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
1 day ago
I am trying to figure out how to have a discussion with my husband about long term care and funeral wishes. A few questions I have are: do I need a power of attorney for finances if we have a joint checking account and he has either given authorization or I am named on our household bills? Also as his wife does my decision trump any other family members on final arrangements?
6 days ago
Dear friends, if I may paraphrase a favorite poem ," Vince has slipped the surly bonds of earth (and Parkinsons) and danced the skies on laughter silvered wings, and ........hopes to touch the face of God." He left us very peacefully after a valiant battle with PD. Our son was here with me when he passed. He weighed less than one hundred pounds by this time. It is a blessing. In the Air Force he used to sky-dive and was at one time a competitive tennis player. We climbed the Grand Canyon together and rode our horses across the state of Michigan. I grieve that man, but would not wish him back. Thankyou all for helping me through this journey.
8 days ago
New to this. My husband was diagnosed with PD in Jan.2016. He has been showing signs of memory loss. I mentioned this to neurologist at last months visit and he says he doesn't think he needs any added medications and he will see him in 6 months . all of this is frustrating and not sure what to look for or to do to help.
Mama wolf said...
12 days ago
This is a long...drama filled (I HATE drama....) basically letting off steam rant. You have been forewarned :-/
Last night was a hard night. Possibly the hardest yet. I know this isn't a support group for PTSD or VA issues but they all play into the issues with Parkinson's in my and my husband's lives. Randy's cognitive issues with remembering things is taking a huge tole on me. You can't disagree with someone that doesn't remember and Heaven help if you try to explain the reason they can't remember is due to PD and PTSD. The VA does not help with their constant changing of doctor appointments and us not finding out until they send snail mail notification letters which cross each other in the mail not necessarily in chronological order.
With all these C&P exams for the 9 PD symptom claims I had to reopen when I filed the massive PD claim, coupled with snail mail notices and the VA's insane reasoning in demanding a review of Randy's current PTSD and Sleep Apnea compensations things can get real confused real fast even on a good day with no memory issues. So bear with me while I try to explain:
I came home yesterday to Randy on the phone attempting to make an appointment for his C-Pap regulating that was requested on a snail mail letter received yesterday. I was fine with that although the standard letter is confusing in that it has information on it that has no bearing on why it was sent such as stating "*lab tests needed before making appointment" which immediately confused him, I looked all over the letter for an * denoting which appointment and which tests. There was none so I assumed this had no bearing on his making an appointment to get his C-Pap regulated, nor did this particular letter have to do with the compensation for his Sleep Apnea. I assumed it is just time for a regulation check on the machine to maintain proper air flow for Randy's personal C-Pap settings.
Then I hear him talking to the scheduler about rescheduling a Neurology appointment the end of June that I had recently scheduled due to the VA shuffling clinics around making our previously scheduled appointment null and void. This is an extremely important appointment to review his current Sinemet prescription dosage. I looked at him and yelled stop...wait...what are you talking about? I grab the calendar and tell him to tell the scheduler to hold on. He starts getting flustered, I am reviewing the calendar and am confused because we had already rescheduled this just a week ago. So I finally tell him to let me speak to the scheduler. He reluctantly hands me the phone. I figure out that in his attempts to schedule the c-pap the scheduler was telling him the list of appointments he had and that he needed to reschedule the Neurology one because yet AGAIN the VA decided to close that clinic that day. I tell the scheduler how important this appointment is and that there is NO WAY he is coming without me due to his memory issues. I can't come the date she gives open because I will be on a business trip to Texas that week. So she tells me she will have to consult with Neurology and we will most likely NOT get our current doctor but someone else!!! I am flustered at this point so I explain she has GOT to call ME on MY cell....not the house phone or Randy. I should get a call today but I am going to attempt to contact them ASAP as I do not want Randy running out of meds or not having the right dosage.
Then I get off the phone and realize we never made the c-pap appointment so I call her back and she says that area is closed and she will let them know to call me tomorrow or Friday. We are trying to get it the same day...next Wednesday...that his dry eye C&P exam is so he doesn't have to take another sick day. When I get off phone Randy keeps telling me the sleep clinic is a different department than Neurology. I told him it clearly states on the letter it is for Neurology...sleep apnea is a neurological condition and the Sleep clinic is a part of that me area. He KNOWS it is the same but this is one of those learned things he forgets. I told him there is obviously a cancellation letter on its way in the mail to us about the PD appointment. He also informed me that he never knew we had the June 30 appointment with Neurology when I know for a fact I showed him the letter and had him put the new date on his calendar which was indeed there. When I point this out he continues to say he didn't know. I swear I feel like a "Who's on first" joke when I try to discuss things with him. It is like a dog chasing it's tail.
Well at this point I loose it because he keeps trying to say he didn't know and why didn't I just take care of all this. I looked at him with my mouth open. Gathered myself up and told him from now on I will make ALL his appointments. He is NOT to talk to any VA employee about appointments and of course it is all my fault because I didn't miraculously know before I got home that he opened a letter and got on the phone. I told him whether he liked it or not, whether I liked it or not, HE DOES have PD and PTSD and that means he DOES HAVE MEMORY issues. It is a fact we both just need to wrap our heads around and get used to and he needs to STOP blaming me for everything. He leaves the room and comes back and actually apologized (this rarely happens) but then went into a cussing rant about how F**ed up and sorry the VA system and all involved are.
So now I will step off my soapbox and ask you all ...especially any that have to deal with this type scenario...HOW do you deal? I am a strong independent woman that has before and can again deal with a massive amount of stress and crap in my life. But I fear his memory issues are going to be the end of me. I can't argue with or remind him because he simply won't remember and will think I am calling him a liar. Again the combination of PTSD and PD is a massive monster I don't know if I can ever control much less conquer.
Mama wolf said...
16 days ago
Husband is a Vietnam veteran. I have been trying to get the VA to realize he has Parkinson's for several years now because of Agent Orange. They finally agreed he most likely has after the carbodopa-levodopa given to him by his VA GP stopped his resting tremors. We are in process of filing a compensation claim with the VA which is a whole other story. I come here today seeking support for myself. My husband's symptoms are not "typical". It took a while for tremors to appear. His started with frozen shoulder, stiff and painful joints (2 needed hip replacements later) continues to have joint pain and stiffness. He began drooling, lost facial expressions, and the part that is hardest for me to deal with is his apathy and faulty memory due to cognitive issues. This man is a 64 year old big teddy bear gentle giant. But now he seems more like a robot. There are days I see the man I fell in love with but most of the time it is like living with a stranger rather than my spouse. He gets frustrated if he thinks I am upset or sad. I am simply lonely and miss my man.
I will always be here for him. But as the cognitive issues and apathy increase I see a lonely life ahead for me without some type of support to help me deal with it.
18 days ago
Hello! I am getting married next month and my future father in law has Parkinson's. My fiance and I have been together for 11 years and it was in the first couple years of dating that his dad was diagnosed. He was told multiple times if he continues to do x, y and z he won't progress so quickly, but really did nothing. He has been retired for about 2 years now and it was not his decision to leave. He has progressively gotten worse since retiring and between December 2016 and the February 2017 spent time in the ER and then rehab on three separate occasions.
I moved in with them at about the time that he retired and my future mother in law and I pretty much split the care. It's exhausting to say the least. No matter what we do he doesn't change. He'll leave rehab with a "renewed outlook", but within days goes back to doing nothing. At the last ER visit the doctor said he's basically given up and that its our fault that he doesn't do anything. It's so frustrating when you do so much for him and pick up all the slack for what he won't do anymore and then get blamed. He's also increasingly mean when we try to help. His wife gets the brunt of this, but I've gotten it a few times. He has very few responsibilities at home and it's difficult because that's more reason for him to do nothing and more that gets put on us.
Anyways, we were talking with our wedding officiant yesterday and discussing how frustrating it is to get nowhere. She suggested a support group and I don't have time between work, home life and wedding stuff to go to a meeting in person. I'm happy to have found this group. Thanks for letting me vent!
Susan Vannan said...
21 days ago
My husbands parkinson comes with great anxiety. It keeps him in bed, limits his joy about visitors, eliminates his use of the phone, places me in total responsibility for bills, finances, home care, etc. He is on an antidepressive med which they say works for anxiety. He cannot walk and it frustrates me that I can't get him out of the BR very often. He has no hobbies, watches TV only. Is there something I am missing. I have learned the nursing skills, but I wish there was something else I could do to activate his mind and his life? Susan
24 days ago
Overwhelmed!!! Ron is having severe blood pressure crashs. Means he is in great danger of falling. Sometimes he realizes it's happening others not.
We are working with his MDD and cardiologist for an answer but so far they are both stymied as to the cause. Meds adjusted, cane and walker in use etc.
But me? I live in constant awareness & fear.
He is a big fall risk. Osteoporosis means a bad bone brake. Meds for aFib means a big bleed risk, especially his brain.
I am on high alert every minute. Where is he? What's he doing?
How much do I stop him from doing things and interfere with his independence.? Don't want to force him to sit and deteriorate. I can't leave him with anyone who doesn't have the physical ability to catch him and get him sitting. Can't leave him alone to even go outside. Yesterday I was in the shower when he had an episode. I'm cold, wet and naked with soapy hair while helping him sit. My adrenaline is running on high. So my fibromyalgia is acting up big time. We have parked our RV near our daughter. I know in her heart she cares and wants us nearby. She has good intentions, but she has a part time job, a business to run and a little guy who has sensory disorder issues which require her time and attention. She wants us in an apartment near by. Yea it's handicap accessible, yes it's inexpensive but my heart hates it. Small dreary etc. It's been raining and cold all week which emphasizes that I don't wNt to be in PA all winter long. Lord this is a long post!!! To many life changes at once. people around us can't just let me vent or cry. I've always been the strong fix it person for others. So the kids don't know how to react to me. Other either don't want to hear it. They want to tell me what I should do. My sisters ask me out but I can't leave Ron. I hate this. Thanks for listening.
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