Parkinson's Support Group
Welcome to this online support group for caregivers, family, friends, and others with an interest in Parkinson's care. Please introduce yourself - Ask for advice - Share your experiences caring for a loved one with Parkinson's disease. Talk about symptoms, treatment options, side effects, daily life, your tips for others. Vent, laugh, and come back as often as you need to feel less alone.
You can also find information that will may you manage financial and legal matters for your loved one in the Caregiving Money Matters Resource Center.
Help spread the support to more people in need -- Please tell a friend or two. Thanks!
What's New Today
6 days ago
Hope? Studies over the last ten years show that SSRI antidepressants could work for Multiple System Atrophy the same way dopamine works for Parkinson's. Gary is starting on Paxil today.
Currently rasagiline is used in Parkinson's, so it isn't a new concept.
But it is a first for MSA.
10 days ago
So sorry to keep bugging the group, back a few weeks ago my uncle was as normal as me and you. Except for his tremors on left side, now on dilantin for seizures, feeding tube because can't swallow, sleeps constantly, non speaking, at least last week he could garble, now nothing. All this with a Mia doctor, gone ghost. Just want to know is this the beginning of an end so I can prepare my mom....this is her only living relative and her hero.
12 days ago
New to situation. Uncle has. Last 3 weeks he has become really sick,hospitalized on vent., a kinetic crisis, neurosurgeon called it, pneumonia, tremors both sides, but our main concern are the terrible hallucinations he was experiencing and continues seem not to be as vivid and a really bad speech problem, can't understand hardly anything he says. Is this common for an advanced stage?
13 days ago
Hey guys, just need a little tlc. My hubby has glaucoma along with the diabetes and parkinsons. Went to the eye dr. who put him on altitude sickness prevention pills (along with his already used eye drops) to help reduce the fluid. Yesterday, he slid out of his chair 3 times, was too weak to really walk and then the hallucinations started at night. Really bad. Called the emergency PD doctor who said it sounded like overmeds. Finally able to get him to eat a banana and go to sleep. Today was able to talk to all the doctors and tomorrow he is getting bloodwork to look for low potassium, electrolyte imbalance, etc. He seemed somewhat better today but just now I told him I was going upstairs to take a bath (I haven't slept in over 24 hours) and he asked if it was okay if he worked at the other table. It was the same table he was at. Sigh. I get very nervous leaving him alone at all.
Has anybody gone through something like this and is there a light at the end of the tunnel - or is it, as I fear, the oncoming train.
14 days ago
My mother is 70 and has Parkinson's. I recently moved in with her and my father after the end of a relationship and pressure from aunts and uncles to help them. Dad has been her main caregiver, but is 75 and had heart issues/surgeries/can barely get up and down the stairs. He has no patience with her and is constantly raising his voice/very negative. She sits in her chair all day. Has her meals there. Sleeps sitting up in her chair because she can't get up out of the bed to go to the bathroom at night. She has a walker to get to the bathroom, but had another fall tonight. Her legs are so weak from not moving at all. She says she is too tired for me to help her with a bath, she is dirty. I try to be motivating, suggest things, want to help, organize clutter and get rid of piles of stuff. Neither of them are receptive to any of my ideas or suggestions. They are living in filth in a huge house that they refuse to move out of. They have been unable to take care of it for many years. I struggle with what she can't do and just won't do and says she can't. I'm at the end of my rope with them. I don't know how to have patience with them if they aren't interested in helping themselves. I have a lot of guilt for feeling so disgusted with them and not feeling empathy. I tried to get them excited about having a cleaning service come in (that I would pay for) to help clean things up and they wouldn't even consider it. Didn't want anyone coming to the house. Mom cancels her doctor's appointments last minute. She is always "feels to bad to go". Feels to bad to sit in the shower chair and have me wash her hair. I'm so frustrated. I'd like to run far far away. Has anyone experienced this? My flickering flame is being stomped out.
15 days ago
I am writing about my sister. She doesn't feel well enough to type. She is 77 and was diagnosed 12 years ago. She was put one SInemet right away when her only symptom was shaking of her right hand.
ABout 6 years ago she became extremely anxious, so her doctor gave her Ativan . She was undergoing a lot of stress, moving 12 hours away while trying to sell her house in her old city.
Her life situation is better now, but since she has been depressed, she tried several antidepressants. They all made her sick..
Then her family doctor gave her Cymbalta. Since the half life is so short, she started having brain zaps 2 hours before her daily dose.
Her doctor said to take her 30 mg dose every other day for 2 weeks and then STOP.
What what I've read about this med, the only people who manage to get off smoothly are the ones who do a 10% decrease, very slowly.
She had been only taking .5 mg of Ativan twice a day, and had no need to increase it, even though her doc said she could take 1 mg 3 times a day. Since quitting Cymbalta she is now taking .5 mg 4 tomes a day and worried about getting addicted to it, and now feeling the need to take more.
She is crying and feeling awful, can't sleep. Just last week started equip for restless legs and still only manages to sleep 3 straight hours. Then after a few hours , after her Sinemet dose she may get a few more hours.
Has anyone else been through this, and what has helped. ?
I live 12 hours away and talk to her almost every day. I don't know how to help her. I don't think her doc should have reduced the Cymbalta so quickly. Thanks
An anonymous caregiver said...
22 days ago
HI. I am new to this board and am wondering if those of you who have loved ones in long term care facilities can tell me how normal it is for a resident with Parkinsons to fall while in the care of a LTCF? How frequently does this happen? I am concerned that my dad has fallen 3 times in the last 5 days and I don't know if I am being unrealistic to think that this is too much. Here is some background for my dad's situation...
My dad has Parkinsons and Alzheimers and last month went into a long term care facility that specializes in memory care. Last week he had a rise in blood pressure that prompted a 2 day hospital stay. As it turns out it was a medication issue and was resolved. Since he came back to LTCF he has been having much more difficulty with muscle weakness and balance. It is as if his PD has gotten considerably worse since the hospital stay. He has been out of the hospital 5 days and has fallen 3 times. (Twice on the night he was discharged.) Previous to this he had only fallen twice and that was before he entered the LTCF. Thankfully he has not been injured by these falls. I know LTCF do not provide one on one care and insurance does not cover one on one custodial care. Is this normal for Parkinsons patients? What can I expect the facility should do to minimize this risk? How frequently should they be checking on him (especially at night)? Most of the falls have happened when he gets up at night to use the bathroom. He has a walker but with Alzheimers he doesn't remember to use it. Any advice would be welcomed. Thanks.
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