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GRANDMA442's Photo GRANDMA442 Posts: 342
2/24/09 2:27 P

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Right! Mono and MS do not mix well. She only had 3 brain lesions when she was diagnosed in 1997 and after the mono 2 years later she had too many to count. There was a real big one in her frontal lobes. Before that she was working full time and doing well. I mentioned this site to her again and I think she will sign up. I hope so! Thanks for the support! And good luck with your new program! I am sure that you can do it! Don't over do it, just rev it up a little. Small changes can really make a difference! emoticon

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BARBGEO's Photo BARBGEO Posts: 784
2/24/09 11:01 A

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Wow. A bout with MONO???? WOW!
I am so sorry she (and you) are having to cope through all of this at once -- it sounds like it has been a very rough several years.

If she wants to come on board here, the nice thing is Brain Buddies is a fairly small group... I haven't been on the MS team sites, but I like the idea that we are not numbered in the thousands...

Sending all hugs to all today!
Barb

All the best,
Barb G


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GRANDMA442's Photo GRANDMA442 Posts: 342
2/24/09 10:27 A

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Yes, she can use the computer although I won't let her online unsupervised now because of a "a series on unfortunate events" culminating with buying a non-returnable queen sized bed when she had a new double bed. Changed my phone service a couple of times, etc etc. I told her about this site and she is interested - I hope I can get her to join. She is 50 lbs overweight so it would help in more ways than one. The MS is starting to seriously affect her mobility and the weight is part of that. Her husband did not get good information when she became disabled, he did not understand that she could not help her unusual and sometimes disturbing behavior. No one told him she had dementia. Now that he knows what happened he feels bad about how he handled it but that doesn't change the fact that she now lives with us and they are getting a divorce. He stayed with her for six years after the injury (it came on suddenly with a bout of Mononucleosis) and then basically kicked her out 4 years ago. He is supportive now but the truth is he could not care for her and work too. Lord knows I can't! That is where my husband comes in - sort of!

Edited by: GRANDMA442 at: 2/24/2009 (14:18)
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BARBGEO's Photo BARBGEO Posts: 784
2/24/09 9:51 A

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Hey there!
You know, I am amazed at folks who are so able (and willing) to look everywhere and go through 'heck and high water' to get the bestest for their family members... I wish an RN or SOMEONE who knew SOMETHING had given my husband a 'talking to' regarding my aftercare. He is VERY bright, and a NICE man (though terribly business absorbed & ADD) -- we have always had our 'challenges' (who doesn't?). My brain injury has torn us apart--and much of that is that I know full well, that while I have had consistent and good insurance, I have had little care and rehab.

I hope the site for your son works well. Does your daughter have the ability to work on the computer at all? Would she benefit from another person of her age group online maybe? Just wondering... Let us know how it goes for your son.

All the best,
Barb G


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GRANDMA442's Photo GRANDMA442 Posts: 342
2/24/09 9:14 A

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Hands are full indeed! Just one appointment for the kids today but a lot to do. We finally got Medicaid approval for our son - took over a year for no good reason but we are visiting a sheltered workshop tomorrow and hopefully he will be able to go there. We moved him here from MA where he had been in a good program but he was too far from us after we moved here to have the family together - we live next door to my "healthy" daughter and her family. I wish there was something like a sheltered workshop for my other daughter - she is on disability but could do simple work with supervision just as my son can. She goes 2 days a week to adult day care, most of the people there are elderly and she is 44. Fortunately she has always liked older people but she could do more and I think it would be good for her to have friends near her own age. Over all this move has been good for her - there is a big MS clinic here, doing research on the kind of disability that she has. They helped us find a therapist that understands how to help her cope with her losses and disability. Traditional therapy was worse than useless. Enough of my rambling - I'm glad I found this group!

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BARBGEO's Photo BARBGEO Posts: 784
2/23/09 10:51 P

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Hi! Welcome to our group. I am glad you found us. I am a TBI survivor myself, but we have many folks here from various backgrounds.

How are you doing? Sounds as though you have your hands full!

Hugs,
Barb

All the best,
Barb G


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GRANDMA442's Photo GRANDMA442 Posts: 342
2/23/09 5:12 P

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I am fairly new to spark people but was wondering if there was a brain injury group and here you are. I don't have one (yet) but I am a mother and caregiver to two adult children with very different brain injuries. My son had encephalitis in infancy and was left with mental retardation and autism (we are very lucky to have him still with us) and my daughter has dementia from multiple sclerosis. Her symptoms closely resemble a TBI. I am a RN working part time and plan to retire soon.

Edited by: GRANDMA442 at: 2/23/2009 (17:12)
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CARICAT_'s Photo CARICAT_ Posts: 261
1/20/09 3:51 A

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hiya Diva!

I too have a brain tumor... mine was found while I was a child, 21 years ago in may =)
When I was getting involve with Sparkpoints last year, I too searched for a group about brain tumors.... and there was nothing! So, then I considered making one... There's not as many people out there with brain tumors, so I decided to make it for anyone with a neurological problem, because over the years, I've noticed that many of the things we struggle with on a daily basis, are the same!

I had an MRI last April and we found that my tumor was growing AGAIN, Radiation was scheduled for May/June and after it was done, I began the journey of recovery that I'm on now. When it wasn't happening very quickly, I asked Barbgeo to assist with moderating this SparkTeam =)
The good news is that the radiation is working, and my tumor is shrinking. =)
Have you ever had radiation or chemotherapy to treat your tumor?


CariCat

BLC 18, Sapphire Sweethearts - lost 11.3lbs, 8.75"
BLC 20, Sparkling Sapphires - lost 8.5lbs
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RONDARC's Photo RONDARC Posts: 10,905
1/6/09 6:59 P

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Hi PAYROLLDIVA, welcome to the team. Congrats on your weight loss! That's so great!!

Best wishes to you. emoticon

~~ Ronda~~

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

Border Collie Lovers - Team Leader
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Dog Lovers Team - Team Leader
SP Class of June 3-9, 2007 - Team leader
Our Herding Dogs - Team Leader


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BARBGEO's Photo BARBGEO Posts: 784
12/30/08 9:39 P

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Hi there,
Welcome to our group. I am sorry about your tumor--but am glad you found us. Your weightloss is amazing! I am still stuck over 170--blah... But am DETERMINED.
I have also been on this journey of brain injury for 4.5 years, though mine is a TBI.
Welcome to the group!
Barb G

All the best,
Barb G


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PAYROLLDIVA's Photo PAYROLLDIVA Posts: 48
12/28/08 10:16 P

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I've been with Spark for quite a while but just realized there might be a site about brain illness/injury... and there is!! I have a non-operable grade II brain tumor dx 4.5 years ago. I have many symptoms and a complete life change from it but try to take positive from each day and filter out the negative (that means I want no stories about people whom you know who have died from brain tumors!)(they don't help). My husband, mother and father and step mom have been an awesome support group to me from the beginning and I am lucky to have them... I wouldn't survive without them... and I am serious. I hope a healthy and happy 2009 to everyone out there, me and my family included!! :)


Whether you live your life to love or love to live your life... you will always find happiness!!


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