When I was first diagnosed I was much like you. Worried about what I’ll pass on to my kids. I then turned to what will my kids and husband have to take care of with me. I was worried about the burden I’ll be. I am slowly realizing that the real things I was afraid of was the same things I was worried about before the diagnosis, the unknown. Realty dictates that there’s no guarantee over our future no matter if there’s a diagnosis or not. I may be getting into the thought that being diagnosed may have been a bit of a blessing. I’m taking better care of myself. I’m planning a European trip next summer with my husband. I am also grateful to be diagnosed in the time I am in. Maybe a cure is on the horizon! Best of luck to all!! 💕
My greatest fear is being stuck in bed, with a dirty diaper and nobody there to help me. I also spend the day staring at the ceiling with nothing to do. I don't think I could take anymore.
Was diagnosed three years ago. Male, will be 72 in August. Have depression, anxiety, apathy, nausea, unsteadiness, severe fatigue, insomnia. I only go out to the doctors or to buy food. I workout every other day. My son and his girl moved in with me. They understand and help. Both of them recently lost their jobs. We are all struggling. My mortgage went up by 400.00. Bills late. Just doing the best I can. One therapist said I need to go out more. I am an introvert. I take no happiness in my hobbies anymore. Few out there understand.
I'm so sorry to hear of your troubles. I hope and pray you can find peace and support from someone or something like going online or joining a PD community or exercise group. But only you can make the change. I wish you well! Good luck to you.
I can relate the feelings of hopelessness I always said I would rather have cancer because they can either cure you or you’re going to die. Parkinson’s kills you a little at a time
But we can still combat it with exercise and meds to relieve some of the pain. I have a friend with ALS and that disease just breaks my heart. We can do this! Stay positive and just keep moving!
My wife asked me so many times why are you mad or why was I scowling before I was diagnosed. I have it pretty bad now and can see it in pictures. So bad now I try to stay out of all pictures. I have also lost about 35 pounds so my face has changed from that too.
Parkinson’s has taken my short-term memory, my libido and my autonomy. I’m dependent on my DH to go anywhere. I am terrified of not being able to swallow. There are so many weird symptoms with PD that the idea of losing even more of my brain and abilities is horrific. I used to be ballet dancer. Now, I can barely turn around without lurching one way or the other. I’ve fought depression all my life; I don’t need/want an illness that encourages it. If it weren’t for my loving family, I would check out tomorrow.
You are not alone. There is a friend in my PD class who used to be a ballerina and now she has freezing of gait. Another friend in class has been dealing with a lot of mental issues her whole life, adding on PD, she said was incredibly difficult. Glad you have a supportive family! If you haven't already, try finding a PD group too, to either exercise or just socialize with. That will help your mental state. (Obviously, I'm not a doctor, but just saying this from a patient perspective)
The pain is not a problem, the tremor is, not because it's hard to do stuff, but because it just shocks me, I can't believe it is happening to me. I am single and live alone and I am scared of what will happen when I can't look after myself I am 70. Self pity is crap.
Hello Jessica, would it be possible to do a video on dry mouth? I’m experiencing dry mouth bcb of my Parkinson meds. I m 59 years old and was diagnosed in 2019.
The best poker faces at table right Brian? Haha Our sense of humor and candor is very similar too. I won't put the whole quote here but.... It doesn't kill you It just....hahaha That was gold my friend! Laughter and the great friendships that we all build will keep us strong in our battles. There's many funny things I have done along the way, that's for sure. Just to share a few things related to the topic...A couple of my fears when newly diagnosed was the memory fading and/or developing either dementia/alzheimers, what others would think of me now, my job, how am I going to financially take care of things. The millions of thoughts racing through our heads...some silly some serious etc. Thank you both again as always for sharing. :)
Oh yes, Brian's sense of humor, one of the many reasons we all love him :) Finance is one we should have discussed too. That was a big concern of ours as well. Thanks for listening!
Thanks Jessica and Brian, you put out some great information without the medical overtones. My husband is in the older age group and doesn’t say much about what he feels, so your talks give me some insight. Keep up the good work.
I'm glad we can help. I've heard that a lot (that people with Parkinson's don't talk about how they feel) which is why we're really leaning into the fact that we are an open book. We wanted this podcast to give patients and caregivers insight. Glad it's doing that!
Thank goodness for Google ! Diagnosed last summer my biggest fear was that I didn't know anything about PD and I wanted to know everything what was happening to me. Followed the safe path of our famous neurologist Bas Bloem and found so much good and helpful information. Still in my closet in the chapter "Joylessness" but learning and being able to give a name to things happening and symptoms helps a lot. Slowly I notice the doors of the closet are opening and even there is some light on some moments. Grateful for what you are doing here ! Knowing I am not alone in this makes a big difference .... Much love from the Netherlands, Anja
Jessica I do not think you have to worry about a mask face for a long time. You have a beautiful smile that lights up your entire face. I really enjoy your podcasts each week.
That is so sweet - thank you! I'm not so worried anymore...even if it doesn't happen. It's one of those things I have just accepted. Thanks for your positive support and for listening!
When I was first diagnosed I was much like you. Worried about what I’ll pass on to my kids. I then turned to what will my kids and husband have to take care of with me. I was worried about the burden I’ll be. I am slowly realizing that the real things I was afraid of was the same things I was worried about before the diagnosis, the unknown. Realty dictates that there’s no guarantee over our future no matter if there’s a diagnosis or not. I may be getting into the thought that being diagnosed may have been a bit of a blessing. I’m taking better care of myself. I’m planning a European trip next summer with my husband. I am also grateful to be diagnosed in the time I am in. Maybe a cure is on the horizon! Best of luck to all!! 💕
My greatest fear is being stuck in bed, with a dirty diaper and nobody there to help me. I also spend the day staring at the ceiling with nothing to do. I don't think I could take anymore.
I totally understand
Was diagnosed three years ago. Male, will be 72 in August. Have depression, anxiety, apathy, nausea, unsteadiness, severe fatigue, insomnia. I only go out to the doctors or to buy food. I workout every other day. My son and his girl moved in with me. They understand and help. Both of them recently lost their jobs. We are all struggling. My mortgage went up by 400.00. Bills late. Just doing the best I can. One therapist said I need to go out more. I am an introvert. I take no happiness in my hobbies anymore. Few out there understand.
I'm so sorry to hear of your troubles. I hope and pray you can find peace and support from someone or something like going online or joining a PD community or exercise group. But only you can make the change. I wish you well! Good luck to you.
I can relate the feelings of hopelessness I always said I would rather have cancer because they can either cure you or you’re going to die. Parkinson’s kills you a little at a time
But we can still combat it with exercise and meds to relieve some of the pain. I have a friend with ALS and that disease just breaks my heart. We can do this! Stay positive and just keep moving!
you two have a good chemistry together keep up the good work.
My wife asked me so many times why are you mad or why was I scowling before I was diagnosed. I have it pretty bad now and can see it in pictures. So bad now I try to stay out of all pictures. I have also lost about 35 pounds so my face has changed from that too.
Parkinson’s has taken my short-term memory, my libido and my autonomy. I’m dependent on my DH to go anywhere. I am terrified of not being able to swallow. There are so many weird symptoms with PD that the idea of losing even more of my brain and abilities is horrific. I used to be ballet dancer. Now, I can barely turn around without lurching one way or the other. I’ve fought depression all my life; I don’t need/want an illness that encourages it. If it weren’t for my loving family, I would check out tomorrow.
You are not alone. There is a friend in my PD class who used to be a ballerina and now she has freezing of gait. Another friend in class has been dealing with a lot of mental issues her whole life, adding on PD, she said was incredibly difficult. Glad you have a supportive family! If you haven't already, try finding a PD group too, to either exercise or just socialize with. That will help your mental state. (Obviously, I'm not a doctor, but just saying this from a patient perspective)
@@thesecretlifeofparkinsons, Thank you. I do enjoy your videos.
The pain is not a problem, the tremor is, not because it's hard to do stuff, but because it just shocks me, I can't believe it is happening to me.
I am single and live alone and I am scared of what will happen when I can't look after myself I am 70. Self pity is crap.
Hello Jessica, would it be possible to do a video on dry mouth? I’m experiencing dry mouth bcb of my Parkinson meds. I m 59 years old and was diagnosed in 2019.
I had a friend share this website: parkinsonsdisease.net/answers/dry-mouth-pd-symptom
You can check it out and read it!
The best poker faces at table right Brian? Haha Our sense of humor and candor is very similar too. I won't put the whole quote here but.... It doesn't kill you It just....hahaha That was gold my friend! Laughter and the great friendships that we all build will keep us strong in our battles. There's many funny things I have done along the way, that's for sure. Just to share a few things related to the topic...A couple of my fears when newly diagnosed was the memory fading and/or developing either dementia/alzheimers, what others would think of me now, my job, how am I going to financially take care of things. The millions of thoughts racing through our heads...some silly some serious etc. Thank you both again as always for sharing. :)
Oh yes, Brian's sense of humor, one of the many reasons we all love him :)
Finance is one we should have discussed too. That was a big concern of ours as well. Thanks for listening!
Thanks Jessica and Brian, you put out some great information without the medical overtones. My husband is in the older age group and doesn’t say much about what he feels, so your talks give me some insight. Keep up the good work.
I'm glad we can help. I've heard that a lot (that people with Parkinson's don't talk about how they feel) which is why we're really leaning into the fact that we are an open book. We wanted this podcast to give patients and caregivers insight. Glad it's doing that!
Thank goodness for Google ! Diagnosed last summer my biggest fear was that I didn't know anything about PD and I wanted to know everything what was happening to me. Followed the safe path of our famous neurologist Bas Bloem and found so much good and helpful information. Still in my closet in the chapter "Joylessness" but learning and being able to give a name to things happening and symptoms helps a lot. Slowly I notice the doors of the closet are opening and even there is some light on some moments. Grateful for what you are doing here ! Knowing I am not alone in this makes a big difference .... Much love from the Netherlands, Anja
Hello Netherlands! It is also good when you finally feel like you aren't alone. I hope you are able to learn from and enjoy the podcasts!
Jessica I do not think you have to worry about a mask face for a long time. You have a beautiful smile that lights up your entire face. I really enjoy your podcasts each week.
That is so sweet - thank you! I'm not so worried anymore...even if it doesn't happen. It's one of those things I have just accepted. Thanks for your positive support and for listening!
In my 40's I would always get
"Why are you mad"? "You look sad"? Now I don't know what they think lol nobody says anything
I hear ya, I still wonder what they think but I usually forget if I even might look sad or mad!
@@thesecretlifeofparkinsons 😉😃😃 yep!!