Care Partners/Givers Interested in Support Group

[Blanche Glazier]

Hi Diana,

I would definitely be interested in support group, however, it is hard for me to participate due to the amount of medical appointments we have, but I would like to try.  We moved from our home of 36 years in California to Tennessee 2 years ago, and have not been able to make new friends due to COVID, so I really do feel isolated.

My husband was diagnosed about 4 years ago, but in hindsight, all the things I complained to the doctor about for 20 years were a gradual decline due to Parkinson’s.  He has diabetes, COPD, history of Valley Fever, an aortic valve replacement, hippocampus functioning at 8% (probably Alzheimers, but definite dementia of some kind), and opiod dependency, as well as Parkinson’s.  I lose my patience a lot, and pray constantly for it, as well as understanding, love and kindness. All of which are very difficult because we lost our sex life, and his ability to show love because of the hippocampus functioning at least 20 years ago, or more.  I will only get thru this by the Grace of God, and if I can get it, the help of others in the same situation.  I am a Nurse Practitioner, and that has helped a lot.

[Vivian]

Hello Diana,

I think this is a great idea. I live in England, but know so many caregivers are so alone in dealing with a loved one with Parkinson’s.

At the moment will don’t even have enough nurses to support Parkinson patients, let alone caregivers. We have one Neurologist to 2,000 patients and 2 nurses, we are now down to one looking after all the sufferers.

My husband was diagnosed 2 years ago, but I noticed symptoms in here more than 12 years ago. I cannot blame doctors because my husband never went to talk to a Dr about his symptoms (loss of smell, slightly hand tremor, thrashing in bed at night and slow walking). Of course angry about this because he only went to the Dr after a friend to my daughter said, sorry to see that your father has Parkinson’s. My daughter told me this and I said, I have mentioned this to your father a lot and he just ignores it. Eventually he went to the doctor and when he mentioned it she said oh yes looking at you I would definitely say you have Parkinson’s. Since diagnosis he has declined considerably, bearing in mind he is only 51, diagnosed at 49, but I believe he has had Parkinson’s for about 15 years, undiagnosed.

I feel very alone! Talking to others would be wonderful!

My very best wishes to you all

Vivian

[Diana]

Hi Vivian. Thank you so much for your note. I know how alone it can feel. It really isn’t something that friends can understand and I don’t feel over-sharing with them is helpful or appropriate, which for me can lead to a bit of feeling isolated. I just sent you a friend request. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Christine de los Reyes]

Hi Diana,

I am interested in your idea of a caregivers support group.  My husband was diagnosed a little over 4 years ago, but like most of the experiences I hear about, he had symptoms a few years before.  He is a Neurosurgeon who retired in part because of the disease.  It is tough to see him so changed but I continue to tell myself to “enjoy every minute of every day” with him.

Christina

 

[Diana]

Hi Christine. Thank you for your response. I messaged you privately to please send me your email address. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Suzenna]

Count me in.  My husband was diagnosed in 2012, but looking back, he had symptoms-that I misread and took personally-at least 20 years prior.

To be able to speak with others who are going through the same struggles would be a wonderful release of feelings that are bottled up inside and share the things that work for us.

Right now, I’m battling the insurance company while my husband is in the hospital with a broken ankle.  The doctors want to send him to an acute physical therapy facility, while the one person who does the authorization, who has never met him or spoke to him, thinks she knows better than the doctors, and wants to put him in a nursing home.

Suzenna

[Diana]

Hi Suzenna. I’m so sorry to hear you’re going through this insurance hassle right now. I also hope that sharing emotional support and information with others who truly understand will help to ease the stress associated with this situation, to whatever level that is possible.

I just sent you a friend request. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week.

Thank you! Diana

[Suzenna]

How do I privately message you?

[Diana]

If you just click on my name in blue under my photo, it should give you the option to message me. Let me know if you have a problem, or if you prefer, just give me your email address publicly.

[Marjorie Weiss]

I am interested. How can you securely get our info as I would not like to post my email on this thread?

[Mary Beth Skylis]

Hi Marjorie,

Thank you for your message. It’s best to directly message whoever you’re trying to share your information with. In this case, I’d recommend clicking on Diana’s name and sending her a private message.

Please let me know if you have any additional questions.

[Diana]

Hi Blanche. I have sent you a friend request. Please privately message me with your email information so I can add you to our group list. Thank you! Diana

[Diana]

Hi Blanche. I just sent you a friend request. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Vic]

I am very interested!

 

[Vic]

I am very interested!

[Vic]

I am very interested in the zoom meetings!  My husband has PSP which is basically pd on steroids. We got the diagnosis in 2021 and I am struggling! We live in Va Beach. Please add me to your list

vicki

[Diana]

Hi Vicki,

Are you Vic Zim? If so, you are on the list and should be getting the emails each month. If not, please private message me with your email address and I will add you to the group email list.

Thanks!

Diana

[Ann Kozak]

Hi Diana,
I’ve been a caregiver/partner to my partner since 2010 when he was diagnosed with PD. I participate in a monthly caregiver ZOOM call, but we’ve been on hold for a few months. I would love to join you and any others on a carepartners call. We live in upstate New York. What info do you need from me? Thanks!

Ann

[Elaina]

Hello, Diana. I would be interested in participating in a caregiver’s support group. Let me know when it could begin. My husband has had Parkinson’s for about 20 years. Talking with others and how they cope, would be helpful.
Thanks,
Elaina

[Diana]

Hi Blanche,

Oh, you are certainly dealing with so much. My husband was diagnosed in 2019, but like you, I now know that many of the symptoms I have noticed for many years were likely signs of PD. We have only been together for 10 years, so I can’t say what he was like any farther back then that.

I think it would be great to “get together” virtually. I think that if there are any silver linings to all of this, then one of them would be the ability to forge new friendships with some incredible people.

Perhaps we could do the get-togethers in the evening during a time that is a bit more quiet for you (if that exists).

I’d love it if anyone interested can direct message me so that I can have their direct contact information as we move forward with our support group.

Sending good vibes,

– Diana

[Theresa Hupp]

Hello,

I would also be interested in a virtual caregivers support group. I’ve been trying to find a group in Kansas City, so far without success, though a local hospital has talked about starting one. It’s possible I’ll start a group through my church, if the hospital group doesn’t work out. But nevertheless, I’d like to participate in this online group.

My husband was diagnosed in 2014. The first few years were easy, but it’s getting harder. He has “off” periods most days, and sometimes these turn into panic attacks. He also has some other medical issues causing pain, and we haven’t been away from home (except to visit his 94-year-old mother who now has dementia–another story) since before the pandemic. And his executive functioning is suffering. He was a lawyer but now is so slow at getting any paperwork done. I do all the financial and tax work–for our personal accounts, for his business account, and now for my mother-in-law.

I’m in the Central time zone, and I’m available most evenings, though I have monthly commitments some nights. I’ll see if I can direct message you, Diana.

MTH

[Diana]

Thanks for reaching out, Theresa! My goal is to find a monthly time that is as convenient as possible for everyone so that we can make this work. I see you messaged me, so I will respond to that now.

I hope that others who are interested will also DM me.

[Bill Frohberg]

Count me in.  My wife was diagnosed with PD in 2012.  Not what she needed – adding more misery to the Crohn’s disease she has had for 30 years.  We have a local PD support group, but received a harsh response speaking to the person running it.  Cindy has tried almost every med and all kinds of homeopathic products to help her.  When I mentioned the “M” word (marijuana) this guy blew a gasket, and said it’s illegal in our state and we don’t condone the use of that.  I replied, if you’re against a substance (even though illegal) that would help alleviate the pain and make her feel more comfortable – your group is not what we are looking for.

Please keep me posted when you start up.  Sounds like there could be some good insight. Especially for a cargiver.

[Diana]

Hi Bill. Thanks so much for your response. I’m sorry to hear that you went through that. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Diana]

Hi Bill. I have sent you a friend request.

[Lori]

I’d love to if the timing works.  I care for my mom who has PD and  early dementia that seems to be progressing rather rapidly since she moved in with my husband and I about 7 months or so ago.  I think compared to the stories I’m reading here, it hasn’t been that bad for me (or for mom) but I often second guess myself.  Lately, she has had moments of paranoia that have been disturbing and sometimes I wonder if I am being too overprotective in not allowing her to do certain tasks.  It’d be wonderful to share experiences and ideas on coping.

We live in Canada, our time zone is Eastern Standard.

 

[Diana]

Hi Lori. Thank you so much for your response. I just sent you a friend request. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Corrie Trattner]

Hello Everyone,

My heart goes out to all of you.  My husband passed away from PD a year ago but he also had Bipolar Disease, vascular wounds, Lewy Body dementia, diabetes and other complications.  He was officially diagnosed in 2016 but from the reading that I had done and comparing the declining symptoms he had for many years, I’m quite sure that he had PD long before it was diagnosed.  He entered his first assisted living in 2015, had annual bouts of decline which landed him in the hospital and then rehab for gradually increasing lengths of time and only once was able to get back to his previous baseline.  After 3 and 1/2 years in one assisted living, he had to be transferred to a different one that was the only one in our area that had a limited medical license, so it was a step down from a nursing home.  They also had a dementia unit which he had to be transferred to a year later and then he passed away on March 6, 2021.

It was a very difficult, long, sad, and heart wrenching journey.  Although everyone’s path is different, I do have a good idea of what you all are going through, and again, my heart goes out to all of you.

Now that I am on the other side of the journey, I’d like to be able to help caregivers meet their emotional needs, as I found that to be sorely lacking throught the process, which got worse as my husband’s condition continued to decline.  Please let me know if I can be of any help to you all.

Blessings for strength, patience, courage, and resilience,

 

 

[Diana]

Hi Corrie,

I am so sorry to hear about your loss and everything that you and your husband endured. It would be an honor to have you participate in this group, and no doubt you can be of great emotional and educational help.

Thank you for including your email. I have added you to the group list and plan to reach out next week to everyone who has given me their contact information.

Blessings,

Diana

[Corrie Trattner]

Hi Diana,

Thanks so much.  I look forward to hearing from you.  Somehow, I may have accidentally blocked notices from Parkinson’s News and am trying to figure out how to unblock it.  I know that you said that you will be reaching out to everyone next week, but just in case, feel free to message me.

Thanks so much again,

Corrie

[Marie]

Yes, count me in!!! Late afternoons, evenings eastern United States time is good for me!!! Great idea!!!!

[Diana]

Thanks for your response, Marie! I just sent you a friend request. Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Roy]

Hi, I am Cheryl and my hubby, Roy was diagnosed in 2016. However, he, too, had many non-motor symptoms that were ignored for many years. We have been together close to 20 years and I believe he was suffering from early PD when I met him.
We just discovered that we have a local group that meets monthly and hope to get involved in that in April. I would very much appreciate being included in this group too. I need something to help me as we progress through this journey.

thank you!

[Diana]

Thank you, Cheryl! Please privately message me with your email information so I can add you to our group list. I’m currently organizing all of our names and contact information so that I can reach out via email next week. Thank you! Diana

[Celeste]

Hello—Thank you for the inquiry about whether anyone might be interested in an online support group, and, to each of you who have expressed interest. I, too, would like to meet some good people who are walking this path. I have some flexibility around times to meet.

My husband was diagnosed with PD about a year ago, although almost five years ago I started noticing sleep disturbances, along with some memory and balance issues. While we have been together for eight years, we’ve been married for just two — so the news of his illness has hit us both hard. He is 75 , I am 59, and we’d hoped to be able to do many of the things in our lives that we’d deferred for a variety of reasons. Perhaps we still can, and, I’m enough of a realist to want to both live in the moment and at the same time prepare myself for what may come. His symptoms are not largely life altering right now (frequent sleep issues and pretty well controlled tremors) — and, while I’m grateful that the symptoms are not yet worse, I’m grieving the reality I/we am/are adjusting to.
I’d welcome the opportunity to meet some allies and develop supportive relationships with people who understand what all this is like; what it means.
thank you for being open to connecting — and thank you for being out there with a willingness to listen and offer thoughtful kindness. Celeste

[Marjorie Weiss]

Look into melatonin for the sleep/dream issues. It has helped my husband stop having night terrors.

[Diana]

Thank you so much, Celeste. I have sent you a private message regarding your email address. Looking forward to having you in the group. – Diana

[Angela]

Hello,

My husband was told that he had 5 years before he would lose all function. He is just 60. I am trying to find ways to support him. I am seeing a lot of his ADL’s slipping. I am worried about him driving and handling power tools. He is quite depressed and I find him sobbing quite a bit. I am 65, working at a emotionally stressful job with the homeless, have grandchildren and my own mental health problems. I find I am doing more and more of the household chores and it’s draining. When he doesn’t understand things on the computer or something he has read he panics and I have to drop everything to solve his problem.
He refuses to use any mobility aids like a walker and I am afraid he will have a fall. He can’t handle anything that is not routine such as a birthday party or visiting his daughter who is in addiction. I think we could pool our resources via zoom. I am home by 630 pm usually BC time. Thanks

[Marjorie Weiss]

I am interested.

[Diana]

Great, Marjorie! Please privately message me with your email.

[Diana]

I just sent you a friend request, Marjorie 🙂

[Marjorie Weiss]

Oh, Angela. I hope you will get a second opinion on that five-year window. My husband has had PD for over twenty years and Deep BRina stimulation surgery has been his salvation. He also participates in Rock STeady Boxing classes, and had been trained in LSVT Loud therapy for his voice and LSVT Big for his movements. There is help out there.

[Diana]

Hi Angela. I am so sorry to hear about everything you are going through. I agree with Marjorie that there is hope out there. I get angry when doctors play G-D. They are not, and they do not know your husband’s timeline. As Marjorie said, there is help out there.

I have sent you a private message. Please send me your email address so that I can add you to our group email list.

Thank you.

Diana

 

[Linda Johnson]

I am grateful to Diana for suggesting this.  My husband has been declining for years, and I am at the point where I can no longer be a solitary caregiver.  I would love to communicate with other PD caregivers.  In fact, I am wondering if a dedicated message line might be even better than a monthly meeting, considering the broad range of time zones involved.  My family (10 adult children) has a real-time message line.  We post comments and concerns and other participants monitor the thread and offer support, suggestions, congratulations, and sympathy. Sometimes I don’t log on for a week, but I can follow the thread back and catch up.  If we received a notification when someone posts, we could log on and participate at our own convenience.

[Diana]

Hi Linda,

Thank you for your response. I think that a dedicated message line would also be great!

My purpose with a Zoom get-together is to provide the personal face-to-face contact that I feel is lacking with a forum or message line. I look forward to not only sharing support and information, but hopefully seeing some smiles and even sharing tears if necessary. I think we’ve all be so extra isolated due to COVID that this type of personal support is even more important right now.

If you are interested, please privately message me with your email address.

Thank you!

Diana

[ECaregiver]

Hi Diana,

I am interested in joining the Caregiver/Partner Support Group.  Thank you.

Elena

[Diana]

Great, Elena! Please message me privately with your email address so I can add you to our group.

[Vic]

I am very interested in your group and will participate! My significant other was diagnosed last summer and it seems like I am trapped and can’t breathe at times. Thanks for this

Feel free to message me.

 

[Diana]

My pleasure, Vic. Please message me with your email address and I’ll add you to our group list. I’ll be starting to reach out via email to everyone interested soon.

[Chris Clore]

I am interested in this also, assuming the timing works.  Hard to find the perfect time and day!

[Diana]

Hi Chris! Please message me privately with your email address. Trying to find a monthly time that works for everyone will be the next step!

[Diana]

THANK YOU to everyone who has expressed interest in our support group!

Please message privately via this forum to give me your email address. The next step will be reaching out via that method to attempt to find a time to bring everyone together via Zoom.

I feel so blessed that so many people are interested and I look forward to sharing support, ideas and information that can help all of us, no matter where we are on this journey.

Blessings to all.

Diana

[Theresa Feliu]

Hi Diana,

I would be interested in participating. My husband was misdiagnosed with PSP in 2016. We discovered about 6 months later that it was regular Parkinson’s. Needless to say, we celebrated! He has probably had it for about 10 years. There are no support groups around us, so I would love this experience.

Theresa

[Diana]

Hi Theresa. Yes, that is cause for celebration! Thank you for sending me your email address. I have added you to our group list and will reach out via email soon! – Diana

[Diana]

Hi Everyone!

I am overwhelmed with gratitude toward everyone who is interested in joining our new Zoom support group. I have tried to respond to everywhere individually, but I don’t want to miss anyone.

If you are interested, please privately message me with your email address.

I plan to send an email out next week to everyone who has given me their address so that we can take the next steps.

Thank you!

Diana

[Tara Miller]

Greetings all-

I am interested in joining this group. My husband was diagnosed 8 years ago at the age of 39. I am so glad to see this!

Thanks much-

Tara

[Corrie Trattner]

HI Everyone,

I really want to be part of this forum and caregiver’s group.  But I’d prefer if it was on this forum and not through my emails.

Thanks,

Corrie

[Diana]

Hi Corrie.

This group is going to be a monthly Zoom group so that we can all have real-time, face-to-face contact, which is something that many of us sorely lack. The use of email is solely for group administration purposes. It is not feasible, or practical, for me to organize a group by filtering forum responses. Please let me know if you change your mind, as I’m sure we could all benefit from your presence.

Best regards,

Diana

[Diana]

Hi Everyone,

I would like to provide an update on our Parkinson’s Care Partner Support Group.

I am thrilled to announce that it will take place on the second Sunday of every month at 11 am PT / 2 pm ET. It will occur via Zoom video and last for one hour.

Thus far, we have 16 participants.

It is never too late to join this group!

If you are interested in joining, please message me privately with your email address at any time, and I will send you the information to access the meetings.

You can direct message me by clicking on my name under my photo.

Please note that I can only add you to the group if you direct message me with your email address.

Thank you and I look forward to seeing you in the group!

Best regards,

Diana

[Mary Beth Skylis]

Diana,

Thank you for taking the initiative to organize such a powerful group. How has it been going so far?

[Diana]

Hi Mary Beth!

We had a wonderful first meeting in April. Eight of us attended and it ended up going for an hour and a half!

Our second meeting will be this coming Sunday, May 15. We moved it from May 8 due to Mother’s Day.

We shared so much support and valuable information just in the first meeting, and I look forward to it continuing!

All the best,

Diana

[Angela]

Hi a once a month zoom meeting sounds reasonable . I am in the pacific zone ( Vancouver/ Seattle) and works days. What time were you thinking would work?

[Diana]

Hi Angela,

We have actually begun our meetings, with the first one in April. The next one is coming up this Sunday, May 15. They are held the second Sunday of the month (although we moved it this month due to Mother’s Day) at 11 am PT / 2 pm ET.

If you are interested, please private message me with your email address and I will add you to our list to send the Zoom invitation.

All the best,

Diana

[Angela]

Can you please send me the zoom link.

[Diana]

Hi Angela,

Please direct message me with your email and I will add you to our meeting list.

Thanks!

Diana

[Charlie]

Diana: Yes I would be interestd in an actual support group. We did have a local group that shut down over Covid. Currently, I care for my wife with PDD and I myself also was diagnosed with PD two years ago….Charlie

[Judy Cimala]

My husband was diagnosed with PD last October. He had symptoms about six months before, but we didn’t pursue it. He has the REM Sleep behavior disorder for years which we knew thatPD was probably in his future. He is doing quite well on his medication now and is still working. As with PD we don’t know what the future holds. By the way, for those who have trouble with the REM sleep behavior. My husband has taken Klonopin. He sleeps well and doesn’t act out his dreams.

[Diana]

Thank you, Judy.

 

Would you like to join our Care Partner support group, which meets once per month on the second Sunday of the month at 2 pm ET / 11 am PT? Due to Mother’s Day, this months meeting is this Sunday, the 15th. If you’d like to join, please privately message me with your email address and I will add you to the list.

Best, Diana

[Judy Cimala]

Yes. Feel free to direct message me.

[Diana]

I private messaged you. 🙂