Ep. 123 Parkinson’s: Things We Hide From The World

[@SDWP]

Great talking points. I don't even let myself think about the future. I've had people ask me what my plan is and I tell them that I'll figure it out as it comes...I'm just taking a day at a time. I know I would like to move out of my state and be near mountains/water, but who knows if that will ever happen. I just find it easier to not even think about it. Keep your head up and stay active.

[@rogerokelley]

@SWDP I made a plan slowly and one day at a time. Make life enjoyable with no stress 😊

[@JeremyMcdonald]

I would love to live by the mountains! Thx, Michele!

[@AnnOlive-bl1pm]

Thank you for sharing your true feelings. I have a lot of the same feelings and fears that I hide. It helps to know others feel the same way.

[@JeremyMcdonald]

Always, Ann!

[@tomrio9914]

The fear of being found out. My mother at ninety three is dealing with big challenges. The fact that from the age of nine she witnessed her mother’s PD journey all before any meds were available. I try really hard to not be seen by her at my worst. I bet that was a hard one for you to film. Thanks for listening my friend.

[@JeremyMcdonald]

As always, right back at you, brother!

[@doriscorr334]

Dear Jeremy, that's what I like about you. You are so authentic and not afraid to show your feelings. I was very close to cry. I give you a big hug. I think we all have this fear about your future. Sei nicht traurig. Ich denke auch mehrmals am Tag was ist das für eine Scheiße. You are a great person. It's good that we have you for our community. Grüße aus Deutschland Doris

[@JeremyMcdonald]

Danke! Our lives are full of much Scheiße. But there are still many things that are gut! Ich liebe meine deutschen Freunde🥰

[@unitedlutheranchurch-racine]

2 year anniversary of my PD diagnosis this week. I’m 52 and used to be able to work on projects till midnight or 1am and now I have to be in bed by 9, usually earlier and waking up 3-4 times each night. My wife, God bless her, has had to walk me up the stairs to get to bed so I dont come tumbling down. My son had to help me off the ground after sitting and petting my dog. Sometime just getting a Phillips screwdriver to align with a screw is a huge challenge. And then there is the fatigue which seems to be constant. So many things that people don’t know about my PD. And then when I hear people say you look really good today because the meds are working JUST on my tremors, but they don’t see all the hidden effects. Thanks for the video. Peace!!!

[@JeremyMcdonald]

You are strong and I am glad that you are staying active! Only someone else with PD could possibly understand what we struggle with on an hourly basis. Thanks for staying in touch. What is your name?

[@johnp.2614]

Great video, Jeremy! Really gets one thinking. I was diagnosed a little over 5 years ago. I consider myself fairly lucky, as I can still do mostly everything without help just slower and less graceful. I think about the future too - the good and the bad. Maybe I will get severely worse, or maybe the future will hold better treatments or even a cure. One never knows what the future has in store for us. The first winter after I was diagnosed a friend of mine was shoveling snow, and he had a massive heart attack and died in his driveway. This guy was a body builder, 51 years old, clean diet, no drugs and very little alcohol use. This guy probably thought he was going to live to be 100. This past Father’s Day weekend, another friend and former co-worker, didn’t feel well. After his kids visited and left, he decided to go to the hospital. When he arrived, he went into cardiac arrest. They brought him back. On Monday he got heart surgery and on Tuesday he died in the ICU. This guy also would have been considered healthy. I spent over 30 years in a career that saw a lot of untimely deaths - from accidents to plane crashes to acts of violence. The thing that most of these people had in common was they didn’t see “it” coming, they were “blindsided,” just like that day I went to the doctor in June of 2019 thinking I had Lyme Disease, and I heard those words, “I think you have Parkinson’s.” It is a horrible disease, but I tell everyone that I am going to do as much as I could. When I think of the future I try to think of better treatments and maybe even a cure. Good luck and stay as healthy as you can!

[@JeremyMcdonald]

Thx, John! You’re right that life is so random. I did everything right physically with no family history of PD, and I still got it. Life is chaos and we just have to accept that we have no control over things most of the time.

[@bettybarrett323]

Thank you for this Jeremy. My husband was diagnosed 3 1/2 yrs ago, he is 75. I shared this video with him. We are in this together, but there is so much we don't know yet, so much we need to do to prepare for later ef r, when things will get harder for him.

[@JeremyMcdonald]

Sounds like you are an amazing wife! Keep it up!

[@jackmcloraine5354]

Another heartfelt video that positively pulls at the heartstrings. Thanks for sharing, Jeremy.

[@JeremyMcdonald]

I like to think that I’m saying what a lot of us are thinking.😎

[@LoraBorder]

You are right. We deal with a lot that nobody seems to accept or understand. I’m 58 and can hardly walk. I have incontinence, stiffness. I haven’t taken the right medicine. They don’t help enough. Either slow moving like I can hardly move or they are too strong and I’m unsteady falling a lot. It’s very hard, depressing to live with each day. Thank you very much for your videos.

[@JeremyMcdonald]

Life is a grind. Even more so when you have a chronic illness. Thx for watching!✌️

[@LifewithParkinsons]

Hi Jeremy very good list of things we hide from the world. The fear of the future is the biggest one for me❤

[@JeremyMcdonald]

Thx, Diamond Dave!

[@annesaunders3580]

Appreciate you being straight up about this and sharing your feelings with the rest of us. ♥ My husband had his off days for sure and tried to keep it to himself, but regardless he just kept motoring along with his life and this was a source of wonder to a lot of people. He was one of the strongest people I've ever met in my life and was a deeply spiritual person as well listening to the writings I'd read to him. ♥ You hang in there, Jeremy, you do good deeds by posting about your life with Parkinson's. Hugs to you. ♥

[@JeremyMcdonald]

I am honored that you would share your husband’s warrior spirit with me! I will indeed hang in there, Anne.❤️

[@GoProGoalieUzi]

Brother all true to the POINT. I do need help from my wife to pull up or pull down the undies at times. Especially as of late. I am so stiff, that I cannot move. No other way than to ask for help. Keep rockin it!

[@JeremyMcdonald]

💯! Rocknroll!

[@isabt4]

Wow! You are beautiful! Sorry if that sounds weird in a comment, it’s the feeling I had listening to you. Thank you for this video! I am here to try to understand more, so I can be a support for my dearest friend/sister, who has been recently diagnosed. The strength you show is amazing, and on top of that, you’re helping others with your videos. Thank you and all my best wishes, from Spain ❤

[@JeremyMcdonald]

Muchas gracias! I will never turn down a compliment! Yo soy muy guapo? Es verdad!😂😂😂

[@rogerokelley]

You are right brother. All of it you said is so true. What hit me the hardest is when my 34 yr old son said Dad!! You look fine to me. He still hasn’t accepted it and he’s no help to me. Heart breaking for me after I’ve devoted my life to him 😓😓😓

[@JeremyMcdonald]

That’s sad about your son. And when people say “you look great!”, it can be difficult to tell if they even mean it. Thx, Roger!

[@Wesbob89]

There is no way to end a podcast of a life threatening desires! Just Mac I think it’s amazing that you address these problems head on with super personal videos that can be viewed by the public. This is so sick and keep doing it brother! I don’t have it but it’s so crazy it could happen to anyone. I love that you keep putting the awareness out there on every upload is awesome for that community. 1 Love.

[@JeremyMcdonald]

We’ve known each other for a long time, Wes! It’s really cool that you get what I’m trying to do. Peace!

[@andrewalthuis3666]

Agree with everything that you said Jeremy.

[@JeremyMcdonald]

Thanks for saying that, Andrew.

[@jo-anneknott4113]

Hang in there, Jeremy.We woke up this morning .

[@JeremyMcdonald]

Barely!😂😂😂

[@jo-anneknott4113]

@@JeremyMcdonald 😂

[@terrieladow6423]

I know the feeling I'm that way. Thanks

[@JeremyMcdonald]

Thank you, Terrie!

[@terrieladow6423]

@@JeremyMcdonald no, thank you. I shared it with friends and family. Well done!

[@MrTimFarnham]

All I can say Jeremy is that I totally agree. We just have to remember that we are not alone. A million of us out there with PD.

[@JeremyMcdonald]

Well said, Tim!

[@Mullins-sc6zr]

Yep. You should show your deck at least once every episode.

[@JeremyMcdonald]

Whenever possible, I record out there. Unfortunately, the weather has been swampy in the STL. Hotter than satan’s butthole!😈😂

[@dakotamouse]

The future. I'm with you there. The worry about how my end will come.... I'm not as far into this journey as you are. Most people wouldn't know I have PD. I hide my hand and cross my ankles. My close relatives know but I don't talk about it. I have a sister-in-law that's a nurse. She means well but I hate it when she asks how I'm doing. I don't want to dwell on it or talk about it. I'm not hiding it. I have no problem telling people I have it but I don't want that to be the center of my existence. I don't want to explain the constant anxiety, the bowel and bladder problems. How sometimes my throat forgets how to swallow. How the things I loved to do are becoming impossible. It all just plain sucks.

[@JeremyMcdonald]

I just keep reminding myself that people really don’t understand how difficult this disease can be. Otherwise, I might take things personal. Thx Dakota Mouse!

[@mikefalch8304]

I just watched red thong-OMG! It’s OK to share the fear because we all have it. Keep on trucking Jeremy - you are the man!

[@JeremyMcdonald]

The red thong story is one of my favorites!😂

[@julesj5853]

Hey Jeremy, Ive reached out to you a couple times talking about my grandpa with PD and a year ago I was telling you that he was still really independent and now he had been in memory care because he developed dementia with his PD that happened 6 months ago and now on Wednesday he contracted covid and I don't think he is going to make it, the inflammation from covid has his PD taking over completely. He refusing his meds food and water. I hate this probably more than he hates having PD, I just wanted my grandpa to die doing the things he loved to do, but PD took all that away, I am trying to stay positive for him but I also know he is tired of PD.

[@JeremyMcdonald]

I totally remember you! It breaks my heart to hear about your grandpa. He is exhausted from fighting this terrible illness and what it is doing to him. My thoughts are with you, friend.☹️

[@terrieladow6423]

Ive sent this to 5 people

[@JeremyMcdonald]

😍

[@brendadeveau8852]

❤️❤️🥰🥰🫶🏻🫶🏻

[@JeremyMcdonald]

Thank you, Brenda!