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BARBGEO's Photo BARBGEO Posts: 784
1/17/09 2:17 P

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Hi Rhonda!

WOW!!! I am impressed! I cannot imagine trying to be a bookkeeper now... Whew!

Hope everyone has an outstanding weekend!
Barb

All the best,
Barb G


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RONDARC's Photo RONDARC SparkPoints: (202,415)
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1/16/09 6:20 P

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Hi Robyn, welcome to the team. Reading your symptoms you have, it sounds like what I was going through before I was diagnosed with a brain tumor. I really thought I had MS with all the numbness I would experience. When the doctor finally called for a CAT scan, they found a golf ball size skull base meningioma pushing on the small part of the brain that controls motor functions. I have a hard time with words, I can say something to DH and he gives me this funny look so I say it again and realize I've said something backwards or completely wrong, LOL, and if I'm rattled or upset, I can't even come up with a word! So much for being quick witted. Mornings are the best time for me too. That's when I get my work done (bookkeeper & tax preparer). By the afternoon, I'm exhausted and can't concentrate anymore. emoticon

Hugs to everyone,
Ronda

~~ Ronda~~

If you make up your mind to be happy there's no reason why you shouldn't have a fairly good time.

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BARBGEO's Photo BARBGEO Posts: 784
1/5/09 8:31 P

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It is very interesting that the 'grasping for words' is such a common situation. Aphasia is what I have (not sure if that would be the same term for you or not) but it was explained to me, not by a doctor but by another survivor--confirmed later by a doc.

I find the aphasia is very hard with my kids--it makes me sound 'stupid' at times... and when I am rattled, it is so frustating! Hard to be 'in charge' when I can't put a sentance together! I found that I began writing them, and talking mostly in the early part of the day when my 'words work better'. I IM (instant message) all the kids, and talk to my elder daughter long distance nearly every morning as she opens the shop she works in. Gives me a reason to get up and get moving in the AM.

One thing that I have heard over and over, from kids with parents with 'difficulties' is that they admire the parent SO much for the hard work they have to go through. I worked at a very large, busy high school in Atlanta, and even the toughest kids would confide that their parents were their heros--no matter what.

Wishing you the BEST today and each day of this journey.
Barb G


All the best,
Barb G


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TYLERROSE417's Photo TYLERROSE417 Posts: 92
1/5/09 6:04 P

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Dear barb,
Thanks for your honesty.
I can't trace my neurological conditions back to a specific incident... Therefore I have no idea of it's true beginings.
I have always been a bit clutsy & "spacey"... You know, the type of motivated person who makes a shopping list, and then leave it on the desk.
Anyhow, I had a hysterectomy a few years back, and everything seemed to go haywire after that.
I have to areas of "scarring" on the mesial tempoal part of my brain. (It requires 3 masses to be deemed MS)
So a diagnosis of MTS is what I have for now.
Very little information available.
I have difficulty at times finding the word I want, but more often use the wrong word, and am only aware of it when the person I am speaking to says "WHAT"?
My balance is poor. I require a cane and am having trouble with the Spark workout. But hey, I haven't fallen since last week, so I am ahead of the game.
I have a very poor depth perception making driving (or should I say parking) complicated.
I am a mom of teenagers, so the chaffering is a big part of the routine.
Pain... let's not go there... I get frustrated when I have no sensation, and then I have a period of remission, and get frustrated by the discomfort.
I am grateful for each day that I am mobile. I don't get warning before flareups. I just wake up and that left side is dragging again. It worsens the next day or so... eventually sensation returns, but always leave something behind. At this point, my left leg drags some... but since over the summer my arm hung limp, as well as leg, I'll welcome the latter.
OK... best I can give you on a MTS and me 911.

perhaps we can help each other.
Robyn

A Survivor of lifes daily ups and downs, and stronger for it!


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BARBGEO's Photo BARBGEO Posts: 784
1/4/09 6:03 P

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Hey there and WELCOME!

I am a 4.5 year survivor of double TBI's. (boxers brain). My main 'problems' are aphasia, balance (lack of) and low energy levels. I do have pain, pretty much daily, but am doing a pretty good job right now, maintaining some level of 'life'.

My husband and I have had a rough few years... He is NOT a good caregiver (though I have been workin' on him) -- just doesn't come naturally to him at all... He was downsized (again-4th time) last fall, and is 61 years old... my career is over as well, due to my injury... We do raise llamas and ducks on our small farm in SW WA STATE, and hope to expand to a B&B type situation. We have 4 kids, all grown and two grandkids, 1 and 10.

I know a number of people with MS, but don't really know that much about it all... I think the emotional up and down is pretty universal in our group... Life just ain't what we expected it to be... but we are HERE, and we are working on ourselves to be the best US's we can BE!

Hugs and welcome,
Barb G

All the best,
Barb G


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TYLERROSE417's Photo TYLERROSE417 Posts: 92
1/4/09 1:39 P

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Thanks for the kind words. I am doing well right now, which makes it the right time to fight to regain control over this aspect of my life. My real frustration healthwise stems from not knowing when the next flareup might be.
BUT
I know every pound I can lose before then will help my mobilty.
OK
You've litened to me go on and on, I'd like to learn about you and the rest of the team.

A Survivor of lifes daily ups and downs, and stronger for it!


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TREE1988's Photo TREE1988 Posts: 1,269
1/3/09 9:18 P

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Hi. I'm sorry you are having such a rough time. One of my friend's husbands has full blown MS, and I know what a struggle it is for him - and for her as his caregiver. Hopefully someday they will be able to fight this horrible condition!!!

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TYLERROSE417's Photo TYLERROSE417 Posts: 92
1/3/09 3:08 P

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I HI.
I joined Spark 2 years ago.
Then my world was turned up side down, and I retreated to food, my comforter...
I've been clumsy for years...
so nothing new stood out in particular.
When I feel this time, I broke 1 ankle, and sprained the other... thrillsville.
By the time I finished physical therapy I had made great strides in picking up crap with my toes... alas, this was not a skill I might ever have use for outside of physical therary.
My therapist reluctantly informed me, my balance was worsening, and I appeared to have increasingly diminished sensation in my left foot. My doctor said it was time to find out why I fall so much.
MY LEFT FOOT...
A month later, my left side was numb.
I dragged that foot with determination.
And somehow, I regained use, and sensation.
"Probably MS ...
We'll see."
5 months later I had a worse fall.
I felt nothing this time.
Bruises were visable, but it didn't hurt.
Anyhow... off my soapbox.
I have a disease no ones ever heard of called Mesial Temporal Sclerosis. MTS refers to the location of the scarring in my brain. I have 2 scars. Three scars is a diagnosis of MS... an understandable life sentence- with a frustrating, albieit, predictable pattern. There is protocal for MS. Drugs, therapy, support systems.
To be honest, I am ready for a diagnosis of MS... at least I would know how to fight back.
MTS hangs like a noose around my neck. Flareups, and remissions... each taking a little bit more... it follows a cycle, much like MS... But it's not.
Will I convert to MS... perhaps.
Will I ever understand this disease with no real information to be found... perhaps.
BUT
My goal now is to lose enough weight... to get healthier.
Even 5 pounds might increase my balance that is so lacking.
Even 5 pounds might make my cane a bit sturdier, and my breathing easier.
"This new drug might not block weight loss..."
We'll see.
All I know is it's time to stop blaming the drugs, the disease, & the side effects of both.
I am fat because I am a comfort eater...
Time to find comfort in another way.
SOMEHOW...


A Survivor of lifes daily ups and downs, and stronger for it!


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