Lot of wisdom in this video. I will be seeing my neurologist next week and talking with him about ON and OFF and nighttime dystonia. The good news is that I was diagnosed in June 2023 and am still on basic 100mg doses of Levodopa. So increasing the meds may help. Another possibly positive factor is that I will celebrate my 80th birthday in August. The really good news is that my wife, partner, and BFF, to whom I have been married for more than fifty years still puts up with me.
John, 50 + years together, that is so wonderful, congratulations. Glad you found the video helpful and useful. It is good that you only need basic meds at this point. Hopefully it lasts. 😊😁😀
The profoundness of marriage, or deep union, or the essential strength of a friend cannot be overstated. I feel the "distant idea" of being terrified of what lies before us (my husband and I) on this Parkinson's road... Yet, this narrative has had other landmines added to the journey as well! What we "fear" may never happen. Things we did not see coming, do. Strength comes in the living moments we pass through, as we - at times - come to the end of ourselves, only to lean into a Strength that pulls us through, into the next moment that holds revelations of it's own. Dave, this posting is a precious gift to us. Thank you for it. And, another ((❤HUG❤)) to Haley. ❤😊❤
I also find that changing your mood and attitude has a big effect on your own and off time. If you're having a bad day or fighting with somebody or arguing, you're gonna have more off time. It's just one of those things. Everything affects. You're on enough time that surprised me.
Hi Darlene, yes stress and mood play with on time as well. Stress can shut me down, but thankfully a lot of that has been eliminated from our life for the time being.
Thanks for being so honest David. Sometimes I feel like you describing my life and my symptoms. It helps to hear someone else discuss it because I don't feel so isolated. I'm just one of many! Love your channel
Hey David 👋😀👋 Wow, 7 yrs already where has the time gone!! I've been walking along with you and for sure it's a slow steady disease Thank you and Hayley for documenting your journey together it's been very helpful 😊
Hey! Sorry to hear about the strict diet. Glad that you’re overall doing well despite the pain in the butt PD can be. Your YT page sure has come a long way!
Hi Michele, not missing the sugar or junk food all that much because of what it does to me. Would rather feel good and have body function than being tied to the bed. Thanks for being a part of this journey from the early days.😊😁😀
One of the comments said thank you for being so honest! That's the whole point really, we have to be honest with ourselves and others because we help others with 11:01 PD. I too was diagnosed 7 years ago and everything you said and more, I can absolutely relate to. We can and do help each other.
My parkinson's disease is the worst symptoms only the tremor and the others are quite manageable but the side effects of Levodopa carbedopa are the biggest problem for me. I was diagnosed with Parkinson's disease in 2016. My hobbies are exercise and jogging everyday
Hi William. Good to hear that you get lots of exercise. I don't get tremors that often, so I can only imagine how debilitating that is. Thanks for sharing. 😊😁😀
My wife died in 2022 after 23 years with Parkinson's diease whch is even listed as the cause of death on death certificate ,she was a hands on patient and I was a hands on caregiver I believe she had 19 years of a fairly good life with PD because she was determinded to use every means to stay alive despite PD and we also in NYC have so many resources for help here. exercise, hydration ,support groups were very helpful and a great LCSW in the movement disorders hospital she attended ,where Michael J. Fox is treated ,lucky us in New York with PD or any large city that offers so much support. Sadly when PD related dementia took off it hastened the end of her life.
Hi David, Thank you for sharing this valuable insight. After watching one of your videos and doing further research, I bought a red light device for a family member suffering from Parkinsons :) They haven't yet tried it yet, but hoping for better symptom management and increased on time after they do.
Hi David, my husband had horrific constipation with his Parkinson's. I recently added a probiotic to his supplement regimen and it has helped alot beside the magnesium in the evening for him. Just an FYI.
@@LH23511 I forgot to add my husband also has one tablespoon of flax every morning as well. But, eradication of constipation took full effect when extra strength probiotics were added to the magnesium and flax.
Some of the medicine that neurologists use in Parkinson's cause very hard stools , I tried so many suggestions even colace and more liquid intake for my wife plus ,figs and prunes but in my instances ,nothing really worked Youghurt helped a little . PD is different for each patient so ones advice may or t not apply to your husband.
@@Lalaland-q2z Ummm my husband also takes 2 Magnesium tablets, no need to correct my statement, I was addressing David, Also as an RN I have other remedies both natural and pharmaceutical in my arsenal as well, and just an FYI my husband's constipation was quite distressing. Please stop feeling sorry for yourself, many are dealing with the ravages of Parkinson's, not just yourself and your wife
thanks for sharing....They want to start me on physical therapy may 31st and something that deals with sleep assessment sept 19th I am still waiting for my primary to refer me to the neurologist....My primary is an advanced Nurse practitioner....
Hi Brandon, I really hope you can get a referral to a neurologist, even better a movement disorder specialist. It is so difficult to diagnose PD as you probably already know. Is there another primary you can talk to?😊😁😀
Happy Birthdays, stop the sugars and keep up all the supplements. Bless you and happy days. Vegetables and a bit of meat is what i eat and dont forget lots of healthy fats.
I bought a waterpik (a Costco disc item right now!😅) for my hunbun because he was fretting about his ability to floss his teeth before bed when he's "off". I have a fuzzy-panic when it occurs to me that I may need to brush and floss his teeth for him. My service-oriented side thinks that making cookies or borscht should be sufficient. Soooo, the stupid-priced waterpik became a hope "go to" for me. Best thing EVER! He is weak during his bedtime routine, but that lil' spouse-saver really delivers caregiver-angst support!😇🥰
I have a question David for you or anyone who reads this. Has anyone ever had a sudden feeling of your throat being glued down at the bottom base of It's the only way I can describe it. I've had it a few times now and I know it's my Parkinson's progressing because 7 yrs ago my throat suddenly closed and I could only sip water for several days. That was a contraction painful type feeling then. This time it's not painful thankfully
I’ve had esophageal spasms a few times. Prior to my PD diagnosis, I went to the hospital when I had a long painful spasm I thought I was having a heart attack.
@@adawehi55 thanks for your help in answering that was my first episode to my throat Scared the Dickens out of me. It was during the Christmas holiday so I never got any help at the time. Is there anything you do for yours?
Sorry. No one told me what to do about the spasms. I know being calm is important. If in doubt, get help. I had a swallowing test about a year ago. Even though I passed, pills still get stuck in my throat. I go through all sorts of crazy moves to get pills down. That’s a whole other story. I’d like to see a video on eating and taking pills.
@@LifewithParkinsons It's ok David it's not something everyone goes through who has Parkinson's. It is esophageal spasms and it can be very painful it's a strong cramp like feeling. The throat is a muscle so it's susceptible to spasm like any other muscle I guess. Just not pleasant lol 😋
Hi Anthony, I get lots of exercise, check out this video. ua-cam.com/video/mgYYCLsKing/v-deo.html When I was diagnosed I was told I have the bad kind (direct quote) of Parkinson's, so it will progress. 😊😀😁
@@LifewithParkinsons hey David, just wondering when did you notice the difference in “on” “off” period? I’ve had PD for two years and it hasn’t been bad besides freezing. I know it’s just a matter of time.
Hello, mahirap sagutin ang tanong na iyan. Hindi ko alam kung bakit may Parkinson's Disease ka, at hindi ko alam kung bakit meron ako nito. Pinipilit ko lang na gawin ang lahat ng makakaya ko. Ingat ka, at salamat sa panonood.
Lot of wisdom in this video. I will be seeing my neurologist next week and talking with him about ON and OFF and nighttime dystonia. The good news is that I was diagnosed in June 2023 and am still on basic 100mg doses of Levodopa. So increasing the meds may help. Another possibly positive factor is that I will celebrate my 80th birthday in August. The really good news is that my wife, partner, and BFF, to whom I have been married for more than fifty years still puts up with me.
John, 50 + years together, that is so wonderful, congratulations. Glad you found the video helpful and useful. It is good that you only need basic meds at this point. Hopefully it lasts. 😊😁😀
The profoundness of marriage, or deep union, or the essential strength of a friend cannot be overstated. I feel the "distant idea" of being terrified of what lies before us (my husband and I) on this Parkinson's road... Yet, this narrative has had other landmines added to the journey as well!
What we "fear" may never happen. Things we did not see coming, do.
Strength comes in the living moments we pass through, as we - at times - come to the end of ourselves, only to lean into a Strength that pulls us through, into the next moment that holds revelations of it's own.
Dave, this posting is a precious gift to us. Thank you for it. And, another ((❤HUG❤)) to Haley.
❤😊❤
Hi Rose, I had to read your comment to Hayley. Thank you so much for your kind and encouraging words. Hugs right back to you.😊😁😀💓
Happy Birthday!!! God bless you and keep you!
You as well Soy Min!😊😁😀
I also find that changing your mood and attitude has a big effect on your own and off time. If you're having a bad day or fighting with somebody or arguing, you're gonna have more off time. It's just one of those things. Everything affects. You're on enough time that surprised me.
Hi Darlene, yes stress and mood play with on time as well. Stress can shut me down, but thankfully a lot of that has been eliminated from our life for the time being.
Thanks for being so honest David. Sometimes I feel like you describing my life and my symptoms. It helps to hear someone else discuss it because I don't feel so isolated. I'm just one of many! Love your channel
Hi Johnnie. You are most welcome, you are definitely not alone. Thank you for your kind words and encouragement😊😁😀
Hey David 👋😀👋
Wow, 7 yrs already where has the time gone!! I've been walking along with you and for sure it's a slow steady disease
Thank you and Hayley for documenting your journey together it's been very helpful 😊
Hi Tory, yes it has been 7 years. So difficult to believe. Thanks for being a part of this journey from the early days.😊😁😀
Hey! Sorry to hear about the strict diet. Glad that you’re overall doing well despite the pain in the butt PD can be. Your YT page sure has come a long way!
Hi Michele, not missing the sugar or junk food all that much because of what it does to me. Would rather feel good and have body function than being tied to the bed. Thanks for being a part of this journey from the early days.😊😁😀
One of the comments said thank you for being so honest! That's the whole point really, we have to be honest with ourselves and others because we help others with 11:01 PD. I too was diagnosed 7 years ago and everything you said and more, I can absolutely relate to. We can and do help each other.
Hi Carol. Thank you for your kind and encouraging words. I like it that we can support each other even though we are far away.😊😁😀
My parkinson's disease is the worst symptoms only the tremor and the others are quite manageable but the side effects of Levodopa carbedopa are the biggest problem for me. I was diagnosed with Parkinson's disease in 2016. My hobbies are exercise and jogging everyday
Hi William. Good to hear that you get lots of exercise. I don't get tremors that often, so I can only imagine how debilitating that is. Thanks for sharing. 😊😁😀
Thank you for sharing, David! Happy Parkiversary. 💕🌷
No problem Charlotte 😃😊😀
My wife died in 2022 after 23 years with Parkinson's diease whch is even listed as the cause of death on death certificate ,she was a hands on patient and I was a hands on caregiver
I believe she had 19 years of a fairly good life with PD because she was determinded to use every means to stay alive despite PD and we also in NYC have so many resources for help here. exercise, hydration ,support groups were very helpful and a great LCSW in the movement disorders hospital she attended ,where Michael J. Fox is treated ,lucky us in New York
with PD or any large city that offers so much support. Sadly when PD related dementia took off it hastened the end of her life.
Hi Michael, thank you for sharing something so close to your heart. 😊😁😀💗
Hi David,
Thank you for sharing this valuable insight. After watching one of your videos and doing further research, I bought a red light device for a family member suffering from Parkinsons :)
They haven't yet tried it yet, but hoping for better symptom management and increased on time after they do.
Thank you for being so honest about your experience, and great point about caregiving in marriage through sickness and health
Hi Erin, you are most welcome. Hope you are doing well. 😊😁😀
Another informative video. That was a very sweet idea about having water and your meds so handy!
Thank you Sharon, Hayley is full of good ideas😊😁😀
Happy birthday😊😊 wish you live so healthy
Thank you Asma!😊😁😀
Happy Birthday❤🎉
Thank you 😃😊😀
Have you looked into using a vibration plate?
Can you please explain what you mean? Thank you Tony😊😁😀
Sir 4yrs in oarkinson im fr phillipmes
Hi Mama, hello from Canada. Thank you for watching😊😁😀
Hi David, my husband had horrific constipation with his Parkinson's. I recently added a probiotic to his supplement regimen and it has helped alot beside the magnesium in the evening for him. Just an FYI.
Hi Dana, thanks for the tip and suggestion😊😁😀
@@LH23511 I forgot to add my husband also has one tablespoon of flax every morning as well. But, eradication of constipation took full effect when extra strength probiotics were added to the magnesium and flax.
@@LH23511 I'm not sure about the oil, it might have been cod liver oil?
Some of the medicine that neurologists use in Parkinson's cause very hard stools , I tried so many suggestions even colace and more liquid intake for my wife plus ,figs and prunes but in my instances ,nothing really worked Youghurt helped a little . PD is different for each patient so ones advice may or t not apply to your husband.
@@Lalaland-q2z Ummm my husband also takes 2 Magnesium tablets, no need to correct my statement, I was addressing David, Also as an RN I have other remedies both natural and pharmaceutical in my arsenal as well, and just an FYI my husband's constipation was quite distressing. Please stop feeling sorry for yourself, many are dealing with the ravages of Parkinson's, not just yourself and your wife
thanks for sharing....They want to start me on physical therapy may 31st and something that deals with sleep assessment sept 19th I am still waiting for my primary to refer me to the neurologist....My primary is an advanced Nurse practitioner....
Hi Brandon, I really hope you can get a referral to a neurologist, even better a movement disorder specialist. It is so difficult to diagnose PD as you probably already know. Is there another primary you can talk to?😊😁😀
@@LifewithParkinsons I will certainly look into it....
Happy Birthdays, stop the sugars and keep up all the supplements. Bless you and happy days. Vegetables and a bit of meat is what i eat and dont forget lots of healthy fats.
Thank you, sounds like we have a very similar approach.😀😁😊
I bought a waterpik (a Costco disc item right now!😅) for my hunbun because he was fretting about his ability to floss his teeth before bed when he's "off". I have a fuzzy-panic when it occurs to me that I may need to brush and floss his teeth for him. My service-oriented side thinks that making cookies or borscht should be sufficient. Soooo, the stupid-priced waterpik became a hope "go to" for me.
Best thing EVER! He is weak during his bedtime routine, but that lil' spouse-saver really delivers caregiver-angst support!😇🥰
Hi Rose, I hope he loves his waterpik, I know a lot of people use them.😊😁😀
Thank you
You are most welcome😊😁😀
Thanks for bringing up diet. It’s a juggling act for me.
No problem, Karen. If there is something you would like covered feel free to email info@lifewithparkinsons.ca
I have a question David for you or anyone who reads this. Has anyone ever had a sudden feeling of your throat being glued down at the bottom base of
It's the only way I can describe it. I've had it a few times now and I know it's my Parkinson's progressing because 7 yrs ago my throat suddenly closed and I could only sip water for several days. That was a contraction painful type feeling then. This time it's not painful thankfully
I’ve had esophageal spasms a few times. Prior to my PD diagnosis, I went to the hospital when I had a long painful spasm
I thought I was having a heart attack.
@@adawehi55 thanks for your help in answering that was my first episode to my throat
Scared the Dickens out of me. It was during the Christmas holiday so I never got any help at the time. Is there anything you do for yours?
Sorry. No one told me what to do about the spasms. I know being calm is important. If in doubt, get help.
I had a swallowing test about a year ago. Even though I passed, pills still get stuck in my throat. I go through all sorts of crazy moves to get pills down. That’s a whole other story.
I’d like to see a video on eating and taking pills.
I have never heard of that Tory.
@@LifewithParkinsons It's ok David it's not something everyone goes through who has Parkinson's. It is esophageal spasms and it can be very painful it's a strong cramp like feeling. The throat is a muscle so it's susceptible to spasm like any other muscle I guess. Just not pleasant lol 😋
Hi David, did you workout much during these 7 years? If not, do you think your progression would have been slower?
Hi Anthony, I get lots of exercise, check out this video.
ua-cam.com/video/mgYYCLsKing/v-deo.html
When I was diagnosed I was told I have the bad kind (direct quote) of Parkinson's, so it will progress. 😊😀😁
@@LifewithParkinsonswell looks like you’re doing great now. Keep up the great work! Always great information on your page.
@@Anthony99355 thank you
@@LifewithParkinsons hey David, just wondering when did you notice the difference in “on” “off” period? I’ve had PD for two years and it hasn’t been bad besides freezing. I know it’s just a matter of time.
Hi Anthony, here is the first video that I really talk about OFF times.
ua-cam.com/video/wwWOeWaApho/v-deo.htmlsi=TO-ZUbnR4Stp9J5X
70yrold a woman who realy ask my self a bbig Y me
Hello, mahirap sagutin ang tanong na iyan. Hindi ko alam kung bakit may Parkinson's Disease ka, at hindi ko alam kung bakit meron ako nito. Pinipilit ko lang na gawin ang lahat ng makakaya ko. Ingat ka, at salamat sa panonood.