Excellent video. My wife has had PD now 12 yrs. Yes it has progressed. Diskinesia, falling, fatigue, anxiety….. So my goal is to take whatever symptom it is that’s impacting her the most and try to lessen it and find a longer term solution. For instance for constipation we got the Symbyx PDcare laser in combination with laxatives and more fiber. For fatigue we have focused on improving sleep. We have changed mattresses and pillows. Right now she is using a HOMBYS Wedge Pillow. It has definitely helped. Without question the most beneficial thing for her is exercise. Right now she is in a 12 week 2X/wk PT program at a local hospital. They have focused on what’s challenging her the most like slouching after sitting for a while and getting in and out of bed. She has improved both. We are also big fans of the PD exercise channel Power for Parkinson’s. Yes the drugs can only do so much so I think you have to maximize what you can do to improve rest exercise, and diet. My mantra to her is celebrate what you can do and keep fighting.
Thank you for your comment, a beautiful portrayal of caring for each other no matter what! Very loving. I'm so glad you are able to help your wife reduce symptoms through partial remedies, I find it helps me a lot. Yes, exercise for is the #1 intervention. Would be lost without it.😊😁😀
Oh David, that's an appalling thing for your consultant to have said. If they can't think of anything at all to benefit a patient, maybe they need to reflect on their own career choices/ongoing professional development? Kudos to you for dealing with a blow like that with such positivity and grace of spirit and turning it into excellent things to advise, motivate and support the Parkinson's community. Thank you so much.
Hi Lorna. Thank you, it did take a bit of time to get over the shock and unbelief, but now it has turned into motivation to learn as much about PD as possible. There are actually lots of ways we can help ourselves. I will pack it into the playlist this video is in.😊😁😃
I've been at accepting the misery of PD for 6 years (I was diagnosed in 2019). I have given up hope for a cure or breakthrough, from the beginning. One can do more in life if you are not distracted by a constant absorption in false expectations, which always lead to disappointment and pain. Give up hope and face reality - with open arms. You will discover a release that is peace. Sure, welcome the efforts of medical scientists to bring an end to this scourge.. no need to be negative. Give up hope AND fear. My neurologist, who is a specialist in movement disorders, disowned me when I refused to continue be a "trial" of chemicals, aka medications, to which I had very strong reactions, "side effects" (oh! give me a break!! - side? - more like the main course!!) . Love your wiggles, David. Stronger when you are worked up over something. Mine too.
Hi Alec, good to hear from you. Yes, this one got me worked up a little more than usual. It's tough to go to support group and hear someone else tell the same story(don't come back their MDS said). Where is the BC medical system headed? 😊😀😁
Oh man that is not good my friend. The doctor really said that!! Shocking to say the least. You are doing great and your knowledge is top notch. I hope you can find another mds, perhaps at ubc.
Thanks GoPro, I will leave no stone unturned in the search! Not too worried about an MDS at this moment, I just have to communicate through my family doctor. Doing ok. 😊😁😀
I firmly believe that our thoughts create our reality. I don't reject the notion that PD can be cured. What good does it do me to be told by my MDS that I'm going to get worse and worse, till one day I choke on my food or fall down the stairs, and that's going to be the end of me? If I do internalize this prediction, it will most certainly come to pass. So I focus instead on visualizing an active, healthy me. There' actually a name for this p.o.v.; it's called "new thought."
Hello, I love your notion of "new thought". I actually picture myself doing things that I need to do when I am OFF, little things like get up or move around. It does help. I agree, it's best to not think too much about the future. Something will get us in the end, but I want to have fun getting there.😊😁😀
His Sis 👋🧑 Ooooh soooo pretty!! I love the style of stickers. I am doing a life's journey diary soon as I will be 60 and I want to enter this milestone reflecting on my life's history 😊
It's called, "hitting a wall." My thoughts are like food. Some thoughts bring nourishment to my body, but some of it lands like a load of 💩. My own food choices really contribute to my experience, but sometimes it's what's been hidden in the food itself by somebody else, who made choices of their own, that speak stuff into my own life; Interconnectedness is a fascinating thing! For myself, I find that, when you're choosing to not look for trouble, trouble will choose to come looking for you anyways! I can "go with the flow", or choose resistance training, or I can develop a skill that resembles "riding the wave." Dying is a fact of life. Dying happens throughout each and every day. Hopes die, and a miracle you never saw coming draws you into yet another living moment! What an ADVENTURE we are each living!
Hi Rose, yes, dying is a part of living, I just want to enjoy life as much as possible while getting there. It would be great to not be troubled by dying for at least another 20-30 years. I have videos to make for goodness sakes!!!😊😁😀
I'm sorry that your doctor said that to you. There is always room for hope, keep trying. If you look at history (such as how penicillin was discovered) sometimes medical breakthroughs are just stumbled upon by accident! Maybe you will be the one to discover a way to end Parkinson's!
Thanks for the breakdown! I need some advice: I have a SafePal wallet with USDT, and I have the seed phrase. (alarm fetch churn bridge exercise tape speak race clerk couch crater letter). What's the best way to send them to Binance?
@LifewithParkinsons Hey David 👋👋 Oh I have the most annoyingist phone all I can do is say oooops sorry about that. I have no clue how my comment from a different video ended up on yours as I never watched it 🤦🤷
I take 200 mgs of Levodopa 8 times in 24 hours every day (through the night also so my tremor does keep me awake) do you know people who take. similar amounts or or more ... ? if the glove helps , does dbs work for you?
Hello, I take a bit more per day than you of L-Dopa, but it is so variable between people, it's almost not a fair comparison. I haven't had DBS yet. Here is a link to the VILIM ball for tremors if you haven't seen it yet. ruclips.net/video/9u6E46Y-SUg/видео.html
I've been told the only thing left is DBS. I have tremor dominant PD, but non-responsive to l-dopa. So DBS is all that's left, but really am reluctant to go there. Dave, what keeps you from getting DBS? I will look into the Valim ball! Thanks for your videos
Hi Granny, I have not met someone until now who is non-responsive to L-Dopa, definitely rare. At this time I just don't want DBS since it will but my off from future advancements, like vibration therapy. Here is a link to a VILIM ball video 😊😁😀 ruclips.net/video/Ls92hWHC36E/видео.html
@keithmorgan3295 I've been to 3 different (supposedly expert) Movement Disorder Specialist Neurologists, and they all tell me PD. I've had a DATscan which was positive for PD. But I am beginning to wonder after 6 years. Last week I decided to wean myself off Rytary (the l-dopa I'm on) to see what happens. I've also ordered the Vilim ball and will give that a try. Thanks for the feefback!
Sad but true. Thx David!
Thank you Jeremy 🙂😃😊
Excellent video. My wife has had PD now 12 yrs. Yes it has progressed. Diskinesia, falling, fatigue, anxiety….. So my goal is to take whatever symptom it is that’s impacting her the most and try to lessen it and find a longer term solution. For instance for constipation we got the Symbyx PDcare laser in combination with laxatives and more fiber. For fatigue we have focused on improving sleep. We have changed mattresses and pillows. Right now she is using a
HOMBYS Wedge Pillow. It has definitely helped. Without question the most beneficial thing for her is exercise. Right now she is in a 12 week 2X/wk PT program at a local hospital. They have focused on what’s challenging her the most like slouching after sitting for a while and getting in and out of bed. She has improved both. We are also big fans of the PD exercise channel Power for Parkinson’s. Yes the drugs can only do so much so I think you have to maximize what you can do to improve rest exercise, and diet. My mantra to her is celebrate what you can do and keep fighting.
Look up dr ardis and parkinson's. He's a game changer. You can thank me later.
Thank you for your comment, a beautiful portrayal of caring for each other no matter what! Very loving. I'm so glad you are able to help your wife reduce symptoms through partial remedies, I find it helps me a lot. Yes, exercise for is the #1 intervention. Would be lost without it.😊😁😀
Oh David, that's an appalling thing for your consultant to have said. If they can't think of anything at all to benefit a patient, maybe they need to reflect on their own career choices/ongoing professional development? Kudos to you for dealing with a blow like that with such positivity and grace of spirit and turning it into excellent things to advise, motivate and support the Parkinson's community. Thank you so much.
Hi Lorna. Thank you, it did take a bit of time to get over the shock and unbelief, but now it has turned into motivation to learn as much about PD as possible. There are actually lots of ways we can help ourselves. I will pack it into the playlist this video is in.😊😁😃
You're a great guy David you're an inspiration for me.….keep on fighting
Hi Mike, thank you so much😊😁😀
I've been at accepting the misery of PD for 6 years (I was diagnosed in 2019).
I have given up hope for a cure or breakthrough, from the beginning.
One can do more in life if you are not distracted by a constant absorption in false expectations, which always lead to disappointment and pain.
Give up hope and face reality - with open arms.
You will discover a release that is peace.
Sure, welcome the efforts of medical scientists to bring an end to this scourge.. no need to be negative. Give up hope AND fear.
My neurologist, who is a specialist in movement disorders, disowned me when I refused to continue be a "trial" of chemicals, aka medications, to which I had very strong reactions, "side effects" (oh! give me a break!! - side? - more like the main course!!) .
Love your wiggles, David. Stronger when you are worked up over something. Mine too.
Hi Alec, good to hear from you. Yes, this one got me worked up a little more than usual. It's tough to go to support group and hear someone else tell the same story(don't come back their MDS said). Where is the BC medical system headed? 😊😀😁
Thanks for this post …. A challenging time in the medical world indeed. Keep up the good work!
Thanks, Mark, It us a challenging time. How did we get here?😊😁😀
Dave, inspiring message. May Hashem bless you and Haly.🧎
Thank you David. Blessings to you also 🙂😃😊
Oh man that is not good my friend. The doctor really said that!! Shocking to say the least. You are doing great and your knowledge is top notch. I hope you can find another mds, perhaps at ubc.
Thanks GoPro, I will leave no stone unturned in the search! Not too worried about an MDS at this moment, I just have to communicate through my family doctor. Doing ok. 😊😁😀
@ awesome brother ❤️😆👏👏👏👏👏
I firmly believe that our thoughts create our reality. I don't reject the notion that PD can be cured. What good does it do me to be told by my MDS that I'm going to get worse and worse, till one day I choke on my food or fall down the stairs, and that's going to be the end of me? If I do internalize this prediction, it will most certainly come to pass. So I focus instead on visualizing an active, healthy me. There' actually a name for this p.o.v.; it's called "new thought."
You need to look into dr ardis and parkinson's disease. He's a game changer and is helping me so much! God bless you and have a wonderful day. ❤️🔥😇🙏💜
Hello, I love your notion of "new thought". I actually picture myself doing things that I need to do when I am OFF, little things like get up or move around. It does help. I agree, it's best to not think too much about the future. Something will get us in the end, but I want to have fun getting there.😊😁😀
His Sis 👋🧑
Ooooh soooo pretty!!
I love the style of stickers. I am doing a life's journey diary soon as I will be 60 and I want to enter this milestone reflecting on my life's history 😊
Hi Tory, not sure what stickers you are talking about?😊😁😀
It's called, "hitting a wall."
My thoughts are like food. Some thoughts bring nourishment to my body, but some of it lands like a load of 💩. My own food choices really contribute to my experience, but sometimes it's what's been hidden in the food itself by somebody else, who made choices of their own, that speak stuff into my own life; Interconnectedness is a fascinating thing!
For myself, I find that, when you're choosing to not look for trouble, trouble will choose to come looking for you anyways! I can "go with the flow", or choose resistance training, or I can develop a skill that resembles "riding the wave."
Dying is a fact of life. Dying happens throughout each and every day. Hopes die, and a miracle you never saw coming draws you into yet another living moment! What an ADVENTURE we are each living!
Hi Rose, yes, dying is a part of living, I just want to enjoy life as much as possible while getting there. It would be great to not be troubled by dying for at least another 20-30 years. I have videos to make for goodness sakes!!!😊😁😀
I'm sorry that your doctor said that to you. There is always room for hope, keep trying. If you look at history (such as how penicillin was discovered) sometimes medical breakthroughs are just stumbled upon by accident! Maybe you will be the one to discover a way to end Parkinson's!
Hi Linda I would be so grateful to contribute to a cure for Parkinson's 😃😊😄
Dont quit but keep adding to your physical therapy
Thanks Bradley, I will push through.😊😁😀
Thanks for the breakdown! I need some advice: I have a SafePal wallet with USDT, and I have the seed phrase. (alarm fetch churn bridge exercise tape speak race clerk couch crater letter). What's the best way to send them to Binance?
I'm sorry I don't know😊😀😁
May I ask where you bought those beautiful stickers/cards from?
Hi Tory, not sure what you are asking about? If it's the graphics they are widely available on the internet.😊😁😀
@LifewithParkinsons Hey David 👋👋
Oh I have the most annoyingist phone all I can do is say oooops
sorry about that. I have no clue how my comment from a different video ended up on yours as I never watched it 🤦🤷
@@toryberch No worries
I take 200 mgs of Levodopa 8 times in 24 hours every day (through the night also so my tremor does keep me awake) do you know people who take. similar amounts or or more ... ? if the glove helps , does dbs work for you?
Hello, I take a bit more per day than you of L-Dopa, but it is so variable between people, it's almost not a fair comparison. I haven't had DBS yet. Here is a link to the VILIM ball for tremors if you haven't seen it yet.
ruclips.net/video/9u6E46Y-SUg/видео.html
@@LifewithParkinsons Thanks I will have a look ... Canada
@@newworld6474 Nice, I'm in West Kelowna BC
What bugs me the most they go to Mars and can't cure PD
I know Mike. I don't get it also🙂😃😊
I've been told the only thing left is DBS. I have tremor dominant PD, but non-responsive to l-dopa. So DBS is all that's left, but really am reluctant to go there. Dave, what keeps you from getting DBS?
I will look into the Valim ball!
Thanks for your videos
Hi Granny, I have not met someone until now who is non-responsive to L-Dopa, definitely rare. At this time I just don't want DBS since it will but my off from future advancements, like vibration therapy. Here is a link to a VILIM ball video 😊😁😀
ruclips.net/video/Ls92hWHC36E/видео.html
Isn't non-responsiveness to levodopa often an indication that you are dealing with a condition that mimics but isn't PD? That's my understanding.
@keithmorgan3295 I've been to 3 different (supposedly expert) Movement Disorder Specialist Neurologists, and they all tell me PD. I've had a DATscan which was positive for PD. But I am beginning to wonder after 6 years. Last week I decided to wean myself off Rytary (the l-dopa I'm on) to see what happens. I've also ordered the Vilim ball and will give that a try. Thanks for the feefback!