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
White Stone said...
2 days ago
As we enter the crazy season in earnest I would like to wish you all an amazing and peaceful Christmas. I wish you love and days as carefree as possible.
Thank you all for being here for me and for each other - take care of yourselves you wonderful group of absolutely the best support crew any of us could ever wish for.
A fellow caregiver said...
4 days ago
I am an almost 65 yrs old woman, who has lived with my mom my whole life because of anxiety& depression. My mom is almost 89 yrs old, and gas Parkinson Disease.
My mom entered assistant living 3 weeks ago, and I suffer from incredible guilt, because I could no longer take care of her.
Is there anyone who is in similar situation, and how do you Cope?
Praying for a cure said...
6 days ago
Keeping everyone in my prayers, God Bless each of you that are caregivers, I thank God for Blessing my life with my wonderful husband Jack, I am so lonesome without him, i greatly appreciate prayer on my behalf for today and in the future. I mentioned to my family and friends if they wanted to do something special in REMEMBERANCE of my Dear Jack is to purchase a Bible and personally give it to someone at a homeless shelter or wherever he or she may be homeless with a note in REMEMBERANCE of Jack. Jack was amazing in doing all he could to be courageous and to push on with each and every struggle placed before him with this beast of Parkinsons, he would say, " God doesn't give up on me and I mustn't give up on God." He was strong in his Faith. It was after his fall and brain injury eight years ago, which brought our lives to change with his need of constant care, I was able to get him out and about in his wheelchair to do grocery shopping, etc. Never a thought to leave him with anyone, it was good for him to do so, I believe it really helped him to push on and not give up. It was the end of June, he wasn't giving up but he wasn't able to any longer get ahead of this devil of a disease. It is my prayer to anyone living with Parkinsons that he or she knows God loves you and with HIS LOVE HE WILL PROVIDE EACH THE STRENGTH WE NEED THROUGH ALL THINGS IN LIFE. GOD BLESS YOU ALL. PATTI
7 days ago
Well the last little bit of freedom and independence for dad and I is gone as of last night. Up until last night I have had the luxury of going to my counseling appointment or the store and dad would be ok. Anything less that 2 hours as long as it was between meds and meals.
I would always call to check in and I knew there would be some kinda mess to clean up in the kitchen or bathroom but dad would usually sit and watch tv and things would be ok. Well yesterday that all changed. I went to my counseling appointment and was gone for just over an hour, as always I called as soon as I got in the car to come home and asked him if he wanted anything, he said no he was fine. When I got home, dad was in the bathroom so I called out asking if he was ok, he yelled back yes, I could see the mail was on the table and had been opened, some of it was in the trash. I bent down to see that he had not thrown anything important away and noticed quite a few paper towels with blood on them and then noticed blood on the kitchen sink as well!
Now we have had an agreement for over a year that he won't use the back steps, he will use the ramp and he won't go outside if I'm not home. He did both and stumbled coming back up the stairs with his hands fill of mail and gashed a quarter sized hole in his arm.
I Lost it! Busted out crying and told him ok, that's it until I can get someone to sit with you I'm cancelling all my appointments and will pay extra for food delivery. His days of being home alone are over. He was mad at me and upset with himself. We didn't talk after that. I fed him dinner and said I'm sorry dad, but when you get hurt it hurts me too. Things like this make it harder on both of us.
I applied for a program that should start in Jan for respite. Until then I'm house bound unless my sis in law can come stay with dad and that's very rare. The ironic thing is he had his last PT session and was assessed for balance and passed. Right!
10 days ago
I started dating someone recently, and it was instant and felt different than anyone else. On our second date, he told me he has Parkinson's. I had noticed his hand shook once. Since then, i notice that he has a "lazy tongue" and chews on it. He also sometimes shakes in the night. He says the doctors say he has likely had it for about five years, and he isn't progressing..... YET. He is doing the boxing. He has a medicine he can take 3x a day, but he says it doesn't stop the disease.
Would you stay or get out now? I think he could be my future husband.
What is the long term life like for us?
Jamie T said...
10 days ago
I'm 41 and really feel like I'm a zombie. My partner fell pregnant five years ago just as I was about to leave her. I couldn't bear the thought of not being the child's father so did the "right" thing and stayed. Two years after the birth of my lovely daughter my partner started to get ill and was finally diagnosed with Parkinson's at the age of 44. I feel like my life is over. My partner is incontinent and we haven't made love for two years, I am so depressed I've stopped caring about my life at all which is making me ill too.
Tired and Sad said...
13 days ago
My thanks to Bobbiek and other fellow caregiver! Caring.com is so amazing... I find a safe place to voice the pain in my heart and soul. Without the grace of God, I won't have the courage to stay alive and relive the pain day after day. Good night, everyone!
14 days ago
Good Morning everyone! I'm new here and just want to tell you a little about myself/situation. I'm 46 and I take care of my father who has dementia/parkinsonism. He was officially diagnosed within the past 6 months. His dementia is what was first noticeable and that was about 2 years ago. I noticed he wasn't remembering what the docs would say when he had an appt. He was more paranoid than normal, always worrying about being scammed or having his identity stolen. I know those are valid concerns but that's all he would talk about every time I would visit him. He complained that he didn't like his doctor because he was new to him. His old doctor had retired. So I decided to go with him to an appt. and he had a valid reason not to like him. He was horrible. It was like he didn't care and had no patience for the elderly. The receptionist said it was a good thing I came with him. I didn't realize how bad it was. I don't live with him and visited weekly. I live really close to him but I also work full-time. Well long story short I eventually took over his medical care and all that, then next I started taking care of his finances. It seems everything started progressing so quick. Before long he was falling a lot, has a little chin tremor and makes a clicking sound with his tongue. He drools, has trouble swallowing, shuffles and freezes when walking. I have to help him with every day living activities such as bathing and helping him dress. He also is incontinent so he wears depends. He gets up several times during the night to use the bathroom but will still have wet depends besides. I work 3 12's and try to have my employer work with me and give me my days off grouped together so I can have him stay at my home to help take care of him. Otherwise he is at his home with my younger brother who doesn't work but doesn't take responsibility for much. He helps somewhat but not really as much as needs to be. I worry about him constantly when he isn't here because my brother isn't always around him or in the same room and my dad doesn't get the help he needs and struggles. I've tried to talk to my brother but it just leads to arguments because he takes it as if I'm telling him what to do. I have an older brother who doesn't live that far but he is married with two kids and works a lot of hours and says he doesn't have the time to really help. I'm so stressed at times because I feel like it's all left on my shoulders. I have to work and have a house I have to take care of and I don't have a significant other, and luckily I don't have any kids but that doesn't mean it should be only my responsibility. My dad never wanted to go to a memory care facility but I'm afraid I won't be able to keep doing this but I don't want to put him in a home either. I just wish it was all a bad dream and I could wake up and everything be normal again.
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