A recently diagnosed new member in Los Angeles

New members should feel free to introduce themselves here

Postby TwistedHelix » Sat Sep 08, 2007 6:24 am

Ally, honestly, just because I was around to witness the extinction of the dinosaurs, there's no need to call me one! It took me ages to clear up the mess, and do I get any thanks?
Grudgingly :wink: , I have to admit that the advice you gave to L4C is excellent, and I second every word.
Shell, I bet many of us have hidden for a while, but I've never been able to work out quite what we're hiding from – from ourselves? From facing reality? Is it some kind of shame that we suddenly appear dependent and weak? Or is it just that we're so tired of explaining everything all the time and struggling to appear to be coping, that there are times when it just doesn't seem worth bothering?
Coming out once was hard enough to do, but struggling to accept yourself as a disabled person is an enormous personal battle, and one which often is not acknowledged,
Dom
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Postby AllyB » Sat Sep 08, 2007 1:02 pm

Ally, honestly, just because I was around to witness the extinction of the dinosaurs, there's no need to call me one! It took me ages to clear up the mess, and do I get any thanks?


You will never live that down - it doesn't matter that many of us are actually close to your age (or even older in Bob's case!) - it has stuck now, and living in Africa has given me the long term memory of an elephant ('course, I often forget what I had for breakfast...), so you have fair warning....ou were the one who wanted to know where to buy some support - I am actually quite cheap :lol: and was prepared to offer my services in exchange for some cool fossils for my six year old....

Or is it just that we're so tired of explaining everything all the time and struggling to appear to be coping, that there are times when it just doesn't seem worth bothering?

Soooo true! We all struggle to "appear" to be coping, but how deep is that? Is it just a facade? On some days, that mask is all we have to give the world.

but struggling to accept yourself as a disabled person is an enormous personal battle, and one which often is not acknowledged,


This is another major issue - I do not think that I have accepted myself as a disabled person, in spite of my obvious limitations...Some very profound questions raised by you and Shell - there is an element of shame - I get embarrassed when strangers stare at me 'cause I walk very strangely - we are suddenly and very obviously not "normal" and our bodies have really betrayed us, and medicine can't really offer much right now....

L4C - sorry, this is probably more than you needed right now, but at least you can see that we are not afraid to discuss any topic under the sun 8) and I am really interested in how you experience UCLA and what they have to offer you.

All the best
Al
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Postby Lyon » Sat Sep 08, 2007 1:32 pm

Gosh Dom....although I REALLY feel for you, I, of course, am just an innocent bystander :twisted:

Bob
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Real cheese is for mice

Postby Smilingface » Sat Sep 08, 2007 6:36 pm

Hi Mr. Cheese! I am a fellow PPMS'er with a very similar story to yours. Please do not feel alone. I was diagnosed 10 months ago. I have learned a lot in those months not only about the mechanism of PPMS but how to take better care of myself and how to have a positive attitude, largely from the support of those on this forum. I am on treatment that most would agree is speculative, but it is very tolerable and inexpensive. Besides, I think it is working for me. I am healthier today than I have ever been before because of diet, exercise and a good attitude. I still walk unaided but I know there may be a time when I don't, that's OK because it is only a physical disability. You don't have to walk to fly!

PS I had to modify the Swank diet and add goat cheese and soy cheese after about 2 months. Oh yeah and a little bit of dark chocolate once in awhile.
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Postby Katman » Tue Sep 11, 2007 10:40 am

Welcome to a place to learn about MS. I, too, am PPMS and am on the same treatment that smilingface is on. I am greatly improved and have most of my lost function back.

Rica (aka Katman)
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Cheese lovers unite!

Postby cheerleader » Tue Sep 11, 2007 6:12 pm

I’ve been lurking on the boards since my 44 year old husband was diagnosed last March. The reason I’m “coming out” is to say hello and to cheer on another cheese-loving southern Californian post production TV guy! My husband is also in the biz- a composer, and we’ve spent many evenings around a fondue pot at Monsieur Marcel’s. I’ve come forward to encourage you, as I try to encourage my husband every day. We know nothing about the future, all we have is this present moment. Keep working, find ways to keep doing what you love. My husband takes his spotting session meetings on his computer, via an isight hookup to the studios. He writes and produces his music at home, and puts it up on an FTP site. He doesn’t need to leave the house as much. Have a family, travel, live every day to the absolute fullest. None of us knows where we'll be next week, let alone ten or twenty years.

This site is amazing. I’ve learned so much about treatments, strength thru adversity, and the real deal about MS. You’re doing the right stuff. Swank works, so do many of the anti-oxidant supplements. My husband’s on daily injections of Copaxone. An interesting side effect is that C. raises the uric acid levels (a powerful antioxidant, also created by inosine) as well as giving his immune system something else to attack. He eats organic, takes probiotics and has found Lauricidin helpful for regularity with its natural antibiotic, antifungal and antiviral properties. My husband’s liver enzymes were 10x normal when he was diagnosed, he was jaundiced, exhausted, numb and tingly on his left side. He thought it was the flu, or a pinched nerve. I kept putting him in the hot tub...oops! The MRI showed plaques on his brain and cervical spine. The lumbar tap confirmed it all (He got to lie down for a couple of hours in a nice hospital bed...I’m SO sorry for your experience.) We are combining western medicine with complementary treatments. We got his liver numbers to normal in a month with milk thistle. He exercises everday (can’t run anymore, either.) On his bike, walking, hiking, exercise is key. I wish he’d do yoga with me, but he laughs at the idea...

The fatigue and leg pain are the worst residual symptoms from his first attack. Amantadine helps with the fatigue, and stretching and exercise keep the clonus and stiffness at bay. But some days really suck. The recent heatwave took it out of him.

We pray together as a family, laugh together, eat fish together, and find ways to celebrate all the good stuff.

Learn all you can; search the natural, holistic sites for info. Find good complementary care. Hang in there. Go team, Go!!!

Best,
an aging cheerleader
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Postby MaggieMae » Thu Sep 20, 2007 7:20 am

Longing4Cheese,

Why is it "apparent that you have PPMS"? Did your neurologist tell you that you did? Did I read correctly that you are on no meds, just the Swank Diet?
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Postby Loobie » Thu Sep 20, 2007 10:02 am

Cheeseman,

First and foremost WELCOME! I, too, have spent many posts bitching, then apologizing about bitching, about what this disease is taking away while I still work full time and gett around on my own two feet. This year has been hell for me MS wise after about six years where I worked out harder than when I was healthy and felt pretty damn good. No one here ever held it against me and I think I know why. The people who have much more advanced disability have, to a (wo)man, all been through this. I'm in the middle of it right now. I'm the only breadwinner in the family, everything is uncertain, how do you look forward to the future, etc.,. It just sucks, but all of us MS'ers go through it and this board is a good place to get the support you need.

Never apologize about being pissed about what this shit does to you. You are starting to family plan, take off on your career, and someone cuts your legs out from under you. You've earned the right to bitch. The big challenge, and this is where the wonderful friends you will find here come in, is making all the adjustments you never wanted to make and, through it all, keeping a good outlook and being able to laugh and smile. It is one screwed up situation when you are first getting into it (I'm talking like I'm on the other side of it, I'm not and don't know if I ever will be), but by realizing that attitude is everything, you will find a way. I find myself some days feeling like crap and yet I'm OK and joking and laughing. Other times I don't feel quite as bad and I feel like my life is over. The key is staying on top of it instead of it being on top of you. There will be many times where you are on the bottom no matter what you do because it just doesn't take many breaks and the period of time spent fighting is just tiring.

Don't get discouraged and remember, when you just have to explode, come on here and post about it. You will get so many responses that you can pick and choose what approach works for you. After all of this I actually have one suggestion: don't isolate yourself. The one thing that always works when nothing else will is for me to force myself out; to be social. It always works, and I'm always pleasantly surprised by how well it works.

Keep your chin up and keep your support system intact. There is no substitue for a good support system.

Lew
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