Twilight Zone
July 4, 2008 8:50pm
oh man ... let's see ... I have hospice coming on Monday evening for an evaluation with Stephanie. She's not terminal, I don't think, but …
nonibaby’s Profile
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About Me
Mom to a 22 year old daughter with juvenile parkinson's. I also have a 25 year old daughter who lives in Tucson. I'm helping my husband take care of his 90 year old father who lives with us and has neuropathy with lots of pain in his legs and feet. My dad is 89 and has adult onset parkinson's. He lives in Tucson and my aunt and oldest sister are his primary caregivers. I work full time outside the home. It's exhausting!
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Recent Activity
Today
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nonibaby gave Pounder a Hug 10:53pm
PS I LOVE your avitar!…
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nonibaby gave Pounder a Hug 10:52pm
You sound like an amazing daughter and woman. I applaud you!…
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nonibaby replied to bsbrm1’s discussion post 5 year pancreatic survivor! in the Caregivers support group 9:39pm
You know, I heard about this earlier today, and though I felt tremendously sad, somehow I felt at peace.…
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nonibaby gave CristH a Hug 7:41pm
Hey, Christy, thanks for your kind email. I hope you are getting through each day. No doubt they are…
Tuesday
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nonibaby replied to dlouise2’s discussion post Stuck in grief in the Caregivers support group 12:58am
Wow! This group of amazing woman never cease to amaze me. Wonderful words of wisdom, care, compassion…
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Journal
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Death Conversation
June 20, 2008 9:46am
Stephanie said something today that she has never discussed before. She said "Dieing scares me." I asked her why and she said "Because …
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Maintaining
June 17, 2008 8:06pm
Steph ate a good dinner last night for the first time in a while, and a good breakfast this morning. She also slept through the night without waking …
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Not Eating
June 14, 2008 10:17pm
Steph is not eating or swallowing good at all. We are a bit worried about that. She has been very lethargic all day.
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So much for a break .....
June 12, 2008 12:29am
This was supposed to be a break for all of us. Sunday I drove Stephanie up to the Lion's Camp in the White Mountains to attend camp for the …
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Hugbook
Hug
How are you doing? How's Stephanie? Thank you for the comments on my journal and the hugs. Mom is much improved. The Mirapex caused most of it. She's still a lot more foggy than she used to be but nothing and I mean nothing at all like she got while she was on that. Please write whenever you have a chance. Love and hugs to you both, Kim
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Thanks nonibaby!
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Hug
Hi buddy, I have been thinking of you guys . I hope things have improved a little.. Love to you D
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Just a hug 'cause I love you and think of you so often.. Donna xox
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Sending Love and Hugs and wondering how Steph is doing. Did the hospice person help? I think of you so often and wish so much we weren't so far apart... Love and Hugs, Donna xox
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Photos
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Support Groups
Close Parkinson's Disease
Mom of a 22 year old daughter who was diagnosed with dystonia at age 8 and recently discovered through genetic testing that she has juvenile parkinsons.
Treatments
- Baclofen Somewhat Helpful
- Eliminated since Zanaflex is working better.
- Lexapro Working / Worked
- For depression
- Namenda Working / Worked
- For memory/brain function
- Neupro Patch Not Working
- She had a severe vomiting attack so took her off.
- Seroquel Working / Worked
- For hallucinations/anxiety/sleeping
- Sinemet Somewhat Helpful
- For PD -- 25/250 4x day
- Zanaflex Working / Worked
- Seems to be working so far
Close Caregivers
I have a 22 year old daughter who has been diagnosed with juvenile parkinsons. She has progressively deteriorated since age 8. She has been in a wheelchair since 2001, but was somewhat independent until June 2006. In June 2006 she took a turn for the worse. Since then she has been totally dependent. We must feed, bath and stimulate her body to move. Her speech is almost non-existent. Her body's normal tendency is to go in the fetal position with her head, legs, hands, etc.
Open Dystonia
My daughter was diagnosed with dystonia at age 8. She is now 22 and genetic testing indicates she has juvenile parkinsons. That's probably what her diagnosis has been all along.
Open Bereavement
Type: Loss of a ChildI feel like I have lost my daughter even though she is still alive. The happy, outgoing girl is no longer there due to her disability. My gut is telling me to prepare for her early in life death. My mother passed away in 1984 and my mother-in-law in 1997. I always grieve the void in my heart losing these two special moms.
Treatments
- Crying Working / Worked
- Keeping Busy Working / Worked
- Prayer Working / Worked
- Talking Working / Worked
Open Epilepsy & Seizures
My daughter had a seizure on June 9, 2008. It is probably a result of her underlying neurological problems.
Treatments
- Keppra Working / Worked
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Snapshot
Recently …
- 5 hugs given
- 3 hugs received
- 2 discussion replies
- 1 journal comment
