Parkinson's - Stuck in my body

Join me on this journey as I talk about what it's like to be stuck in this body with Parkinson's Disease.
Check out our website! - lifewithparkin...
Connect with us on Facebook - / davidslifewithparkinsons
I've included some helpful links in the video description.
NexStride - the award winning mobility device built for people with Parkinson's. Use the code to save 10% off your order and support Life with Parkinson's indirectly. USA only.
yes.getnexstri...
If you're in need of some comfortable bedding or pillows, check out Comfort Linen: comfortlinen.c... They offer high-quality, affordable bedding that's perfect for anyone living with Parkinson's.
Additionally, if you're looking for some high-quality Red Light Therapy products, take a look at Rouge Care: rougecare.ca/?...
If you're interested in finding out more about Kizik shoes, check out my affiliate link: kizik.sjv.io/7... These shoes are a game-changer for anyone living with mobility challenges.
For all of your aches, pains, and strains of Parkinson's Disease, BraceAbility is there to help you. With their dedication to quality, as well as quick worldwide shipping options, you don't need to worry about getting your order on time.
www.anrdoezrs....
#parkinsons #parkinsonsawareness #parkinsonsdisease #yopd #youngonsetparkinsonsdisease #dystonia #vibrotactiletherapy #parkinsonsglvoves #mci #cognitiveimpairment #nexstride #gait #parkinsonsboxing #rocksteadyboxing

[@mommerang]

Thank you for your honesty and openness. Don’t ever change!

[@LifewithParkinsons]

Hello, thanks for letting me know. Planning to stay the same.😀😁😊

[@angelakindon9839]

You help Me cope so much!

[@angelakindon9839]

Have you had dBs?

[@LifewithParkinsons]

@@angelakindon9839 Hi Angela, so happy this channel helps you to cope!

[@LifewithParkinsons]

@@angelakindon9839 Hi Angela, no dbs yet, but I am on the waiting list.😀😀😁😁😊😊

[@user-qs7pr3zk8m]

I appreciate your ability to be honest and point out that while you (and we) try to stay positive, PD is can be very challenging. Yes, we have a right to be down, or even angry or frustrated at times, talking about it sometimes assists us in the process of making it through the hard times. I feel so lucky to have a supportive partner, especially when I can get overwhelmed. I am only 2 years into this journey, but am experiencing several new symptoms. symptoms. I will be seeing my Neurologist/ MDS next month and am hoping to talk about what options he may have for dealing with these new challenges. Thanks for sharing. It does help me to feel validated, and more positive.

[@LifewithParkinsons]

Hello, thank you for your kind words and encouraging comment. I am fortunate to have a supportive partner also, very important. Talking about the anger and frustration is always better than lashing out. I hope your medical team can help you stay ahead of the progression.😀😁😊

[@MikeMercury]

david I love your positive attitude and sense of humour

[@LifewithParkinsons]

Thanks! I love doing these videos.😀😁😊

[@Dstew57A]

Glad to have found your channel. My Dad had Parkinson’s. My Doctors are watching me now for signs. I do have tremors and Dystonia’s in my voice and my head shakes like a bobble head doll. I also have some balance issues. Thank you for posting your videos. I like your style of delivery. 😊 indeed accepting the truth of the situation with humility and humor works best I think

[@LifewithParkinsons]

Hello, I am glad you found my channel also. Let me know what the doctors figure out for you. I agree, accepting the truth of the situation is always better.😀😁😊

[@leonardgebhart2064]

Thanks for the video David,, very well done. ❤

[@LifewithParkinsons]

Glad you enjoyed it Dad! Thanks for watching.😀😁😊

[@daman4589]

Wow David great video and your symptoms seem similar to me. I do not know about others but you summed up my story and good pointer about the positive attitude ...we are living is as positive anyone can be and we feel like hitting head into the wall how much more positive anyone can be..

[@LifewithParkinsons]

Hi Daman, that's cool are symptoms are very similar. I agree with you that we are living as positive as we can, despite that battle we face each day. Sometimes I want to smash my head against the wall before I feel better, lol.😀😁😊

[@4merLawman]

Stay strong my friend, i was diagnosed a little over. a year ago. I'M taking the ladopa 3 time s a day. i have minor tremors in my right arm , the cold really effects me. i guess the major issue i am experiencing is the drooling , its embarrassing but i'm dealing with it .

[@LifewithParkinsons]

Hi Lawman. Thanks for saying hi and for sharing your experience. Yes, the drooling is quite annoying, especially when I'm hungry. I find the cold makes me feel a lot better. It's the heat, even a warm drink that bothers me.😀😁😊

[@angelakindon9839]

Thanks!

[@toryberch]

Thanks Angela for supporting David's channel 😊 he really does deserve the Super Thanks ❤❤

[@LifewithParkinsons]

Thanks Tory😁😀😊

[@LifewithParkinsons]

Hi Angela, thank you for your support!😀😁😊

[@sharoncribbs7516]

Thank you for sharing. I think it would be just about impossible to have a good attitude every day with some if the symptoms you have. I don't know what's coming down the road for me as far as symptoms getting more intense, but I hope I can keep my sense of humor as well as you do! Thank you for anther awesome video and I hope you have better days ahead.

[@LifewithParkinsons]

Hi Sharon, a positive mental attitude is difficult at times, but I have a lot to look forward to, like this channel. Those things keep me going.😀😁😊

[@JeremyMcdonald]

I would like to trade my body in for a new one, too! Great video, bro!

[@LifewithParkinsons]

Thanks Jeremy, it was a fun video to make.😀😁😊

[@shsharrell9267]

Well that was being really real. Maybe not positive, but truthful. It doesn't do any good to hide from PD or being so positive that you're lying to yourself and everyone listening to your story. We want the truth even though it's hard for you to say and us to hear. I want to tune in and hear that all your symptoms are better. Reality is that it's a progressive disease. Don't give up on a cure. Have you thought about DBS? They are getting better with it and learning more all the time. I wish you more better days than bad and waiting on that cure. Thank you for sharing your experience with us.

[@LifewithParkinsons]

Hi Sharrell, yes, I like the real videos because I feel we all struggle with the reality, and fake positive is never nice. I tried once to hide from Pd under the table, but it didn't work. Yes, it is a progressive disease, but thankfully there are more ways to deal with the symptoms if you are willing to really dig. I have met a few people now with DBS and I'm not sure yet if it is for me at the moment. The people who I met had good results, but were still struggling to stay ahead of the disease. I am having good results with the gloves combined with the red light therapy.😀😁😊

[@ASHEEHAN]

Hello David!!!! I always like the truth I got a new neurologist/MDS. He gave me a new diagnosis: MSA-Parkinson's.

[@LifewithParkinsons]

Hi Ann! I like the truth also. I will have to look up MSA-Parkinson's. Thanks for letting me know.😀😁😊

[@LifewithParkinsons]

Hi Ann, I looked MSA-PD. That's a tough diagnosis for sure. I did not know it existed. Thank you for letting me know. I know it's been difficult for you from your previous comments. I am grateful to be able to share some of this journey with you.💗

[@user-qs7pr3zk8m]

I am only a little over 2 years into this journey, but I appreciate your description of what you are going through, your honesty, and how it is feeling. Our future will be bringing many more challenges, but I want to also be as positive as I can. I always look forward to your thoughts, experiences, and how you have addressed each of these as they have appeared. It is very helpful. Take care…you and your family. And… Happy Halloween!

[@mohsinsheikh8076]

Hi David. Glad to see you back on KZbin. I also have same, Wondering have you explored different complimentary treatments and therapies. Have you explored Vitamin B12, B1 etc. Have you come across treatment via fasting and having no solid meals, Have you tested community participation activities, neurofeedback and neuroplasticity, remedial massage, myotherapy, osteopathy for afferent and efferent nerve signals, yoga, tai Chi, various exercise, walking etc

[@LifewithParkinsons]

Hi Moshin, I have tried many different things, but the one factor that I found is most important is that the therapies/treatments must somehow interact with the brain on some level. For me, at this time, the best results I have found are the PD Gloves combined with the red light therapy. Of course, exercise is key, as well as diet and self care. HIIT is difficult at the moment due to my heart murmur.😀😁😊

[@toryberch]

Hey David 👋😃👋 Oh I know what the tight clenched jaw feels like 😮😩 And ya sometimes you just have to let go and roll with the situation til it passes don't fight it.

[@LifewithParkinsons]

Hi Tory, I was wondering if you would connect with the jaw clench. The only relief I have found is to massage that nerve.😀😁😊

[@robertmedof7844]

Thank you for sharing your story and not giving up trying to find your way to the other side of your symptoms. Your doing all the hard work and research, so thank you for that also. I have watched most of the episodes and seen you try different regimens to get back to better health. Does any of it really work for you long term to improve your health? Have any of these things made any specific symptoms go away for an extended period of time? With regards to the positive mental attitude I follow a great phrase by motivational speaker Zig Ziglar "Positive thinking won't allow you to do anything, but it will allow you to do everything better than negative thinking will.".

[@LifewithParkinsons]

Hi Robert, thanks for a great comment and fantastic question. I may use your comment in a video if that's ok, just to answer this question to everyone. Let me know. Yes, I have tried everything possible to help with the PD symptoms. Does anything work long term? Well, yes and no/maybe. I don't know about long term yet as most things I have been using 1-2 years max. Yes, Comfort Linen helps me sleep better each night. Without it I would not be able to get out of bed or turn over sometimes. A top notch product. Been using it for about 1.5 years. lifewithparkinsons.ca/pages/bedding Yes, Rouge Care Canada has fantastic red light therapy products. Feedback from purchasers is all positive. Been using about 8 months. lifewithparkinsons.ca/pages/red-light-therapy Yes, NexStride is an amazing device. When I am completely off I can walk and use it for mobility. Have had mine for about 5 months. lifewithparkinsons.ca/pages/a-mobility-solution-nexstride Yes the PD Gloves are just beginning to work now that we have a usable/reliable prototype, but I've had it since labor day. Results so far, very good. Hoping to update this weekend. Con - you have to arrange making them yourself. Supplements - still use most of them from the original video, but it needs an update. When inflation hit and some of my meds almost tripled, had to give up a few of them due to affordability. The question came down to, do we like a roof over our heads or should we buy these supplements? Through my research and trying things on myself, I have found that what you use must somehow affect your brain to have any beneficial affect. All of the vendor products I recommend do that in some way, except Comfort Linen I suppose. Thank you Robert!😀😁😊

[@MikeMercury]

hello david

[@LifewithParkinsons]

Hi Mike!

[@johnp.2614]

Very difficult to keep a positive attitude when formerly easy tasks become challenging. Compounding the issue is many times others around you don’t realize how difficult it is. For instance, getting dirty looks at the grocery store for holding up the line because it takes time to put my wallet away. No doubt about it this disease sucks more than we can put into words. My neurologist tells me there is a lot in the”pipeline.” Unfortunately, I feel it is unlikely that anything will work, especially since C/L is still the gold standard after more than 50 years. Also sometimes I feel that some of these researchers are just looking for a paycheck from grants awarded by various Parkinson’s foundations.

[@LifewithParkinsons]

Hi John, I have many of the same feelings you have. Despite PD being one of the fastest growing neurological conditions in the world, it is still very much under the radar of the general population. Before diagnosis I only knew Michael J Fox, that was it! The PD Veterans usually say the same thing as your neurologist, they have been told for many years there is a lot in the pipeline. Check out the gloves and the red light videos. Getting good results with those two combined. Note- my mds did not know about either of them. Thanks! 😀😁😊

[@James-ws6du]

2019 was the start of my battle they always tell me exercise exercise well i do but it sill is hard sometimes had my first freeze awhile back could not make it to the bathroom in time it sucks

[@LifewithParkinsons]

Hi James, yes, exercise is important. Glad to hear you are keeping up with it. If freezing becomes more of an issue there is always a possibility that the NexStride device may help. Not sure if you checked it out. I get freezing episodes daily now. kzbin.info/www/bejne/fHLChGqpftx4i6M

[@alecspeer]

There is no "positive attitude" with PD. The best one can do is to not have a negative one. Being negative brings a landslide of more negativity and locks you in harmful mental spaces. You can make the best of a difficult situation, but being really "positive" in this sense is the belief that one will make it through the day. Acceptance accompanied with a determination to use the tools, such as exercise, helps to mitigate the power (symptoms) that PD open-carries constantly. Does anyone remember what "normal" actually feels like? My neurologist assures me that there is no cure just around the corner, although there is a lot of effort. If it comes in my "getting older by the day" lifetime, great. I'm not spending my time waiting.

[@luanndavis-jindela3223]

😅😅 5:51

[@LifewithParkinsons]

Thanks Luann, I really was scared the batteries might be dead.😀😁😊

[@LifewithParkinsons]

Hi Alec, good point about not having a negative attitude, because it just drives people away. I love your comment, " Acceptance accompanied with a determination to use the tools, such as exercise, helps to mitigate the power (symptoms) that PD open-carries constantly." Excellent point. No I don't remember what normal feels like as it changes each day.😀😁😊

[@Daissweetest]

Botox will help in the jaw or other areas, I get Botox in lower legs and feet for cramps helps 100%. You have to find a Neurologist for shots.

[@LifewithParkinsons]

Thanks for the tip!😀😁😊

[@toryberch]

Where's Kiwi 😃 I've missed seeing him

[@LifewithParkinsons]

I will have to see when Kiwi is available for a cameo LO😀😁😊

[@toryberch]

@@LifewithParkinsons Woot Woot 🎉🖐️😁

[@ellenquintero6]

So gloves failed?

[@LifewithParkinsons]

Hi Ellen, no the gloves did not fail. I have gained much from them so far, but there are still difficult times despite the benefit. For example, my 'on' time is up two hours a day, but I still have 'off' times. I hope that helps. A full update will come soon.😀😁😊

[@ellenquintero6]

Can I ask r matching fingers like right pinky left pinky supposed to vibrate at same seconds etc so each hand exactly mirrors other at all times when wearing gloves ? I think to do that one shared controller for both hands is best

[@LifewithParkinsons]

Hi Ellen, yes both hands should be perfectly synchronized. One controller for both hands is best.😀😁😊

[@ellenquintero6]

How long do u use gloves for daily please? Do u think we really need 4 hours day?

[@LifewithParkinsons]

@@ellenquintero6 hi Ellen. I try to aim for the 4 hours per day it really seems to make a difference for me. I don't always make it but you have to do what works best for you

[@ellenquintero6]

@@LifewithParkinsons can I have ur email to send u photo u requested - so 3 hours day not as good as 4 for you? How many months r u on it pls?

[@LifewithParkinsons]

Hi Ellen, I have been using my synched gloves since Labor Day, Sept 4. A total of 11 weeks. [e-mail] is my email

[@angelakindon9839]

Thanks!

[@LifewithParkinsons]

Thank you so much for your support, Angela😀