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Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).

My mother's story - my heart is breaking for her

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Unread 11-02-2012, 08:43 PM   #1
LesleyMcg
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Frown My mother's story - my heart is breaking for her

Oct 5 I got a call from my dad that my mother (65) was at the ER as she wasn't feeling 'right'. I went to meet her and she was just waiting for the results of her brain scan. Her arm and shoulder just started moving/flailing about. The CAT scan showed no cancer, evidence of a stroke or other abnormalities. They gave her a referral to a neuro and send her home.

2 days later she is worse, arm, leg, shoulder and face on the left side all jerking around, almost non stop. She went to the hospital as the underside of her whole arm got red and would not go away.

Went to neuro and he did some basic testing, watched her and talked to her. on THAT day her movements were more 'sinewy' and less jerky. She had about 4 good days where things were slowing down. He recommended an MRI and asked her to call and report on the trend of it getting better or worse. She had an MRI on Friday morning and by the afternoon they called her back and made another appt for the coming Monday. They did a contrast MRI that day. By Tuesday afternoon the neuro said he wanted to see her.

My parents and I went and she was told there was a lesion in the center of her brain that controls movement. He said she had something called hemiballisums/hemichorea (sp?). What they don't know is if this was brought on by a stroke or hypergylecima. She is a type 2 diabetic. HOWEVER he told us that usually a person would have high blood sugars then this would happen, they would be put on insulin and the movements would get better or lessen. But, she started on insulin about 2 weeks before the hemiballisums started.

His plan, at the moment, is (a) start her on tetrabenazine (she will start at 1/2 a pill once a day and then build up to 1 pill 3 times a day but it will take quite a few weeks to get there) (b) he video taped her to show to his mentors (c)he is going to consult with his team at the hospital and an endocrinologist.

She is beyond exhausted with this movement and it has been a month of dealing with this.

Does anyone have any input? Any stories? Articles to read etc.

If so, it would be greatly appreciated.

L.
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Unread 11-02-2012, 11:02 PM   #2
Sam
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Quote:
Originally Posted by LesleyMcg View Post
Oct 5 I got a call from my dad that my mother (65) was at the ER as she wasn't feeling 'right'. I went to meet her and she was just waiting for the results of her brain scan. Her arm and shoulder just started moving/flailing about. The CAT scan showed no cancer, evidence of a stroke or other abnormalities. They gave her a referral to a neuro and send her home.

2 days later she is worse, arm, leg, shoulder and face on the left side all jerking around, almost non stop. She went to the hospital as the underside of her whole arm got red and would not go away.

Went to neuro and he did some basic testing, watched her and talked to her. on THAT day her movements were more 'sinewy' and less jerky. She had about 4 good days where things were slowing down. He recommended an MRI and asked her to call and report on the trend of it getting better or worse. She had an MRI on Friday morning and by the afternoon they called her back and made another appt for the coming Monday. They did a contrast MRI that day. By Tuesday afternoon the neuro said he wanted to see her.

My parents and I went and she was told there was a lesion in the center of her brain that controls movement. He said she had something called hemiballisums/hemichorea (sp?). What they don't know is if this was brought on by a stroke or hypergylecima. She is a type 2 diabetic. HOWEVER he told us that usually a person would have high blood sugars then this would happen, they would be put on insulin and the movements would get better or lessen. But, she started on insulin about 2 weeks before the hemiballisums started.

His plan, at the moment, is (a) start her on tetrabenazine (she will start at 1/2 a pill once a day and then build up to 1 pill 3 times a day but it will take quite a few weeks to get there) (b) he video taped her to show to his mentors (c)he is going to consult with his team at the hospital and an endocrinologist.

She is beyond exhausted with this movement and it has been a month of dealing with this.

Does anyone have any input? Any stories? Articles to read etc.

If so, it would be greatly appreciated.

L.
Hi. I'm not familiar with your Mother's condition, but figured you could use some support. Its very difficult to watch someone you love suffer. There are two things I see in your post that tell me you have a good Dr. First, he is not afraid to say that he doesn't know everything. Secondly, he has made a vidoe tape so that he can use not just his own head, but those of his collegues to come up with an answer for you.

Your father has probably already done this, but if not, have him take any objects that her uncontrollable movements might knock down and hurt her. Coffee tables and other low barriers should be moved our of her way. You don't need more injuries.

Your folks will need all the support they can get, but don't forget to take care of yourself. We all know that at some point, our parent's are going to have problems, but its still hard to deal with when it happens. If you need to vent, this is a good place to do it.

Does your Dr. have anything that may allow your mother to sleep? It takes a lot of energy to keep moving as she is, and lack of sleep can only aggrevate the problem. Make sure her nutrition is optimum. She will be burning more calories because even at rest she is still moving.

Please let us know how things go?

Sam
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LesleyMcg (11-03-2012)
Unread 11-03-2012, 10:21 AM   #3
LesleyMcg
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Thank you for your response. I am going over today to cook and help organize a few things. She is a type 2 diabetic so nutrition is key here as well. Sleep is a huge issue for her in general but with this knocking her schedule even more as she is taking when she can get it which in turn is messing up her eating schedule. She only started insulin just weeks before this incident.
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Unread 11-03-2012, 03:28 PM   #4
ginnie
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Default Hi Lesley

Support and prayers from me too. I am sorry your mom is having to go through that. I am glad that you love your mother. Give her lots of hugs, and just be there for her as she goes forward to try for resolution. Your love is the best medicine. ginnie
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