- SamiBebe
- Sex: F
- Data Quality: 3 stars
- MSA: 13 yrs
- Type: Multiple System Atrophy (MSA)
- Mood: Very bad
- Cognition: Moderate
- Autonomic: Severe
- Head: mild
- Arms: moderate
- Legs: severe
- Tremors: moderate
- SamiBebe
- Female, 45 years
- Greenwich, NJ
- Primary Condition
- MSA
- Type
- Multiple System Atrophy (MSA)
- First symptom
- Jan 1999
- Diagnosis
- Aug 2007
About SamiBebe
Lately, the apathy is getting worse, worse, growing in severity. I have been taken off Hospice management and am not being treated according to my wishes in my living will. I have my DNR posted and am ready for God to take me home whenever he is ready for me. I was so relieved to have palliative care in my home, and they took it from me because Medicare had cutbacks and I was not losing weight like they thought I should. I am pulling away from everyone in my life, and I am so sorry. I cry a lot.
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- My CareTeam
More About SamiBebe
My name is Jessica Sam Pennington, friends call me Sami. I am 44 years old. I have had MSA since 1998. I had symptoms way before that, but that is when the full blown version kicked in. I was told I was crazy and had psychological care forced upon me, while no one was looking for a neurological cause. I haven't driven in 5 years and am virtually incapable of withstanding gravity.
I try as often as I can to walk, although very dangerous. I quit college with less than half to go, now have cognitive thing. I read small amount, okay. Large amounts really confuse me. I have trouble pulling it all together. I am also finding that I write like I speak, and I feel like I am next to me instead of in me way more now. Like disconnected. Really pretty scary. After all. At this point I survive solely on how many people I encourage use internet for this. I spend all day tell people how much I love them, and when you are count your blessings, sometime you just lose count, it's that many. I am blessed. I was try to figure out how to change mood on here. I may be like really sick, but I am actually not in bad mood. Just because can't control happy or mad or sad doesn't mean I am not happy most of time.
I was dismissed as crazy so many times I could have built a house with presciptions for this, I didn't respond well to. I was very confused about what was happening to me, and scared and I couldn't control my mood, doctor said was depressed. Well, if you can't work suddenly, or no longer can drive because of seizure and was sudden, need someone everyday to keep you go. ..you be mad too right? I think I was more mad I have really 130 IQ and not stupid. I was making good money finally and then BAM* done. Also I was straight A student . Had to quit in Dec.2010.
I also do this weird thing where I get something in my hand and can't let go...then absence seizure. Somehow, even if my other hand free, I can't do anything. My fingers have to be pried off someone shirt, something in my had. I once held onto a bush outside long enough to be sunburned. Finally mom came got it out of my hand. I don't know. So tired.