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
2 days ago
So so my back is killing me today. All that walking on hard floors, sitting in folding chairs at dads bedside... Sister, daughter and niece were here this weekend so I was I. And out of nursing home avoiding them. Both my sis inlaw Ki, and dad asked my daughter to please set here anger at me aside and make contact...she has not so I guess it's done...I've lost her. Dad is doing ok. Making some progress and trying his best. How I wish I could just rest today and not have to get dressed and go sit over there. I'm tired of seeing and hearing old people...there is no dignity or quality in living that way...makes me more determined to end my life after dad passes. I WONT end up like that.
dr t said...
3 days ago
Hey You all, Huggs and prayers! Sorry I haven't been checking in lately., but I've been busy with the same old routine of no progress, although we have nurses and therapists coming in. Of course, they say she is doing well to make they're records look good. However, they are not here overnight for every other hour when she calls to be carried to the toilet and back to bed. I as well, have out of town and minimally in touch family members suggesting that I must not be bringing her to the right Doctors. Ugh!! They do mean well, but don't get the disease and the fact that all cases are different and there is no magic wand or pill regimen! I have gained a great deal of respect for Neurologists who are courageous enough to specialize in treating this awful disease. My mother's last Parkinson's Dr. recently left practice... I just found a new one and have high hopes that he can tweak her meds just enough to keep her home!
3 days ago
I always come on to share my frustration with my husband and our situation. But today I would like to share a happy day. I heard him on his computer in his office trying to sign up for something "free". I went in, asked him what he was looking for, pointed out that "free" isn't free if they are asking for your credit card and was able to help him locate the form he needed and download it onto his machine. I then asked him if it would be easier if I typed in the info (I still have mad typing skills). He said yes, and said how much he appreciated my help. It felt great to be part of a team for a change. HAPPY SATURDAY!
4 days ago
As many of you know my [profanity removed] sister came in from out of town today to visit dad ... Of course she waits until the biggest part of the crisis is over and he is safely tucked into a nursing home where they will do everything that needs to be done for him .. She showed up there at 11 o'clock today she's been in town since early last night. I went over super early and got them all cleaned up and cute and then when I heard she was on her way I had a little bit of a panic attack and decided I needed to go .
Well my brother went by this evening to check in on dad and noticed in the sign in ledger that my [profanity removed] sister only stayed 45 minutes. So he asked the nurse what she noticed. The nurse said they sat with him until he had a BM and needed to be changed...they said they would wait but when she went to look for them they had signed out. Then when my sister in law called my bio sis, because she wasn't at their house like they had planned and asked how it was going she lied and said she was still there watching dad sleep???? the bio sis didn't realize my brother was beside dad at that same moment and she was caught in her lie.
I'll go early tomorrow and get him ready again if he wants me too.
They will go back to where they came from and like my dad said it will be us again.
4 days ago
I read everyone's post and feel like I am being so petty. I know I have much to be thankful for. That said, just got back from taking our 16 year old cat to the vet - she may have a tumor. But that wasn't the hardest part of the day. I left thinking that my husband was going into the city to work today (he is a senior partner in a law practice). As I left, he said he was just going to find the 3 folders I made him the other day and then he would be going in. Sure enough, 2.75 hours later, I come home and he is still here. When he goes to the city, his office staff help him with anything he needs for the day. Here at home, I am the secretary, receptionists, go-for, computer and printer repair, document scanner. I told him I just need 2 days a week for him to go into the office. Every week he schedules to go in 3 0r 4 days, and every week he is here every day. His office here is so messy, he gets distracted and sidetracked. I tried to clean it but its right back to a mess within 48 hours. We can't afford a cleaning lady or full-time office help. Then I take a deep breath and feel bad that I am even thinking of complaining. It just builds up.
5 days ago
Before daddy fell and got Hurt:
He would make himself a sandwich or a bowl of cereal I just cleaned up a little bit afterwards
He could go to the bathroom on his own change his own adult pull-ups and if need be his clothes wash up and would come out saying "I just had a situation"...."But I cleaned it all up" I would go in with the mask over my face Vicks under my nose and gloves, to put it back together clean so we could do it again at 10, 12, 20 minutes. Hands and clothes check was tricky because he was so neat he tended to hang up clothes that were dirty, he couldn't notice dirty hands fingernails are close he would always say I don't know how that got there I haven't warn this before. One day I was kind of at the end of my rope and I said what do you think I messed it up and then hung it in your closet?.
He would sit in his chair and find the shows he like to watch on TV but sometimes something mysterious things would happen and the television would go off randomly without warning. When I would come in to investigate I would find he had his thumb over the off button.
He would put his water bottle on his walk and strap on his Fanny pack equipped with things to help if we had a "situation "...away from home along with his Parkinson's Med that must be taken at 8, 11, 2, and 5. (We both have alarms on our phons and tablets and watches...mine 5 min before his...just in case I need to track him down.)
He had his cell phone with a gps tag on it, wallet with ID, and emergency contact card. I would stand at the end of the ramp and watch them walk down the road in our senior mobile home park towards the clubhouse that's next to the golf course ... It's about 4 city blocks...and when he was out of sight I go inside and I remember having the same feeling in my stomach that I had when my children's first started school and how it was the first day of school until they were grown.
At the clubhouse restaurant He would order himself a short stack of pancakes or maybe an omelette a cup coffee and he would sit there and enjoy talking to and interacting with all the people who would come in. He loves to talk and tell stories and be the center of attention.
He would come home shining telling me all about who he saw what they talked about and I would listen to him and try to look surprised and interested even though the story was almost always the same one.
My father is an amazing man of courage and strength. He loves people, he enjoys being around them and cares about them. He is such a good guy and the best news is he still himself. He's just got some work to do and I know with your love, your prayers and well wishes he's going to be doing everything he did before soon. Thank you.
6 days ago
Not ready to share with family and friends. Neurologist today confirmed Multiple System Atrophy. Told us there really wasn't anything more he could do.
MRI showed Gary has already had a silent stroke. He is recommending cardiology follow up. Also suggested a feeding tube since Gary is choking so much. Gary said no.
I miss it being Parkinson's.
6 days ago
We just had Gary's Neurology follow up. Something he mentioned was an easy solution for DROOLING. He said normally it is only suggested by Neurologists for ALS and MSA. DO NOT try this without talking to your doctor ...
Over the counter atropine eye drops, a single drop under the tongue, will reduce saliva and help prevent not only drooling, but ulcers in the mouth caused by excess saliva and aspiration, also caused by drool. He suggested once to three times a day.
So, drooling isn't only gross, it is dangerous! Who knew.
7 days ago
Dad didn't have a good night. Came in this morning to hear he got no sleep! Was left wet all night and night CNA was not kind or gentle with him. He is not one to complain unless it's super bad...he said if he could have walked out he would have!
So heads rolled and I will be dropping in during the night shift tonight to see how things are going.
Good new no Med issues and a shower and PT will be the business of the day.
7 days ago
Ive been losing patience with my partner where I get to the point of yelling at him.i feel like im being taken advantage of , heck im not even getting paid to help him 24/7,I usually cant do anything for myself without him calling for me.im surprised im able to do this,.I feel terrible when I lose my cool., I feel like im a terrible person
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