Care Partners/Givers Interested in Support Group

[Jack Waller]

My husband was diagnosed 13 years ago with P. H is an anomaly. His philosophy is, I have my good days and my bad days, and the bad days take care of themself

[Diana]

That’s such a great attitude. My husband is similar. He says that “Every day is a good day and every day is a bad day. It just depends on what part of the day you focus on.”

[Suzanne Lang]

Hi Diana,

I would be interested in being part of a PD caregivers group. I hope I am not too,late in responding. I am just figuring out how to negotiate the Parkinson’s New forums.

My husband was diagnosed in 2019; but like many others’ experiences, we know he has had it for a longer time. He lost his sense of smell about 20 years earlier and nobody ever picked up on that…of course it would not have changed anything and maybe we were better off not knowing.

We are trying our best to keep a little ahead of the Parkinson’s but each day it gets a little harder to do. I am an RN and am his sole caregiver.

I would love to be part of an online support group as it is a lonely road. Our social life is primarily made up of going from one doctor appointment to another along with PT. On the rare occasion that we have some place to go, Mr, Parkinson steps in and he is not able to go.

I will try to message my email info to you and look forward to hearing from you and participating in this much needed group.

Suzanne

[Diana]

Hi Suzanne,

Thank you very much for messaging me your email address. I have added you to the group’s email list, so you will now receive all correspondence, including the link to our May meeting.

I am sure you will find the group valuable, as it is made up of many warm, caring and supportive people.

I look forward to meeting you soon!

Diana

[Rosie]

I am interested in joining the group. I thought I replied to Diana with my email but I didn’t receive invite to last weeks meeting.

Thanks,

Rosie Astrofsky

[Diana]

Hi Rosie,

I just received your email and have added you to the group correspondence list, so you will now receive all future correspondence.

I look forward to meeting you in May!

Regards,

Diana

[Lea]

Hi Diana, I’m a bit “late to the party” but it looks like you have a great bunch of caring caregivers who are supporting each other. I’d love to join you next month (looks like I’ve just missed this months zoom) I’ve sent you a private msg.

 

my story is that my 64 year old husband of 40 years was diagnosed with PD two years ago and while things aren’t too bad at the moment I know a support group like this can only assist in the future.

like many here, I recognised many symptoms years ago (REM sleep disorder, lack of arm swinging as he walked, loss of sense of smell, sudden “ageing”) but doctors were very slow to diagnose. My dad had PD and initially I dropped my bundle a bit, remembering his final few years. But I realise now that everyone’s journey is very different. He still plays golf and tennis and has found an amazing PD exercise class (PD Warrior… not sure if this is a global thing or based in Australia?) where he has also met several men at a similar stage in PD journey. They encourage each other in class and meet up socially too.
I’ve  just realised  tho, that I’m starting to struggle with the changes to our lives and the future we thought we had (a kind of grief I guess) I have made an appt with a therapist and now hopefully will be able to join you all in May…. Might be the middle of the night here but I’ll be awake and ready to Zoom

looking forward to meeting some of you in May, I already feel a bit lighter knowing you are all supporting each other on this journey

kind regards Lea

[Diana]

Hi Lean,

I apologize as I missed your lovely email until just now. Thank you so much for your note. I hope you can join us even though I know the time is not very convenient for you! We have a really amazing, caring group of people and they are an immense source of support.

In May we will have guest Daphne Bryan who has PD and is an expert in high-dose B1 therapy, which has been a hot topic and something that’s really helped my own husband.

Looking forward to “meeting” you!

Best,

Diana

[Barbara Combs]

Hi Diane, I’d like to join the caregiver support group.
Thank you!

[Diana]

Hi Barbara,

Please direct message me your email address and I will add you to our group email list.

Our next meeting is Sunday, May 21.

Thank you!

Diana

[Jeanine]

I would love to join this support group. I am 77, husband 71 was diagnosed 17 years ago and fel a need o converse with people who understand.

[Diana]

Hi Jeanine,

I apologize that I didn’t see your message sooner, but you haven’t missed anything this month as our next meeting will be on Sunday, May 21.

Please direct message me your email address and I will add you to our group list.

Thank you!

Diana

[Jeanine]

Thank you for adding me.

[Lea]

Hello Diana, just checking when the next zoom meeting will be and checking that you send invites to those on the list?

Many thanks

Lea

[Diana]

Hi Lea. Thanks for checking in! Due to Mother’s Day falling on May 14 (which would have been our normal meeting day), this month the meeting will be held on Sunday, May 21. I’ll send out a reminder to people this week that we’ve moved the date and then another one on Friday, May 19 with the link. I look forward to seeing you there!

[Lea]

Thanks Diana, can you please remind me of time….I’m away that weekend (yoga retreat so I should be very zen when we meet:) ) And want to make sure that i can set up my zoom call while I’m away…. I think it’s during your daytime which will be early monday morning for me which could work perfectly (I’ll be home by then)

Cheers, Lea

 

[Diana]

Hi Lea,

The meetings are at 2 pm EDT. Due to Mother’s Day on the 14th, the next meeting will be Sunday, May 21 at 2 pm EDT.

I’ll be sending out an email about it today or tomorrow.

Thanks!

Diana

[Marcia Kerensky]

Hi Diana,

I am interested in the caregiver’s support group.

[Diana]

That’s great, Marcia! We would love to have you join the group. Please direct message me your email address and I will add you to our group list. Thank you! – Diana

[Laurie]

Yes! I am TOTALLY interested- please let me know when and where- I’ll be there

[Diana]

Hi Laurie,

We’d love to have you in our group! Please direct message me your email address so that I can add you to our correspondence list.

All the best,

Diana

[Sophia]

Hello! Diana and Everyone,

I’m a Retired Physician, and for a year now, my dearest Husband and I have been the full-time Caregivers to my younger sister, who was diagnosed a year ago with Parkinson’s Disease…or possibly Parkinsonism…and she and I have just spent the last 24/7 of the past 10 days…together at the Hospital whilst she was recuperating after Colon Cancer Surgery…and an eventful several days whilst there…dealing with Cardiac Arrest/Tachycardia and Atrial Fibrillation. But we made it through all that…together…and now having just heard about your amazing Caregivers Support Group…I’d love to gather with all of You..to support one another…to Love on One Another as we “dance” TOGETHER…through it all.

 

[Diana]

Hello Sophia,

Thank you so much for your lovely note. You and your husband certainly are strong, wonderful people. I am glad that your sister has you to care for her. I also hope and pray that she will make a full and speedy recovery from her surgery.

Could you please direct message me your email address? I can then add you to our group email list. We have a meeting coming up this Sunday at 2 pm Easter Time, so I wouldn’t want you to miss it!

All the best,

Diana

[Beth Ann Chambers]

I am interested in a support group via Zoom for sure!

Beth Ann Chambers

[Diana]

Hi Beth Ann,

We’d love to have you join our group! Please direct message me your email address and I’ll add you to our email list. We have a meeting coming up this Sunday at 2 pm Eastern Time!

All the best,

Diana

[Janet]

Yes Diana, I am interested. The only problem would be getting him out of the room so I can talk freely. Ever since his diagnosis last September, it seems that I am tied to him 24/7. The neurologist says that it is early stage but he is already driving me crazy. Simple things he could do for himself not long ago, he now asks for help – and when I do leave him on his own, he does dumb things like allowing an unknown person access to his computer. I married a brilliant engineer 52 years ago and I miss him. He is now 75 so we are fortunate in late onset but as longevity runs in both our families, we could have 25 years or more to cope with this.

[Diana]

Hi Janet,

Thank you for reaching out. I am so sorry to hear of your situation. I think that you will find a lot of camaraderie and support about this dilemma in the group. I know of some people who join us from their car to get some privacy. It can definitely be challenging.

Please direct message me your email address so that I can add you to our group correspondence list. Then you will receive all future notices and meeting information.

Kind regards,

Diana

[BOB22]

Hi Diana,
I was diagnosed with PD back in Dec 2019. My main symptoms are my voice is not strong and I have trouble with my balance. I know I’m driving my wife crazy and that she could use a suppport group to voice her frustrations. Could you please send us the info regarding the support group meetings .

Thanks,
Robert

[Arlene]

I would like to be added to the caregivers support group My hwp and dementia. The nights are really hard would like to bounce off ideas with people who are in the same situation.

 

Thank you in advance