Jessica, you are such a strong woman with a pleasant nature. I am 2 years into my diagnosis and your podcast is the most helpful and encouraging to me. Keep shining and give yourself lots of grace. God does!😊😊
You must relax Jessica. take it day by day may be hour by hour! DBS is wonderfull!1 I have it five years ago and I was diagnosed 18 years ago. I am now 67 and still go on Well a little bit slower but who cares. Stay as sweet as you are and don't worry!! be positive as you are. Thanks for your humbleness and honesty. We love you!!
Jess, thanks for your honesty. This disease is like Whack-A-Mole… it’s always changing. Here are a few things I’ve learned: I’m 2.5 years past diagnosis, 53, and now on full time disability from a professional job. I’m doing life with Christ, not life with Parkinson’s. I’ve cut back to bare minimum Levocarb because I got addicted to it… intense anxiety when I hit OFF times, especially when working. Trauma from the tremor was difficult, but I was counselled to deal with it head on. Minimal Levocarb means more tremor and bradykinesia, but less dramatic ON/OFF phenomena. I made an intentional choice to get off the hamster wheel. My big issue is now cognitive changes. It’s okay to take time for yourself to figure out what is right for you. Having a demanding day CAN greatly affect your next day, causing the big fluctuations. I’ve learned to build in rest days especially after pushing myself. Social times need a buffer after too. Take a “stimulus break” after a meeting, for example, where you go to a quiet, darkened space. You don’t need to know all the answers, just the One who IS the answer. Praying for you 🙏❤️
Jessica, Thank you for your courage in facing Parkinson's and searching for what works for you. You inspire me to do the same. In that, my life is improved.
I highly recommend any qualified person to have a DBS for a more controlled life style. My wife had her implant in 2019 at OSU Wexner Medical Center. Last week, Dr. Patel tweaked the DBS for her right leg to move and step out stronger. Amazing results!
I have no problem with diskinesia -- probably because I've stayed away from the dopamine agonists but the dystonia can be a real problem, especially in my hands. Bradykinesia is also a problem in the mornings but I have management strategies that are working well enough that I'm still largely medication-free right now and my quality of life is realitively unaffected. Now coming on five years since diagnosis and I've spent a huge amount of time experimenting with mitigation strategies with good success.
@@gwynne127 A lot of exercise (walking and resistance training) because the endorphins released go on to stimulate dopamine production. I'm also taking creatine monohydrate as a supplement because there are some studies that indicate positive effects on Parkinson's. I'm also now trying beta alanine as a supplement because there are indications that it has a synergistic effect with the creatine and can act as a dopamine modulator. Another greatly overlooked substance is coffee. The phenols in coffee are health-promoting and caffeine itself has a useful effect in stimulating and controlling dopamine production. I bought an espresso machine and have 2-3 cups a day at strategic times. My diet is now heavily based on protein and healthy fats with very little in the way of carbohydrates and zero refined sugars. That seems to give me much more consistent energy levels throughout the day and helps with mood also. I've worked hard on developing other coping strategies for the anxiety, sleep distruptions and other symptoms associated with Parkinson's -- I'll probably write a blog on what I'm doing and how I worked out the best way to manage those issues. These things work for me but they may not work for every one because, as we know, everyone's Parkinson's journey is slightly different.
The Dystonia is really painful, i had toes dystonia for a couple years, and stayed 30 mins or more until the medication kick in, thats the time it stop , and dyskinesia is just your body move around, specially when you talk, sometimes make you dizzy, so I decided to installed dbs, just recently, 4 weeks ago, so far the dbs work, as of now i don't have dystonia, dyskinesia and tremor, I have relief, don't know for how long.
I have been where you are 10 years ago. Rytary is way more steady. I look back on video of me compared to now, I wish Rytary was around back then. I had so much more dyskenisia.
Can’t speak for God, but this 80 year old man diagnosed with PD in June 2023 agrees with everything else in the previous comment. Jessica, you are an inspiration to OFPD (Old Fogies with PD) as well as YOPD.
thank you for being honest, you provide help for people going through the same things keep up the good videos, how many years has it been for brian since his dbs? can dbs help advanced parkinson like delusions and halluciations in the later stages?
Thank you for sharing this message. How long after commencing Sinemet does Dyskinesia occur? I am still considering taking the meds. A little apprehensive to be honest. I enjoy your input. Kind regards John
Jessica, you are such a strong woman with a pleasant nature. I am 2 years into my diagnosis and your podcast is the most helpful and encouraging to me. Keep shining and give yourself lots of grace. God does!😊😊
You must relax Jessica.
take it day by day may be hour by hour! DBS is wonderfull!1 I have it five years ago and I was diagnosed 18 years ago. I am now 67 and still go on Well a little bit slower but who cares. Stay as sweet as you are and don't worry!! be positive as you are. Thanks for your humbleness and honesty. We love you!!
Hi Jessica. Thank you so much for being transparent and being such an encouragement to us. You are awesome!
Jess, thanks for your honesty. This disease is like Whack-A-Mole… it’s always changing. Here are a few things I’ve learned:
I’m 2.5 years past diagnosis, 53, and now on full time disability from a professional job.
I’m doing life with Christ, not life with Parkinson’s. I’ve cut back to bare minimum Levocarb because I got addicted to it… intense anxiety when I hit OFF times, especially when working.
Trauma from the tremor was difficult, but I was counselled to deal with it head on.
Minimal Levocarb means more tremor and bradykinesia, but less dramatic ON/OFF phenomena. I made an intentional choice to get off the hamster wheel.
My big issue is now cognitive changes.
It’s okay to take time for yourself to figure out what is right for you. Having a demanding day CAN greatly affect your next day, causing the big fluctuations. I’ve learned to build in rest days especially after pushing myself. Social times need a buffer after too. Take a “stimulus break” after a meeting, for example, where you go to a quiet, darkened space. You don’t need to know all the answers, just the One who IS the answer.
Praying for you 🙏❤️
Jessica, Thank you for your courage in facing Parkinson's and searching for what works for you. You inspire me to do the same. In that, my life is improved.
Thanks for sharing. Reminds me i need to keep a journal.
Thank you Jessica for sharing about this 🎉😊
I highly recommend any qualified person to have a DBS for a more controlled life style. My wife had her implant in 2019 at OSU Wexner Medical Center. Last week, Dr. Patel tweaked the DBS for her right leg to move and step out stronger. Amazing results!
I have no problem with diskinesia -- probably because I've stayed away from the dopamine agonists but the dystonia can be a real problem, especially in my hands. Bradykinesia is also a problem in the mornings but I have management strategies that are working well enough that I'm still largely medication-free right now and my quality of life is realitively unaffected. Now coming on five years since diagnosis and I've spent a huge amount of time experimenting with mitigation strategies with good success.
what have you done?
@@gwynne127 A lot of exercise (walking and resistance training) because the endorphins released go on to stimulate dopamine production. I'm also taking creatine monohydrate as a supplement because there are some studies that indicate positive effects on Parkinson's. I'm also now trying beta alanine as a supplement because there are indications that it has a synergistic effect with the creatine and can act as a dopamine modulator.
Another greatly overlooked substance is coffee. The phenols in coffee are health-promoting and caffeine itself has a useful effect in stimulating and controlling dopamine production. I bought an espresso machine and have 2-3 cups a day at strategic times.
My diet is now heavily based on protein and healthy fats with very little in the way of carbohydrates and zero refined sugars. That seems to give me much more consistent energy levels throughout the day and helps with mood also.
I've worked hard on developing other coping strategies for the anxiety, sleep distruptions and other symptoms associated with Parkinson's -- I'll probably write a blog on what I'm doing and how I worked out the best way to manage those issues.
These things work for me but they may not work for every one because, as we know, everyone's Parkinson's journey is slightly different.
i am 5 years in tremor dominate and going through somewhat similar confusing symptoms and meds
Thanks for sharing..
The Dystonia is really painful, i had toes dystonia for a couple years, and stayed 30 mins or more until the medication kick in, thats the time it stop , and dyskinesia is just your body move around, specially when you talk, sometimes make you dizzy, so I decided to installed dbs, just recently, 4 weeks ago, so far the dbs work, as of now i don't have dystonia, dyskinesia and tremor, I have relief, don't know for how long.
I have been where you are 10 years ago. Rytary is way more steady. I look back on video of me compared to now, I wish Rytary was around back then. I had so much more dyskenisia.
Can’t speak for God, but this 80 year old man diagnosed with PD in June 2023 agrees with everything else in the previous comment. Jessica, you are an inspiration to OFPD (Old Fogies with PD) as well as YOPD.
thank you for being honest, you provide help for people going through the same things keep up the good videos, how many years has it been for brian since his dbs? can dbs help advanced parkinson like delusions and halluciations in the later stages?
❤
Thx for the video! I would love to chat sometime!
Thank you for sharing this message. How long after commencing Sinemet does Dyskinesia occur? I am still considering taking the meds. A little apprehensive to be honest. I enjoy your input. Kind regards John
Has anyone tried the new med called Crexont? It’s supposed to be like Rytary with both IR and CR levodopa in one.
Can not afford it
I sent a message to you. I hope you received it. Can you check your junk mail for the last two weeks? Sent with best wishes, I hope I'm not a bother!