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.
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What's New Today
about 4 hours ago
I've been waking up at 3:30am for over a month now. Sense my dad fell and has been recovering. So much has been going on and it's been frustrating that during this time I really need more sleep I can't seem to get it. I've asked myself why? What is going on with me that I'm wide awake so early?
I realized this morning that I'm getting up early so I have time to cry for a few hours before the days tasks start rolling.
I get my coffee, read my FB posts and just weep...then I pack my feelings back into the box, put the lid on and push through. I wonder if I will still do this after dad comes back home????
farm gal said...
about 15 hours ago
I get so very tired. Just hope I can keep taking care of my husband. Now it seems like I have so much responsibility. And his short term memory is changing quickly which is surprising. It is comforting to read all your posts and know so many others are going through the same thing
1 day ago
I am so sorry everyone is going thur so much lately.. Here is my prob.. sounds silly to all you who have been thru so much. So hubby looked up PD on the internet!!!! Now he is in a almost shut down mode..... he can do so much!!!! I think what he read scared him real BAD!!!!! He keeps asking if this is as good as it is gonna get??? I say ...yes!!! But hopefully it will take years before it gets worse.....Neruo Doc don"t want to see us for 4 months...Good sign ...I thought...He says Meds not working.....says I don"t know how he feels.....He is exhausted all the time......so sad and confused!!!!
2 days ago
I hope what they say about God not giving us more than we can handle is true. Let's just add to the PD-DEMENTIA mess. Found a mass in John's neck, left side. Had an ultrasound and ct scan. Significant mass in neck going forward to the base of tongue and two enlarged nodes. Preliminary dx squamous cell carcinoma. We have appt next Thu. with a head and neck surgeon dept. Will do biopsi, I am sure, to confirm and then we will know where to go from there. John's pcp is thinking they will recommend radiation. John's first reaction is ok to that as long as he will not need a feeding tube..then it is a no go. I told him not to make snap decisions until we have all the facts. Incredibly, I am feeling quite calm about it right now. Guess I can panic later, lol. Keep ya posted. Send us some prayers, please. It has been a tough month. Oh, pcp said this dx explains the rapid decline in John's ability to swallow and his voice being almost gone, and nit understandable when he does try to talk. I felt like it was progressing way too fast to be the PD and he agrees.
2 days ago
Update on dad,
Well the good news is dad is doing amazing! In fact I think he is coming home from this rehab stronger and more alert than before he fell. He is off all statins, his GP the quack has had him on so many distractive medications over the years and they have attributed to his mussel wasting and caused him even more mental confusion. He only takes his "head meds" now....Nemzaric, Sinement, and an antidepressant. He saw his Ortho yesterday and the doc says he has really healed well. He is transitioning from a walker to a cane!
You should see him in physical therapy he goes twice a day six days a week he impresses everyone who works with him.
He Is going to be released on Friday the 30th.??
The bad news is:
House is still tore up floors are done but everything is getting painted so that we can make sure that there's no mold spores floating around in the air there's a cleaning crew coming on the third hopefully the painters will be done by then.
The people who do the laundry at the nursing home didn't check his pockets and washed his cell phone now we need to figure out how to get a new one until then they put a big sign next to his bed with my phone number problem is he does forget how to dial it from time to time.
I mentally emotionally and physically exhausted I seem to wake up at 3:30 4 o'clock in the morning to matter what I do.
I'm having to have dad go to my brothers house when he gets out on Friday, it's not the best situation there they have two large dogs who get very excited when they see dad I'm scared to death he will get a knock him over and my brother has a Lasadazicle attitude in the caring for dad's medications scheduling update taken care of dad and tends to leave dad alone for long periods of time.
This means I'm gonna have to go up there and babysit Dad and then come back down here to sleep at night worrying whether or not my brother is going to pay attention very scared that dad will get up during the night and fall. Anyway it is what it is I'm just doing my best to keep going one day at a time and within a week or two to figure out what our new normal is.???? Thank you so much for thinking of us??????????
8 days ago
Slept at home last night. Floor crew was supposed to have things all finished and cleaned up????
But I came home to find not only wood scraps, savings and dust all over but their trash, old water bottles and just overall filth inside and out! It felt like disrespect! I called contractor and before he could get over I found tons of unfinished molding, doors that won't close and even a hole in my bathroom wall! WTF????
Grandson Aaron and I worked till late to clean up and move furnishings around. They didn't put my bed back together right so I spent the night worried I would end up on the floor.
They are coming back this morning and I have a list of 20 things that need to be fixed before he gets my credit card!!???? Next we need to paint dads room. The electrician will be here Monday to mount TV above our fake fire place, mount my TV to wall in my room, install new ceiling fan in dinning room, and new exhaust fan in my bathroom. But wait there's more???? cleaning crew can't come till the Tuesday to help me get the last of the dust and grime off before dad comes home???? This was a super hard month....starting with dads fall last month on the 14th. On an up note Dad is doing GREAT! He has made steady progress and is such a resilient man????. He is working hard and doing his best to get strong and come back home. My goal make things safe so we don't have anymore ouchies ??????????
10 days ago
OMG...John just took a caughing choking fit eating a snack. Scared the blank blank out of me! No more evening snack for him!
John is having so much trouble swallowing. Especially water. And cannot swallow some of his pills. I crush hi vitamin D and statin and put it in his applesauce. He cannot get the stool softner and aspirin down. Falls off his tongue and gets lost in his mouth. So far, he is still swallowing the carbidopa.levadopa and donepizil and glycopyrrolate. Those are not coated and seem to go down better. The coated ones will not stay on his tongue long enough to swallow because he cannot move them to the back of the mouth. Not sure what we will do.
10 days ago
Feeling trapped emotionally today. My husband "confessed" that he was in another car accident today. The 3rd in 2 years. The first was a pot hole going into New York - no way to avoid it without hitting another car; the 2nd was when I NYC transit bus sideswiped the car - again NYC so no way to get out of the way. The 3rd was yesterday (again NYC) a teenage driver slammed on his brakes and he hit the car from behind. This is a 2 year old car ( the last one was totaled when he hit an SUV stopped in the middle of Route 4 (NJ) busy area with NO PARKING LIGHTS on (answering a text).
We can't tell anyone for fear they will report him and he will lose his license (which would devastate him). I still feel safe driving with him. I was talking with his sister about it during one of the prior accidents and she (lives in Florida) threatened to call and have his license yanked. I see the apprehension in his eyes about driving into the city. He has decided to take a driver if he has a trial. But we can't afford a permanent driver.
Luckily I am very good at painting so I will touch up the bumper = it won't be perfect but it will be ok. Just wanted to be able to share with someone who won't start screaming that he needs to not drive anymore.
11 days ago
Black mold found in 8/10 spaces on our home . Floors were so posed to be done by tomorrow now looks like weekend maybe with extra repairs. Stayed 1st night got super sick still sick. Used up all free stays at casinos so looks like grandson and I will be camping in the car after tomorrow. They want dad out of nursing home by Thursday or Friday going to have to agree to do private pay to keep him there till hose is safe and organized. It's $688 a day????
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