Looking for shared wisdom...

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Looking for shared wisdom...

Postby hlm286 » Wed Jul 01, 2009 7:32 am

I'm newly diagnosed, and as I'm sure you all know, it's alot to take in. There's so much information out there but a lot of it is still vague or different from the other. I want to know more about MS, mostly how to better cope, help your body recover from an attack, how to deal with the symptoms (ex. what to avoid doing, what to do, etc.), how to make your body healthier and stronger, and just any wisdom that you may have about living with MS. I figure the best people to turn to for accurate educated advice might just be the people who live with it first hand, and I'm sure if it's been in your life for awhile, you researched alot and learned alot of information that would be very helpful to a newbie like me. I would greatly appreciate any kind of shared advice! Even if it's just what works for you. Thank you!
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Postby Mamacita » Sun Aug 09, 2009 5:30 am

1. Getting someone else to do the research...
If you have a partner who is truly competent, committed, and willing, you might consider making them the primary MS researcher. Even though my husband--who has MS-- is super smart and well accomplished, he sometimes has a hard time sorting through MS research. It takes a toll emotionally, and he is somehow less able to sort out the real from the quackery (and that's tough with MS, regardless of how close you are to it). He also finds it a little frightening to read about all the possible problems he hasn't experienced yet. Doing the research for us helps me familiarize myself with what might be coming down the pike for us, without scaring the pants off my husband in the meantime. It seems to have worked well for us.

2. Find a way to have a positive and persevering attitude.
A lot of people with MS get sucked into the drama of it, which is easy because it is a naturally dramatic disease. Find a way to be happy. Personally I recommend reading _The Art of Happiness_ by Howard Cutler and the Dalai Lama. It's written for westerners, not for Buddhists. It has definitely helped to keep my husband and me focused on happiness and compassion.

3. Realize you're going to be OK
Your life may not play out exactly the way you've envisioned, but you'll be OK. If you've been a generally happy person thus far in your life, you'll find a way to be a generally happy person for the rest of your life.

4. Realize that MS can be quite serious
Although MS doesn't usually affect life span, some pretty serious stuff can come up. When my husband was first diagnosed, we thought the worst thing that could happen was that he'd be in a wheel chiar. That is not the worst thing that could happen. Take it seriously, and do what you can to make yourself healthy.

5. Check out the diet stuff with an open mind. We initially wrote it off as the ramblings of nuts...afterall, our doctors hadn't mentioned anything about it. But we're believers, now. Most of the MS diets out there rest on a foundation of Dr. Swank's diet. And his book, The Multiple Sclerosis Diet Book, is a good one to start with. It lays out a lot of the basic information in a way that isn't quite so overwhelming as the internet sites. After you've read that (or at least the first few chapters of that), you can move onto the Best Bet Diet (see the nutrition recommendations section on www.direct-ms.org) or whathaveyou.

6. Get checked for vitamin deficiencies...at the very least for a b12 deficiency or a D deficiency. B12 deficiencies show symptoms very similar to MS symptoms, and some people with MS have a hard time metabolizing b12. And D is also very linked to MS. For some research on these, you can check out www.direct-MS.org, among other sites.

7. If you can, participate in an exercise that increases balance, such as tai chi. It doesn't have to be something where you sweat a lot, but something to help increase your sense of balance is good. Then, if you're suddenly dealing with leg strength issues, for example, you'll be better prepared to handle them.

8. Last, but not least...AVOID STRESS. Learn how to deal with stress, even if you have to actually take a class on it. Learn how to work out differences with family members and friends without screaming or fuming. Learn how to say "No" to your boss, to your friends, and to store clerks (hopefully, in a nice way).

The tree with strong roots survives the storm. If you're already depressed, it's hard to find the silver lining. Find the silver lining first. If you're already weak, it's hard to build muscle and grow strong...do it first.

So this was pretty rambling, but these are my thoughts. I hope they help.
Last edited by Mamacita on Sun Aug 09, 2009 10:00 am, edited 1 time in total.
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Postby peekaboo » Sun Aug 09, 2009 7:35 am

hlm & mamcitia -

This is very good advice and very organized.
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Postby scoobyjude » Sun Aug 09, 2009 2:28 pm

What Mamacita wrote is everything that I wish I had known when I was first diagnosed. The only thing that I would add is don't sweat the small stuff in life and with symptoms. You will know if a symptom you are having is significant because it will be undeniable and will last for longer that 24 hours. Don't freak out about every little thing because most of the time they end up being nothing. I think the life stuff falls under the stress heading. Your life will never be the same but that doesn't mean it can't be a good life.

P.S. Mamacita, I am totally buying that book ASAP cause I need help
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Postby Wonderfulworld » Mon Aug 10, 2009 2:31 pm

I think the advice above is excellent. I don't currently do the diet thing but I try to exercise regularly, avoid excessive stress, etc.

One thing I would add is that you can't rush the stage of acceptance of MS (one of the steps for grief) but that it is so much easier when you learn to be kinder to yourself. It is only in the last year, 10 years after diagnosis, that I have learned to go easy on myself. For example, if you don't take the heat well, don't go on a holiday in blinding heat just because you know your husband loves it! - learn to plan with MS in mind. I thought it was "giving in" to MS, but it's not. It's making it easier on yourself.
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EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
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