My interview guest today is Tamara Fumagalli from Lombardy in Italy. She enjoys life and loves to travel despite her progressive MS. Tamara was diagnosed with multiple sclerosis in 2004, but probably had her first symptoms in 1999.
Her neurologist advised her that teaching might be a good career choice, and she followed that advice. Tamara enjoys traveling around Europe with her family and always does a lot of research in advance to know how well the destinations are compatible with her physical limitations. In addition, Tamara has already written several books, which are available in Italian and sometimes other languages.
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Table of Contents
Introduction of Tamara Fumagalli
Hi I have just turned 45 this July. I married 15 years ago after 10 years of relationship. My daughter Emma was born in August 2010. I am an English teacher. I love animals and got 2 cats at home and since last year I have had 3 donkeys with my father at his field. I love travelling and programming them. I like writing and I have published 3 books so far. I am keen on reading.
Diagnosis and status
When were you diagnosed with multiple sclerosis and what led to it?
In 2004 but have had symptoms since 1999. There was a time when I wasn’t able to walk more than 200 meters so I underwent a MRI (magnetic resonance imagaing).
Did you have any previous symptoms that, in retrospect, were related to multiple sclerosis?
- lack of equilibrium
- vertigo
- numbness in my toes
How were you feeling about the diagnosis and what was it like for your loved ones?
I was relieved because in the end I had an answer for my problems, and I wasn’t dying. Yes, I cannot stop being ill, but I know what to do. My boyfriend married me all the same. my friends are still here, and I have even more! my parents were worried. I was 26.
Did you receive any recommendations for disease-modifying therapies at the beginning, and what was your decision?
I used interferon beta1a I have used it for 8 years. I was happy because I was better.
Have you had a change in therapy and if so, for what reason?
After 8 years they gave me other medications in pills like Tecfidera and others but I had to stop because all of them destroyed my lymphoid cells.
Are you using any symptomatic therapies? If yes, which ones?
I use Fampyra. I do rehabilitation once a week at least I use myorelaxant pills.
How did you adjust your lifestyle after diagnosis?
I learn that my life has changed so I changed ways of doing things accepting that diversity is not wrong but just one way to be. in the end I have achieved more goals after the diagnosis. I got married had a daughter, became a teacher, became a writer, started to travel more, I involved in political choices about accessibility in my municipality…
What do you think about your future and have your professional and private plans changed?
I plan to create a website to advice disabled students about how to travel and what experiences to live in Europe. 3 weeks ago, I was able to fly hanging from an air balloon in Normandy and 4 years ago I crossed St Michael’s Bay in France on a special wheelchair.
What was your rock bottom with multiple sclerosis and how did you fight your way back out?
Not being able to transfer on the toilet and so I began using pads at the beginning I was ashamed of my husband and relatives changing me but then I realized it was just a different way to go to the toilet. …. resilience… always.
How are you currently doing with your MS?
It is secondary progressive and no cure up to now…. I am in wheelchair, and I decided to live my life thanks to the love of my family, friends, colleagues, students and you!
Writing
When did you started writing and what was your motivation
I was 13 and I wanted to read something I really liked so I began writing…. with MS it had grown difficult for me to write but in 2020 I discovered that I can talk and dictate and the phone and computer programs write!
How did you come up with the idea for the advent calendar book for grownups? And what is it about?
I do love Xmas… I start decorating home in early November with pines Holly’s lights and all the German Xmas mood with bratapfel scent and traditional music! my friends always call in in December to enjoy the home and mood but in 2020 in Italy there was lockdown so I thought that if I wasn’t able to have friends at home I could have reached them with my book! so I wrote this story written in 2nd person singular I speak to the reader and it start on 1st December… you wake up and go to the kitchen but in the living room you find something… from that day every morning until the 24th December you find a present and a message… by Your Elf… the gift has to do with Xmas and together with the message they make you wonder about the importance of giving and the relationships.
Where can people find it and in what languages is it available?
It is published in italian “24 doni per Natale”. Sold also on amazon. The publisher hasn’t translated it but I translated it with Friends into English and Spanish and selfpublished them on amazon as “24 gifts for Christmas” and “24 regalos para navidad”.
I wrote my autobiography too “La mia ordinaria vita straordinaria”.
On Instagram you can find me as tamyfuma78 & willwheel.tamy.
If you want to read more about my travelling please have a look at my website, which is so far only available in Italian named https://www.willwheels.com/
Working with multiple sclerosis
How did multiple sclerosis impact your professional life?
I decided to teach.
What kind of support did your employer provided to you during the years related to MS symptoms?
They helped me physically.
Wishes and goals
Have you got a big unfulfilled wish?
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What development would you like to see in the field of multiple sclerosis in the next 5 years?
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Travelling with MS
What do you like about travelling and what type of vacation do you prefer?
Living experiences, visiting places and travelling abroad.
How did you overcome difficulties when travelling with disabilities?
I carefully program everything asking in advance for all needed information.
What tips can you provide to others who are reluctant to go on vacation with MS symptoms?
Always ask about the possibility or if you are not sure. You will be surprised how much you may obtain! Don’t stop believing, imagine and dare!
Wishes and goals
Have you got a big unfulfilled wish?
Yes, to visit Japan.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
A solution for progressive forms, to stop the progression safely an prevent it in the first place.
Quickfire Q&A Session
What was the best advice you ever received?
Become a teacher.
What is your current mantra in life?
There is always a way… find it!
What person would you love to have a fireside chat with and on what topic?
With an expert on travel, about traveling with disabilities.
Complete the sentence: "For me, multiple sclerosis is...."
„…a new strong version of me.“
Which website can you recommend on the topic of MS?
Not a particular one.
Which book or audio book that you have recently read or listened to can you recommend and what is it about?
The white night by Mo Malo. A thriller of the Scandinavian kind. The italian title is „La notte bianca: Un giallo inuit„.
Farewell
Do you have any advice you would give your younger self for the timing of diagnosis?
Don’t think it is the end.
How and where can interested people find you online?
Just search for „Tamara Fumagalli“ or look for „willwheels“ on Google.
Is there anything else you would like to share with the listeners?
Thanks!!!
I find the resilience of Tamara very impressive and a big thank you for being so open and sharing her story and ways to live with the various MS symptoms. I wish Tamara many more great places to travel to, joyful time with her family and good time with the school kids.
See you soon and try to make the best out of your life,
Nele
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