRIs. However, the risk is low the first 2 years. After that,
it increases. Velia, being the eternal optimist sent this message on September
7: “No worry I am positive like you and now I am having my 28th
infusion. Now they have discovered two kinds of positive JC after 24 infusions.
Can be dangerous depending by another blood test to send again to Denmark. I
have MRI every 2 months.” She continued on Sept 7, “no worry even you positive
Tysabri is safe 24 infusions. Then research will go ahead.”
I
agree about the research comment – in 2 years I will be 65 (doesn’t seem
possible!) and who knows what will be on the horizon at that point. I’ve
learned it is best to live day by day, always focusing on what I can do and not
what I can’t do. I also have a strong faith that it will work out as it is
meant to be. I’ve been fortunate for so long with this insidious disease. It
takes a strong support system to keep a positive outlook. And for that I am so
grateful for all the friends and family who provide me with love and support. I
would be remiss to not mention our greatest assets:
Both Velia and I have loving partners who care for us
and help us face the day to day life of dealing with MS. Gianluca and Dan are
our strength!
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