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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

MickeyA said...

3 days

Hello to all. I’m sorry not to have been supportive to you. I’ve been very depressed. My husband has Parkinson’s but refuses to get medical attention of any kind, with the sole exception of his psychiatrist since he provides script for antidepressants and anti anxiety medications. He’s getting worse and worse in so many ways. I know that some of his issues could be at least temporarily relieved by medication and exercise, but I can’t force him to the doctor. He blows up and threatens me. Does anyone have a suggestion how to get through to him? Thank you so much

Tajz said...

2 days

joyanne said...

6 days

It has been a long time since I have posted on this site. The struggles with PD became so overwhelming, and I tried to turn as much about PD off as I could. I hope all of you will not hold my lack of support for this site against me. Everyone deals with their situations differently and for a while I just wanted to put my head in the sand and deny the pain. I can tell you right now it didn't work! You can not talk about it for a while, but it is still there. The monster gets meaner and nastier as time goes on. I hope I can truly offer some of you words of encouragement and maybe a little bit of advice that experience as a caregiver has taught me. I am glad to know Marshmallow is still with this support group. She went through some really hard times with her husband, and I am sure her knowledge and experience of the disease has been a valuable asset to all of you. My husband was diagnosed with this disease in 1989. So, if you add the years before his diagnosis, he has had PD for 30+ years. It has been a roller coaster ride for sure! I would never ever wish this disease on my worst enemy. Not only does it take a toll on you physically, emotionally, but also financially. I have tried to keep my sense of humor about it all, but frankly, lately it has been hard to do that!. We are both getting tired and worn out. It seems we all share many of the same struggles--just different situations. Family and friends who actually help us with our struggles are few and far between. I think a person has to experience the effects of PD on a family before they truly understand how destructive it is. Try not to be too discouraged about their seemingly uncaring attitude because they don't have a clue what we are going through;. It hurts I know, but I have found that it has made me a much stronger person. I have learned to do things I never thought I would ever have to know. I can change a belt on a lawn mower, tow a 16ft utility trailer loaded down with farm equipment through the busiest town in Arkansas, crawl under the house to thaw out plumbing, and all the while gripe and complain that "I didn't sign up for this job when I got married!". I pray everyday that God will grant me the strength and patience I need to be a good wife and caregiver. Some days I fail miserably! The way I see it...my husband will have to take the bad with the good. I am looking forward to reading and posting again in this support group. Hugs and prayers for you all.

Lovey1103 said...

6 days

joyanne said...

6 days

6 days

Mum isn't as close to her grandchildren as she was and she can't see that she has changed. She keeps asking me what she's done wrong and thinks they won't miss her when she dies. The younger boy is very affectionate and the elder boy is also caring but less expressive and more reserved in character, so although he must have some grief over loss of the person his grandma used to be, she can't empathise with this and just wonders what's wrong with him. She also often forgets all the caring and affection I and my boys show to her. She is often good company and no different from old times but then she becomes quite different and confused and it's like she's not there for a while and I have to wait for her to come back into the room. so to speak. It's taken time for me to accept this reality but I'm glad she's still with me at least. I just thought it might help my emotional welfare if I shared my thoughts online because I go though all the usual carer's negative emotions nearly every day. Any thoughts or advice are welcome.

joyanne said...

4 days

6 days

I too am struggling with the everyday resentment, anger, and depression about my husband 's diagnosis. I feel like there are times the man I married is long gone and am feeling lost in how to deal with his ever changing moods and obsessive, over compulsive actions. There are days even I lash out at him just because I feel like in some way he has let me and our children down. I know it's not his fault he didn't ask for this, no one asks for this. Any help of how to cite and get over these feelings would be greatly appreciated.

Lovey1103 said...

6 days

joyanne said...

4 days

Katfriend said...

11 days

I’m 39, my mom is 72 and has just been diagnosed with Parkinson’s. We have already shared a home since my dad’s suicide so in a sense I have been caregiving a while but this additional diagnosis is a real blow. I was hoping my sweet mom could live out her years peaceful after everything she has been through. Parkinson’s is a lot to take in. I know I will need a group of people that I can talk to about things I can’t talk to her about. It’s just me, my sister is estranged and won’t help and out and extended family won’t either. So I’m reaching out to those of you with experience. What advice do you have for us just learning the diagnosis??

LoriNannette said...

9 days

Elenta said...

8 days

Grazia said...

13 days

My husband has had Parkinsons for 30 years. He tries to stay active and positive. We can't get out much anymore. He has two grown daughters from a previous marriage who live nearby with their families. I am amazed they never offer to help or to visit him. Unless I ask them to on Fathers Day or his birthday. It would be nice if they could come over and relive me sometimes on weekends. Has anyone else faced the lack of caring on the part of family members.

talkey said...

about 18 hours

about 18 hours

LiKayH said...

14 days

My mom is 85 and has Parkinson's, Celiac Disease, Fibro Myalgia, bone on bone arthritis in both knees and Macular Degeneration. Add to this, I realized over the last Few years that she also probably has an undiagnosed personality/anxiety disorder. She has always been a very anxious, difficult to treat patient, and this is only getting worse as the cognitive aspects of PD progress, She is overly sensitive to perceived antagonism on the part of caregivers, and being that she is also very fussy and high maintenance she does tend to irritate them.

She has historically thrown the word "abuse" around, claiming that caregivers at various places are abusive. When I drill down to find out what she's talking about its always some minor thing like they got crabby with her or tried to physically help her move when she was confused by instructions like "turn to your left," (she has always had trouble with left v right, and sometimes it's necessary to physically show her before she goes the wrong way and falls).

I was present for an episode of "abuse" recently. Her physical therapist was trying to show her how to better transfer from wheelchair to regular chair, and her legs froze up. She was already upset because the therapist insists on using a balance belt--mom feels restrained by it. Anyway, when she froze, the therapist just encouraged her, saying things like, "take your time," and "Take a breath and try again.." Mom felt abused because she was felt pressured and somehow in her head she couldn't move because of the belt.

I've long since learned to take the "abuse" comments with a grain of salt. But this time she complained to the administrator at her assisted living, as well as claiming that the AL's staff had abused her and another resident, leaving bruises (There were no visible bruises on either of them, and the other resident denies that she has been abused). Anyway, unfortunately, the administrator was obligated to do an investigation and file a report with the state.

Fortunately, the state concluded this was non-reportable, but they now have a file on my Mom and the other resident. God forbid she ever actually BE abused, because it's going to be hard for anyone to believe her. I worry that this will make it harder for her to get into another facility if she has to move to nursing care, or if, as I kind of expect, this facility she is in decides they "can't meet her needs."

I'm my Mom's only child and other family members are either out of state or themselves dealing with health issues. I decided long ago that caring for her in my home was out of he question--the stress of dealing with her numerous health and psychiatric issues would be too much for me and damaging to our relationship, plus with her balance and gait issues, the open stairwell just outside her bedroom door would be a hazard.

Here's the thing: even with her in assisted living, my part in her caregiving is getting more and more stressful. She fell twice in May, both times ending up in the Er and then admitted to hospital with injuries. I had to move her out of her first rehab facility after she had a conflict with a male CNA and told wild stories about him making her run an obstacle course to get to the bathroom--she decided she was afraid of him and knowing that it would only escalate, I decided it was better for him as well as her for her for us to another facility. I had to move her out of one assisted living facility after a fall late last year (and another round of hospital and rehab stays), and then after a couple months when a smaller room became available I had to move her to that. Meanwhile I had major abdominal surgery in between moves.

She wants me with her all the time, and guilt trips me when I leave or take a day off, even when it can't be helped, such as when my car broke down and was in the shop.

Can anyone advise me what to do? Is there an ombudsman or someone who has more clout than I have, who could help me manage her care--I don't want them to take over, as that would definitely trigger her, but some advice and support would be great. I'm sure I'm not the only person dealing with these kinds of things and there may be a great way that I haven't thought of.

Your thoughts/advice would be appreciated,

soogate said...

14 days

LiKayH said...

13 days

Kay Marie said...

17 days

As I read over the many challenges that we as caregivers face, it occurs to me that maybe one of the meds my husband takes would be helpful to some of your loved ones who are anxious and/or becoming disagreeable. I had thought, and still do to some extent, that my husband had not become disagreeable because of his very low-key, generous personality. But then I remembered that he suffered from bouts of anxiety early on with PD and was prescribed citalopram. That has really helped the anxiety attacks and maybe made him more mellow! I know that one nurse, when asking what meds he was on, said, after hearing the med citalopram, "That's a great med! I think it should be put in the drinking water throughout the country! We could all do with being more mellow!" Just something to ponder.

Kay Marie said...

15 days

LiKayH said...

14 days

Kay Marie said...

17 days

As I read over the many challenges that we as caregivers face, it occurs to me that maybe one of the meds my husband takes would be helpful to some of your loved ones who are anxious and/or becoming disagreeable. I had thought, and still do to some extent, that my husband had not become disagreeable because of his very low-key, generous personality. But then I remembered that he suffered from bouts of anxiety early on with PD and was prescribed citalopram. That has really helped the anxiety attacks and maybe made him more mellow! I know that one nurse, when asking what meds he was on, said, after hearing the med citalopram, "That's a great med! I think it should be put in the drinking water throughout the country! We could all do with being more mellow!" Just something to ponder.

soogate said...

17 days

Lost in Florida said...

17 days

jlwleo said...

18 days

Well, here’s an update to my tale of woe. After a couple of weeks in assisted living, where they insisted he do PT and wouldn’t let him drink, my husband actually improved to the point he could walk fairly well without his walker and negotiate stairs if he held on to the railings on both sides. He continued to beg to come home. So I wrote out a contract between us, thinking having something in writing would help him remember it, and we both signed it. The agreement included things like having no more than two beers a day and not even attempting the steep basement stairs, which end at a concrete floor. I told him this was the only way I could keep living with him without losing my mind. He agreed to everything and promised not to let me down. The day after he came home he broke every rule. He’s back to drinking as much as he ever did, going downstairs whenever he wants, and is mad because I won’t give him the car keys. At the same time he can’t remember in the afternoon what he did in the morning. So I’m moving out. I got myself a nice little studio in a retirement community and I move there next week. His son will have to take over caring for his dad. It’s the only way to make both of them see he can’t live this way anymore. I love the guy but I’m through enabling him.

18 days

18 days

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