Up Close and Personal #3: Joan

I hope you have been enjoying the Up Close and Personal blogs so far. I know that I feel like I know a lot more about my friends now than I did before! One of the things that strikes me from reading all of the answers are some of the similarities between us all in our diagnosis, our symptoms and the things that recommend to our past selves. I will be following up on these in coming blogs. I would love to hear your thoughts on whether you would like more of these types of ‘mini – series’? Let me know in the comments or send me a personal message.

So let’s get to it. I would like to welcome Joan. Now, I have never personally met Joan face to face but I feel like I know her better than I know some people that I have known for a very long time. I ‘met’ Joan through a charity we both volunteer for… and we instantly connected through social media. We have arranged to meet face to face a couple of times but annoying things have gotten in the way and have prevented us from doing so but one day very soon it will happen!! Joan is a blogger herself, writing MS & Me, and she is now an author of a brilliant book for people who are newly diagnosed with MS called ‘huManS’ (you can download your copy of the book here)

When were you given your official diagnosis of Multiple Sclerosis?

I was officially diagnosed in 2010

Did your diagnosis take a long time?

It took a few days in the hospital

What sort of symptoms did you experience before your diagnosis that led you to go and seek medical attention?

I lost power on the right hand side of my body

What tests did you have to get to your diagnosis?

MRI scan and lumbar puncture

What was your initial reaction on hearing the news that you had MS?

Shock and disbelief

What sort of symptoms do you experience on a day to day basis now?

I experience mainly fatigue, mobility issues, cog-fog, incontinence and anxiety.

Which of these would you say are the two symptoms that bothers you the most? 

Fatigue and anxiety

What disease modifying therapy are you on? If you are not on a disease modifying therapy, please can you explain why you have chosen this route to manage your disease.

Gilenya

Have you noticed any side effects from your DMT? What is your experience of your DMT?

I like the fact you take it orally but side effects are hair loss and weight loss

What other things do you do to keep yourself healthy? (Do you follow a particular diet, do exercises, take supplements, meditate, go to any groups etc.)

I go to a local support group, do meditation and yoga and I try and get out as much as possible.

Do you use any disability aids to help you with day to day living? What are they and can you recommend any to people who might be reading this?

No – I don’t walk very far and I drive everywhere now

What is the worst thing about having MS?

The worst thing about having MS is not being able to do the things that I used to be able to do

Is there anything positive that has come from having multiple sclerosis?

I am definitely more compassionate and I see my kids more

What are your top three tips to someone who has just been diagnosed with MS? Or, what would you say to yourself if you could go back to the day when you were just diagnosed?

Take one day at a time

It isn’t your fault

Let people help 

MS has been in the media a lot recently, with stories in soap operas and the news coverage of Selma Blair. Do you think this is a positive thing for people living with MS? Why or why not?

Yes – as long as it is done factually and realistically

Z x

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