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
How do you prevent toilets being destroyed by your Parkie who falls constantly? (Or what's next?) We just installed a high capacity (or whatever) toilet to deal with constant clogging from constipation about 2 months ago. We even put in support arms that brace on the floor and a towel rack behind it with shelves that prevents the upper back from touching the tank. (Nothing prevents the lower back area from collapsing into the tank though.) Last night my husband managed to break the tank. I'm wondering if others have encountered this problem and have found a solution that works. Ideas?
The PD is taking over our life and I am so frustrated.
I am starting to get an attitude with him and his behaviors. I find myself, yelling, pleading, begging, crying, demeaning and even exploding on occasion. He will not follow his medication schedule, sit back in his wheelchair (falls out forward), gets up and proceeds to try and walk and falls. He is supposed to self cath at a minimum 4X/day and maybe empties 2X. He screws up every TV in the house by clicking like a crazy person. His speech is so bad I can hardly understand a word so I just tune out. The amount of energy it takes to figure out one sentence is exhausting. He will not go anywhere and wants me home with him all the time. My girlfriends come over because they know I'm trapped and he will interrupt, pout if not getting enough attention and draw attention to himself in negative ways.
I am married to a 3rd grader and feel like my health and personal well being is being compromised. My sister and I are going on a 2 week vacation soon thank goodness. If I didn't have this to look forward to I would die.
Thanks for listening. I have a long haul ahead of me having spent the last 23 of a 30 year marriage chained to PD. I love my husband and wish him nothing but peace. I can no longer be in love with the man I married. This is very hard for me to admit and brings me to tears.
Merry Christmas to all of you. It is kind of sad this year. Hubby had two strokes two years ago and lost his memory, he recuperated up to 80% but between the Parkinson very advanced and the two strokes things are getting difficult. He is extremely tired. Up to last summer we were able to do very small trips, we went to the beach and went to see my family in New Jersey. This year, he is so tired. I have hired helped very often and that helps, however, the emotional part is difficult. I feel I am alone like a widow without being a widow and with all the responsibility. Today he had has children (this is the second marriage and it has been a good one) for a pre-Christmas and had a good time., but he got tired immediately and didn't say a word to anybody. Tomorrow Christmas Eve we always go to my son inn Charlottesville (2 hours from here) and come back the following day, but because it is very difficult staying in a hotel we will come back the same evening. It is a bit more difficult, but not impossible. Some times he said he wants to stay at home and I do have a person that will stay with him for a few hours, It is very difficult. Of course Christmas day we are having some friends here at home for a late dinner. I feel like I am in a roller-coaster, anybody feels that way???? Thank you and God bless you all. Without Him I can't do anything
about 1 month
I am a 67 year old man in a 15 year relationship with my love who is a 68 year old women. About 10 years ago, she started a series of health related issues that have made daily life much more challenging for the 2 of us. She started with a tumor behind her right optic nerve. Went through radiation treatments that killed the tumor (dormant for the past 6 years), but she ended up losing the use of that eye (very manageable). About the same time she developed Fibromyligia and has constant pain. She has a few meds to help, but limited success. We have recently started Medical Marijuana which we were hoping would be the "magic pill", but have only found minor relief so far. The she was diagnosed with PD about 9 years ago and has had a slow progression of the disease. Tremors are mostly under control, but she is having balancing issues (has fallen many times, two resulting in broken bones and one in 10 stitches). She is also having swallowing difficulty which makes taking her meds more difficult. Most recently she has been diagnosed with Cardiomyopathy. She has an ejection fraction between 30 and 35 with a leaking mitral valve. Our cardiologist says she is not a good candidate for a valve or heart replacement. We did go to the Cleveland Clinic for a 2nd opinion, but basically were told the same thing. We are now scheduled for a 3rd opinion with the PSU Hershey MC cardiology dept. I ended up retiring early last January to become full time care giver. Even with the extra time, I sometimes feel overwhelmed. She has two adult children, but neither have offered any type of assistance (I have hinted, but maybe not strongly enough). In fact, her daughter has changed our routine of seeing her two grandchildren almost every Sunday to us rarely getting to see them. Those 2 grand kids were the source of our greatest joy, and now the situation has created a source of friction with her daughter. My spouse is dealing with severe depression and anxiety (on meds for both). I am getting depressed also with life's unexpected changes. I did just get a 2 day weekend away with my best friend to go to our Alma mater to see a basketball game when one of her close friends offered to stay with her while I was away. It was such a welcomed respite and I couldn't stop thanking her for her help. I am just starting to look into Caregiving Resources and this was my first one, so posting this not knowing if there are any other thought or suggestions?
about 1 month
Hello- my husband was diagnosed with PD over 14 years ago. Young onset, he’s only 66 now. About 2 years ago he had the DBS surgery. Since then he has become addicted to porn, which is bad but more recently started sending money to strangers. Money we don’t have! I’m at my wits end trying to figure out what to do!
about 2 months
Hi guys. I just asked a question the other day about having a cat around. On another subject (sort of), does anyone have a service or companion type dog for their loved one with PD? I thought I found a place, but then I realized my husband (who has the PD) needs to get out with the dog 3-4 a day and feed and brush the dog etc etc. As some know...a dog is a lot of work! So my husband can't do that. He's getting on a new med, but even with that going, I don't think he can take full responsibility of taking care of a dog. Then I think, well, why not a regular sweet dog from the pound or a rescue? But that leaves most of the responsibility on me and I'm not quite sure I'm ready for that. Maybe a completely trained one O.o
Well anyway, any comments? :D
about 2 months
You guys got any knowledge on how to get rid of bronchitis other than: Exercise, sunlight, lots of water, soup, diffusers with oil, acoustic back rubs, good nutrition? Last year it too DH 3 Months to get over bronchitis until we stayed home from socializing for an entire week and did all the above. This year I did all the above immediatly after he developed bronchitis and he hasn't licked it yet! I took him to ER a couple days ago because he sounded so bad AND had a fever (and after learning at a check up that his oxygen was down to 92). They put him on antibiotics, even though we are pretty sure his lungs are not infected. (TMI) ANYWAY, have any of you invested in some types of devices that help those who can't cough or sneeze (like my DH)? And did they help? Thanks in advance....
about 2 months
Hi, my son who has Williams Syndrome is 22 and he's been wanting a cat for a long time. My husband has Parkinson's. Do you think a cat would be a good idea? I don't want husband to trip over him/her.. I'm thinking maybe we'd get an older cat...I guess that could make a difference. More mellow? What do you all think? TIA Meg
about 2 months
Please may I ask you if you have had similar experience. My husband has always had a big temper but now when he gets frustrated or very anxious he makes terrible threats like splitting my head in half or cutting my throat. Is this part of Parkinson’s? It on,y happens when he is very upset. I know he has Parkinson’s because I can check off all of the other motor symptoms. However, he refuses to see a doctor and has extreme fear of doctors. Therefore I can’t get the help he needs. Please any insights will be welcome. Thank you so much.
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