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
Hi. Anyone in this group a small business owner? My husband and I moved across country last year. I am trying to reopen my business here (very different circumstances and challenges) but my love is now entering the falling down, urination incontinence at night, unable to fully dress or undress unless is completely loaded up with meds in him and even then can't walk any distance save the couch to the bathroom and back with his rollater. We are very fortunate to have help during the day during the week but it is becoming clear that mornings and nights (meeting and networking times) he should not be left alone. We need the money and I need the sanity and diversion my work would provide but I am so lost in thinking about making the right choices for him for me for us. I am not as confident as I once was- getting older as this process goes on. I am now 61 my husband will 76 next month. His PD is advancing hard on us. I feel no matter which way I turn I have trouble. Speaking with friends back home (no real new ones yet here) they don't get the challenges we all face. And who wants to burden them continuously with this never ending quagmire? I just thought I'd ask if anyone has been down this particular road....thanks for listening.
After reading some of your posts, I don't feel so alone in all this! My husband was diagnosed when he was 53 after developing a slight finger tremor in his left hand. Tremors eventually showed in his left leg and he has been on carbidopa/levodopa and requip as well as flomax for years now. Lately his symptoms have increased:: the weird dreams, left foot moving as if to the beat of music when he is not aware of it, impatience with things, drastic fatigue when doing something strenuous. As it is, I have to do all the things that involve fine motor skills, good vision, and strength. Although I have learned alot about doing our own car repairs etc! My husband is 68 now and is still working at the job he has had for 47 years. It is getting more difficult for him however and he is now talking about retiring by the end of the year. I will probably go insane if that happens! And I really don't have anyone to talk to other than my children about all that goes on. So I can really relate to some of the posts that I have read on this site tonight. Thank you.
Its been a long time since I wrote on here. Some of you may remember my last post after early March this year where my brother took my mom out of her 120 day rehab and changed all her poa, emptied her acct etc. Now hes got me charged with a new law for exploitation of the elderly, a 3rd degree felony, claiming every charge on her bank account and her credit card was all fraud by me. The law is such a broad 1 that it's hard to save myself even though I never defrauded her out of a dime. Now I have had to lawyer up. I don't trust that if I tried talking to the DA, they wouldn't twist things around. They threatened to come arrest me in front of my kids if I didn't go turn myself into jail. My brother is a cop, so he reported it to his department and forwarded to the county SO I live in. I'm simply telling you all to warn you. I'm in TX.
Urgent alert!!! If you look at other groups you might have seen posts mentioning NATURAL HERBAL GARDENS. It is a scam!!!! They prey on people who are suffering. Do not fall for this!
Well, hubby had check up and now has to have MRI of his brain and EEG. Having issues with low bp. He is also continuing to loose weight even though we eat and not that healthy either. Its gonna be a long 28 days. That's when we go back to get results of everything. This year has sucked!!!! Prayers please. Hugs to all
Hello everyone. Hope everyone is doing OK. Been awhile since I've posted anything. We are almost 3 yrs into this. We have an appt with my husbands neurologist on Friday. My husbands progression seems to be moving right along. The has been having dizzy spells. He has been having them for over a month now. He went to cardiologist at the beginning of the month and spoke to him about it. He decreased my husband bp meds to half. Which I started immediately. But still no change. He continues to loose weight but none of his doctors seem concerned about that. His memory is getting worse. And he is noticing all this. I am trying to get things in order but its all so overwhelming. How is the progression of this disease tracked? I know with my RA its done with blood work and xrays. I know I could probably find it on the internet but to be honest I'm tired!!!. Its hard to try not to be patronizing or talk to him like a child, or reassure him I'm here for him. But he wants to know who's gonna take care of me while I'm taking care of him. Bless him. Well hang in there everyone! Hugs to all!
Hi everyone. My mother, who just turned 68 last week was diagnosed with PD on Friday. We are in the middle of packing her up so she can retire down in SC to be out of the cold winters up north, and live near her brother. She lost my Dad 10 years ago, helped raise my sister's son and really has never had time to focus on herself. I was so excited for this next chapter for her until this happened. She has had a tremor in her hand the last year or so (not consistently) but finally got it checked out a second time. The first time it was checked out they were not concerned (her mother had it and was never diagnosed with PD). I know every case is different, but I feel like I am going to break down every second. I cannot lose my Mom. I'm just beginning the research that I need to do for this disease but I don't' want to make her feel like she is not allowed to live her life and enjoy this next chapter. She got into going to the YMCA this year and loves Zumba which I know exercise is great. She isn't someone that will look for support (unless it's from me) and hates to be a burden. I'm freaking out a little and just want to be the biggest support system for my Mom. Now she's moving away and I'm panicking. I know every case is different but I can't lose her yet.
about 1 month
My husband is 59 and was diagnosed with PD at age 48. I am 53. I have looked at but not posted on another online suooort group, but it is past time I did. I need advice. He dragged himself up and to work for the last ten years and would never have quit. His kind boss finally talked to him and said he needed to “retire” and is paying him two years of partial income. Which was awesome. He has the usual physical symptoms- shuffle, freezing of motion, soft voice, odd word choice, poor balance, etc He also is slipping about grooming - shaving, clipping nails, asking me to cut his hair, etc he always was a procrastinator by now it has gotten insane. He hasn’t done his taxes from last April he cannot file for disability unless he does them. He gets mad when I remind him to do it or ask if I can help. The worse stuff too is he has had hallucinations and some paranoia for the last 2 years. Spiders, people in the yard, people shooting laser lights at our house (lights on neighbors trees), people squatting on our land, people in our bed. His mom is dying and I am sure that makes it worse. He is waking me up during the night saying we have had tornado winds, bells ringing, and people in our bed. Last night he looked so scared when he called me to his room (he had been sleeping with me last night) and said there were 2 people in bed with us. I had to get my apnea machine and go to his smaller queen bed to sleep. He also thinks the solution to all of this is to hug and cuddle or be physical 24-7.no amount is enough. I do all the chores and bill paying and arranging to get things repaired ... he spends the day slowly taking care of himself. And dozing off as he tries to work at his desk. He is in denial how bad it is. We need to sel this lake house and boat and get to a house appropriate for a wheelchair and bigger shower, wider doorways etc.... he refuses.I am at my wits end.
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