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 7 hours
Hi I was diagnosed with Parkinson's last November and am tuning 50 next month. I live in a remote area with few supports and no local support groups. I have considered moving to a larger centre with more supports and resources but that would also involve relocating my mother who is due to have a knee replacement in late May. As I am her main support person and also the main support person for my brother-in-law with pancreatic cancer I am feeling a bit trapped into staying where I am. I am trying to sort out the meds with the support of my family Dr and local pharmacist. Not sure if the dosing is right. I am due to see a neurologist in late April (this will be my first neurologist appointment since diagnosis). I'm feeling a bit lost and alone - although I have told everyone the diagnosis there's no one who I can really talk to who's gone through/going through it. I'd love any thoughts, suggestions, coping mechanisms, encouragement etc
about 9 hours
My sister was diagnosed with Parkinson’s Disease 6 years ago. She has had many challenges with medication and is now believed to be receiving too much Leva -Dopa which is causing Dyskinesia & Dystonia. She has become severely depressed (is taking Efexxor but benefit is questionable. It was just reduced d/t manic behavior. We as a family are struggling with changes in her mood, irritability, paranoid, perseverative thoughts, distortion of facts. She does not allow anyone in the family to talk to each other about her without her. She is not respecting boundaries ( calling people at ork). She has a therapist but won’t allow her family to attend. How do we deal with these behavioral symptoms when any confrontation causes her to cry and have dystonia.
My husband was just diagnosed with young-onset Parkinson's last week. He is 44 years old. We have two young daughters- 8 months old and 2 1/2 years old. Does anyone have experience with young-onset Parkinson's and the progression? What will I likely face over the next 5 years?
He is also not willing to share this news with any of our friends and family. This is devastating to me as I need to talk about it and built my support network. Did anyone else experience this when their loved one was diagnosed? I'm not sure what to do except follow his wishes, but I'm afraid my resentment will grow by having to keep this secret.
I'm thankful to find this community.
I'm engaged to a man with Parkinson's. We have been together for a year. He told me about his diagnoses on our first date. I was surprised because there were no super noticeable symptoms at the time. They've gotten slightly worse since then. We recently moved in together. I can see now how much he's struggling but he will not open up to me about what he's going through. He is very stubborn and prideful and I love that about him but I also need him to let me in or I'm afraid I won't be able to help. I'm so frustrated! He leaves for days when he's having a hard time. That makes me want to run Too!
Hello everyone, I am the caregiver for my husband who has Parkinson's Disease. I am suffering from severe anxiety and depression. I am having trouble dealing with this disease. I feel bad when I leave him (with someone) even when I know I need the time away. Guilt is overwhelming...
dog nane said...
Hello, My husband of ten months was diagnosed right before our wedding. He is 52. I have noticed a big change in him just in ten months. He has decided to forego the meds for now because he is extremely anxious about any side effects. He is starting to get back and neck stiffness and is complaining about it alot. Went to doctor this week for follow up. Doctor said more than likely it is the PD and that the meds can help that. My husband still won't take them. I can feel resentment creeping in and I don't like myself for it. Anyone experience this?
We are going CRAZY trying to figure out the meds.....Dr wanted him to take a med that insurance did not cover....way to expensive. So did some research and found an older one that was a lot cheaper with a good RX coupon we could afford......but hubby is falling asleep all the time. I mean ALL THE TIME!! He quit taking the new med Saturday...... Bottom line everything we have tried is not working....he has no motivation to do anything...sits in the recliner more than not....when we increase any med or add any med all he wants to do is sit around which makes him sleep on and off all day.....then he can't sleep thru the nite!! He say's he has fatigue..I know this is true...but I try to tell he if he sits all day he will be fatigued....I am going CRAZY..it is a vicious cycle. To tired to do anything..doing nothing makes you tired!! Also I am sooooo tired of this being are only subject of conversation!!! Call me a bad wife....I told him I don"t want to hear his every ache and pain. his every.bowel movement ....I love my Hubby!!!!! But he is really taking this BAD!!! DEPRESSION!!! I can't shake him out off it!! He is very able bodied for now!! I want to be treated as a wife not a caregiver yet!!
Yesterday the electricity was off briefly, so all the clocks started blinking. My dear husband, who used to be renowned for being able to take apart, fix, and put back together anything, insisted to me it was because it was March first and no longer February, and therefore all the clocks needed to be reset.
Lost in Florida said...
Getting house ready for handicapped person without spending a whole. We bought a narrow transport chair a/k/a wheelchair, narrow walker so both could pass through most doors. We also purchased raised toilets and put handrails around them, put up handle bars in bath area and a shower bench chair that had a back with arms rails on one side. This has helped immensely and I wanted to share this in hopes it may help someone.
The RN who does evaluations at the rehab facili where my mom's at, called me yesterday and said my mom's still not fighting off the UTI. They've given her antibiotics twice and IVs twice to rehydrate her bc she's only eating 25% of what she should and not drinking. She also said mom's kidneys are looking worse. She's had kidney disease stage 2, last I know of. I wasn't with her when that was found, bc she didn't live with me then. I asked the neurologists nurse about hospice like guys said and she said it's tricky bc the Dr has to believe she only has 6 mos or less. But the RN Michelle said it's looking like an end of life situation with mom, so I called the social worker at the facility and he said he's putting me in touch with a hospice friend of his that helps them there, to answer my questions. I really need the help so I hope it works out. Mom's hospital bed hopefully comes through with Medicare. The neurologists nurse is working on that. Sorry for the rant every few days. I'm just trying to prepare for all I can but that's hard when you don't know what lies ahead.
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