Jun 18, 2022 • 5M

N is for the Newly Diagnosed

A Letter for You

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Jane Gould
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Today, I’m sharing a letter for someone Newly Diagnosed. I would love if you made a note of it, and shared with anyone it might help.

Thank you,

Jane

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Dear Newly Diagnosed,

I’m sorry you’ve found yourself on the MS train. I’m guessing that to have arrived here you’ve already experienced some pretty scary stuff - blindness or blurred vision, numbness or weakness in your limbs, or perhaps trouble with your memory, speech or swallowing. And you’ve probably had a bunch of MRIs, tests, and doctors and specialists visits. I want you to know you’ve got this, and you’re not alone.

You might be a little afraid to speak to me about it because I’m in a wheelchair, and you don’t want that to happen to you. Trust me, I understand. What you need to remember is that when I was diagnosed twenty years ago there were hardly any treatments for MS, now there are lots. Also, it’s very hard to predict how and when your MS will progress. You might get through this episode and be completely fine the rest of your life. That’s true for lots of people.

As someone who’s been on the ride for a while though, I’d like to share what I’ve picked up along the way. I can’t offer you a cure, but I can offer advice and suggestions that might help you.

Your body will become your focus as it is the center of your challenge, so, if you haven’t already been treating it with care, start now. Drink more water, exercise regularly, and get plenty of sleep. Yoga is a good choice for exercise as the possibilities of going hard, taking it easy, doing it when you’re tired are endless. A disease of the central nervous system like MS requires lots of rest and relaxation. If you can afford a massage, do that, and enjoy warm baths and showers, listen to music or the birds, read or nap. Do anything peaceful when you can. Start on an anti-inflammatory diet or MS specialized diet and commit to doing it 85% of the time (no need to go nuts and try for 95%). There are several out there, do your best.

Now, you probably already know there’s no known cause, and no cure for MS. The no cure is the bitch. There are disease modifying therapies though. These are referred to as ‘DMTs’ and are any of the MS medicines. The good news for you being diagnosed now, compared with when I was, is that there are more than 20 available, rather than three. By the time the big wave of medicines were available, I’d already had it for too long to take them. So, work with your neurologist and start on one as soon as you can. If you get on well with it, keep going, but if you get horrid side-effects, talk to your neurologist and try a different one. (Also, if you’re in the US and get to choose your neurologist, choose an MS specialist at an MS clinic rather than a general one. If that’s not an option due to distance, don’t worry, but you might need to do a bit more of your own research and advocate harder for treatments.)

Something I promise you want to do is learn to meditate. There are tons of different types - guided, breath, loving kindness, chakra. If you haven’t got a practice, read-up, and dig around. Look up local meditation centers or yoga studios. Develop a practice that sticks. It will help you deal with this new chapter of your life. You don’t need to sit tied-up like a pretzel, but learn how to be quiet, and do it. Meditation will help you stay present and not worry. You can, of course add other wellness therapies like reiki, acupuncture, qigong, and aromatherapy, but don’t rely on them as a cure.

On the cure front, one thing you’ll come across are people’s accounts of how they ‘cured’ their MS. This is simply not true. If they had, the MS community (patients & their loved ones, neurologists, scientists, media) would be all over that in a second. What’s happened is the path of their MS slowed so much it may seem to have stopped, but the truth is it was going to do that anyway. Their methods may have helped slow the progression, but that was the nature of their journey. They’ve gotten all excited and attributed it to the diet / meditation / full moon dance they’ve been doing. This touting their ‘cure’ is misleading. The thing about MS is that no-one is able to predict how it’s going to unfold which is why you need to do everything you can to keep on top of it and slow it down.

As I just said, no-one can predict how your MS will progress. You might only have one episode - or not. We don’t know. So, take care of you. Get to know your body, be kind to it, and know that I, and everyone in the MS world are rooting for you. And, if you want to chat, I’m here.

Love,

Jane

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