[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

[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.

[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

[Diana]

This is a very long thread, so sorry if someone already mentioned this! I first heard about this phenomenon when Alan Alda described in an interview how he determined that he had Parkinson’s. He had read about this in an article in the NY Times and experienced it. I believe he thought he was throwing a bag of potatoes at someone trying to hurt him, but was really throwing a pillow at his wife! He went to his neurologist, but because he had no other symptoms of PD, they wanted to dismiss it. However, he insisted on a DaTscan and after that was diagnosed with PD. It was the dreams that started him down the path of realizing what he might have.

[Diana]

Hi Gwendoline,

Thank you so much for your insight. My husband is a functional medicine doctor and based on information he read, he started taking mannitol a few weeks ago. He said that he feels that his arm is less stiff and he will most certainly continue taking it. I’m very pleased that he is going to Rock Steady Boxing classes three times per week and he is very engaged in that. He definitely doesn’t have apathy at this point, which I can imagine is quite frustrating to deal with as a caretaker.

My challenge is to live every day and not to dwell on future possibilities of how this will play out. Of course, PD is a very individual disease and nobody knows how it will progress for any particular person. I am hoping that my husband’s progresses very slowly and we can do some of the traveling we were hoping to do. We have only been married for six years and with COVID have not had a chance to “see the world” together as we were hoping to do in later years.

I hear many stories of anger and outbursts in PD patients, but it is not something I have found much information about online. This is my greatest concern, since as the caretaker we must be the ones to remain calm and to understand that the disease is talking, not the person, but from what I have experienced so far, that is easier said than done.

I am very appreciate of this forum and the insight of others.

Thank you.

Diana

[Diana]

Hi Kathy,

Thank you for this honest post. My husband was diagnosed about a year and a half ago. He is now 64. I have already noticed many physical changes. He used to be full of energy and now he must rest a lot. He also shuffles and almost loses his balance quite a bit, but the thing I worry about the most right now is when he starts to choke. I have also noticed personality changes. I understand that he must be angry and frustrated, but he sometimes takes it out on me, saying I don’t understand and won’t be able to “deal” with him as he worsens.

I will do whatever I must for him, however I am honestly quite scared. As a nurse, you already have the temperament, experience and skills to deal with such a condition. I do not. I wonder how he will become and what life will be like. I hope that he will stay as he is, but I know that is unlikely.

I am afraid, and I often feel guilty for feeling afraid.

Thank you again for sharing honestly what it is like for a caregiver.

G-D bless you.

Diana

[Diana]

Thank you, Phil. I totally agree that my hubby and I are a team. I also go with him to all of his appointments, etc. I just feel that his frustration with everything sometimes gets aimed at me, and it is hard not to take it personally.

[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

[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

[Diana]

Hi Bill. I have sent you a friend request.

[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 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

[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

[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

 

[Diana]

I just sent you a friend request, Marjorie 🙂

[Diana]

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

[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

[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 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

[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 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

[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.

[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]

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