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 23 hours
Good Morning. It is time for me to pick up my husbands medication. We have been without health and prescription insurance since June. He was just approved for Medicare but doesn’t have any prescription coverage as he is in the “donut.” I’m still looking for work but don’t know when I’ll find one. Are there any programs that will assist with Parkinson’s medication? Thank you for any advice and thoughts. LuLu-Shaw
What do you do when you feel like you want to run away from home. I know from other posts that some of you have a much worse situation than I do but somedays I just feel that if one more incident happens I will sit down and cry. Not only do I have my husband with Parkinson but also have my mother in law who is 95 and my uncle in law who is 94. I feel like some days I have three very dependent defiant children living with me.
An anonymous caregiver said...
I'm new to this group. My husband was diagnosed with early onset PD 3.5 years ago and we are both 45. For the first 3 years, we managed quietly...only told a few friends, both attended dr appointments, he stayed busy with work but did rejected any of my advice or encouragement on exercise, slowing down at work, etc (would get angry when I suggested things). In the last 6 months we have hit a marital crisis. He is thinking about leaving me...says isn't happy and maybe never was happy? Maybe he only has another 10 years and maybe there is happiness out there for him. Also, saying things like when things get bad he would leave me and the kids anyway - would never want us to see him bed ridden, needing help to eat, etc. He wants to be alone.
I'm shocked and devastated. I can't believe that he was/is not happy. It feels like its the PD pushing me away. We went to couples therapy for a few sessions but he wanted to quit. He has been seeing his individual therapist.
Has anyone experienced something similar? Any advice.
So, I'm new. I'm 44 as is my husband
My husband was diagnosed with early onset PD last year after developing a limp and a tremor over the past few years. He lost his sense of smell in his late 20s, his handwriting became ridiculously tiny around the same time and he began to have some constipation issues in his 30s, but assumed it was hereditary.
Our GP was sure it was benign essential tremor, but referred us to a general neuro, I think to shut us up. He did a brain MRI and told us to come back in a year. We did and he said he still didn't think PD, but referred us to a movement disorder neuro. She did a DAT scan and hello Parkinson's diagnosis.
He broke his tailbone falling on ice in December 2016 and suddenly his ability to walk went from kinda shitty to impossible. He has regained some, but his left foot drags, but it's not nerve damage, it's not dystonia, it's not spinal, it's not anything that can ever be tested for because we have had all the tests and been to so many specialists. He did a few months of PT with no improvement, he went on Mirapex and there was sudden improvement. Part of the walking issue seems to be some sort of psych issue, more than just stress and anxiety making symptoms worse. Every doctor says his walk is not typical for PD. But no one can tell us how to make it any better, either. He is using a rollator at work, and he takes forever to move around right now. He sometimes uses a walker at home, but rarely. If we want to go on a big date, we have a transport chair so I can push him. We do this for concerts and that sort of thing.
I am just...so tired. And terrified. Constantly terrified of him falling, of the progression, of how the hell we can pay for all of this, of what happens to our coverage when he can't work any longer? And angry. We went through several years of infertility and losses before becoming foster parents in 2016, and last summer we had to close our license because he literally cannot care for a child in the state he is in. And I don't blame him for getting sick, but I am so angry about all that we have lost as a result of it.
And the pee. Holy crap, the pee. He is furious that I suggest he sit to pee. He will not do it. He will not wear a pad to catch drips, and forget wearing a Depends completely. Everything just smells like pee all the time. He had a gastro bug in September and every time he fell asleep he pooped and still would not wear the stupid diaper. He just lets me clean it all up, cries about how terrible it is, but won't take any steps to make my life easier. I am going through biokleen like crazy and still everything smells.
I just feel lost and mad and I don't even know any more.
Hello Ladies..been awhile .... don't know where to begin...I have so much ANGER....mad at the PD..mad at hubby..just MAD!! Mad at insurance companies!! He wont listen to me or the dr's...they tell him to drink more water...won't do it....don't climb a ladder...he did. He cut down a tree with a chainsaw and a ladder!!! I seen him fall...thank God he did not have the saw in his hand...I am trying to keep it together but it is hard!! He has been in the hospital for pneumonia after I beg him to go for a week...now we are dealing with fecal impaction!!! Just so tired of trying to keep it together and keep him happy....what is for lunch...what is for supper...is that all you got..I don't want that...BLAH BLAH BLAH!!! UGH!!! Thank you all for letting me vent!!
Hello, I am new to online support. My husband has had Parkinson's for around 10 years and three strokes. The changes he (and I) are going through are difficult. We are experiencing problems with Ropinirole. I believe that it is causing him to be hypersexual! If its not that I don't know what it is, but it's a problem for me! I'm having trouble switching from caretaker of everything to "sexy". I need help, this is causing a lot of tension in our house. I've spoken to the neurologist with no help from him.
Looks my husband's Parkinson's/Lewy Body Dementia trip is coming to an end friends. Please pray that he may have an easy transition from this life to the next. It has been a long, hard road. I am both sad to lose my partner in life for 46 years and happy to see an end to his suffering. Bless you all.
An anonymous caregiver said...
New to the group... my boyfriend has recently been diagnosed with motor control disease, a sub set of ALS or Parkinson’s. I don’t know what I’m asking for really... I guess any information on what may come and how drastic is this going to come? They gave him 2-5 years. His body has become weak and muscle are deteriorating. I’m very scared for him and just want to make him comfortable.
White Stone said...
about 1 month
I haven't had time to even log into this Support Group for some time so I greet and hug all of you during your troubled times.
My husband has recently been experiencing oedema in his legs and feet. All the necessary tests were carried out to check for left ventricle heart failure, liver or kidney disease. All results were clear. GP passed a comment that this was just another Parkinson's "step" - I will make an appointment with the neurologist who will have these results as well by now and see what he thinks we can do about this.
Anyone else with these problems? Apart from water tablets we have not been given anything else. He is taking 1/2 a Frusemide in the mornings when needed and wearing travel compression socks.
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