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
5 days ago
Well, on top of everything else this month, our washing machine broke down. I didn't need the expense, but bought a new one on the credit card.
Something new since I bought one - a sanitizing cycle!
So, while I hate having to replace the old set, having a sanitizing setting on both the washer and dryer makes me feel a lot better about all of the urine in my life!
6 days ago
Today was a crazy day for me. Bruce and I got up early today and went to town because I needed a haircut and a new pair of shoes. I got my haircut the first thing and everything was going fine. It was lunch time so I pulled into the parking lot of the diner we usually always go to. My husband was upset with me because I didn't ask him where he wanted to eat lunch! He was so upset his blood pressure went crazy! So, tell me, is this something else I am going to have to start dealing with?!! ( He has been having problems with his BP dropping dangerously low at times, I took readings of it the same time each day for a week and sent the results yesterday to his neurologist, but I've not heard back from him.) Now, every time he feels slighted or doesn't get his way am I going to have to worry if he's going to have a heart attack or pass out.! If so, I don't know if I can deal with this. I'm not very good at biting my tongue and holding my opinions in. Do any of you have the same problem with your loved one's BP?
8 days ago
OMG! Reading all the posts to me/ so sad that SO MANY of us are in this terrible position. And no one really understands unless they've been there. I feel that WHATEVER we need to do to allow us to continue to care for our spouses is OUR business and no one else's.. life is short, and I see how quickly mine is going by with so many years of sadness. It REALLY is tough/ God bless us all, and our spouses too.
nancy joan said...
8 days ago
Sleep is on my mind today and for awhile now actually. Cliff is having a lot of trouble getting to sleep at night - takes him until 2am or so to fall asleep. For awhile his sleep had been a little better - i.e. fell asleep more like at midnight and slept til 7. I'm wondering if PD has sleep problems inherent in it, and whether l-dopa, in folks' anecdotal experience here have found it to be a help or hindrance for getting to sleep.
He is trying valerian tea, melatonin, warm baths, not exercising in evening, not taking naps, not drinking caffeine after noon, etc etc - all the things we all know how to do. Worse comes to worse he can try an ambien on rare occasion but he does not like to take that very often - makes him feel even weirder the next day.
Overall the Sinimet appears to be helping him. But this sleep deprivation thing really is a problem for him. So I thought I would check in with you here. Thanks!
11 days ago
Hello fellow caregivers!
My husband was diagnosed 5+ years ago and I am finally reaching out to be able to vent before I have a nervous breakdown! He does very well physically, but recently I am seeing signs of mental struggles: trouble with numbers, remembering things. We own our own business and had our "annual business meeting " I have been trying to explain that we need to change things/slow down bc it's too stressful for me taking care of him, the household, the business, bookkeeping for both and now babysitting our 3 month old granddaughter. It actually went really well, but then the next day it was like it never happened. I was devastated. ????
I am tired, overwhelmed, and now really afraid for the future if/when he develops dementia.
His neurologist is a 2 hour drive away and appointments are 1-2 times a year. Only physical symptoms are ever addressed. He is resistant to any other types of help. He doesn't even have a PCP.
Ugh. Trying not to cry just writing this. :/
11 days ago
I am almost 63 dxed with PD and mild cognitive impairment since 8/14. Still stage one and not medicated. I feel that early retirement, diet (severe carb restricted) and regular cardio (30 plus minutes 6 days a week) have helped. But my wife and adult children don't seem to get what I am going through and/or will have to contend with as this disease progresses. My question to anyone with experience/knowledge is two fold: How do I get my family to realize I don't make this stuff up, that my brain is under attack, my mood, and cognition aren't going to get better? Number 2: Since my family is not much of a support group then who do you turn to? I haven't had much luck with finding a good local PD support group for myself nearby or on the internet. I am thinking of trying therapy to deal with anxiety, inertia and depression but my choices due to costs are somewhat limited. I need someone to talk to.- chas in CA
15 days ago
Well first I'd like to say that I hope everyone had a good holiday. Please wish us luck today. After hubbie gets home from work we meet with an associate of his urologist to discuss laser surgery on his prostate. It's only slightly enlarged (Psa 1.1), but he can't go on his own and is cathing 5-6 times daily. He's had a urinary problem for almost 20 years, but the PD has made it almost unbearable for him.
With that being said, we have a follow up with the neurologist at Rush tomorrow. Hopefully there's something they can give him to help with the use of his right hand (useless right now). His speech and walking really haven't changed much since I first joined this wonderful group.
All I know, is somethings got to give. Please wish us luck and keep fingers crossed.
For those in warm climates, enjoy. For those in the deep freeze, "Summer's almost here?"
I'll update everyone on Wednesday. Hugs
15 days ago
Ok.....so what do you do or say to your hubby when he hears and sees people with PD that are REALLY dependent on wives..caregivers and says DON'T EVER LET ME BE LIKE THAT!!!. Hubby just DXed in July and doing ok I would say.....But made me promise not to let him be bed ridden or in diapers....I just told him we would take it one day at a time. He said he would take his own life it it came to that...
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