Keep up the great job sir. I agree with you 120 %. Thank You for what you do. Demetrio diagnosed 9/2015.....

@LifewithParkinsons

Ай бұрын

Hi, thanks for your kind words and comment..😊😁😀

Hindsight is 20/20. If I were to look back my first symptoms it was 10 years before my diagnosis. So I have had this PD over 15 years. Wow!! Keep talking to us David-your videos are very informative and sometimes entertaining. I enjoy them all.

@LifewithParkinsons

Жыл бұрын

Hi Ann, just found your comment, lol the computer flagged it for some reason. Wow 15 years can change us a lot

I'm a caregiver of mom with PD for almost 14 years now. I arranged for her to get DBS a few years ago, then Covid happened and we couldn't get it until May of '21, and programming is still ongoing. It's helped a lot (sometimes as much as I had hoped, sometimes not--I had dreams of possibly being able to move out, but the improvement wasn't that good). One thing I've noticed is that her DBS neurologist (at least until recently) had paperwork before every appointment to check off our main concerns for the appointment, with a list of 75 or 100 symptoms or difficulties, most of which I had discovered myself over 10 years of caregiving, but which had never been addressed or discussed by any doctor previously. Most of the time neurologists are concerned with walking so you don't fall down and hurt yourself. Then they are concerned about constipation, anxiety, depression, maybe blood pressure. But just seeing that long list, and knowing mom had at least half of those things at one time or another, and several now, made me realize someone out there understands Parkinson's as well as I do...and it gave me a little hope. Her local neurologist is great too. He put her on the right path on many occasions. But there were a couple of things I knew that he didn't know (phantom smells, for example--hallucinations of the smell of smoke is extremely common, but other smells also...mom would sometimes smell fabric softener from the dryer downstairs even though no one else could...so we stopped using it...and the complaints of the smell continued randomly, she doesn't have that complaint anymore but occasionally complains of a random smell no one else can smell).

@LifewithParkinsons

6 ай бұрын

Hello, I just learned about the phantom smells a little while ago. It is crazy how many PD symptoms there are. It is nice that you can help your mom so much. I have heard from many lately that have had issues with DBS. I hope you are able to help manage her symptoms, thanks for saying hello and sharing.😀😊😁

@greyeyed123

6 ай бұрын

@@LifewithParkinsons The DBS isn't perfect, but is much better than without it. Before the DBS, she was taking meds every 65 minutes with random bursts of energy/obsessive cleaning, and then random severe off time, several times a day. We're down to every 1 hour and 35 minutes during the day, and two controlled releases over night (one at 10:30, and one at 3:30, giving me five hours of uninterrupted sleep between doses--something I haven't had for years). She has 3-5 hours most days with no outward symptoms. Her memory isn't great, and there are still some overactive "on" time and mild "off" time, but nothing like it was before (in severity or frequency). And the doctor is still fine-tuning it. She's almost 14 years after diagnosis now, and without the DBS she wouldn't now be able to still be at home. We're lucky enough to afford a caregiver 4 hours a day to help her with bathing, laundry, food prep, meds, etc., when I am at work during the day. And I'm there there the rest of the time. I'm a teacher, so all of my "down" time from teaching is caregiving. I was reluctant about DBS at first, but in December of '19, she couldn't get out of bed by herself. In February 2020, I started the ball rolling on DBS, but Covid slowed everything down after that.

@LifewithParkinsons

6 ай бұрын

@@greyeyed123 Ok that's good that the DBS has helped that much and you can are able to bring in some help😀😀😊😊😁😁

Totally agree with everything you are saying👍👍☹️☹️💞💞

@LifewithParkinsons

Жыл бұрын

Hi Brenda I think your emojis say it all. Thank you for your comment and for taking the time to say hello glad you are watching. 🙂🙏❤️

Thank you😊

@LifewithParkinsons

11 ай бұрын

You are most welcome 😊😎😀

Thank you for your helpful comments. Keep it up.

@LifewithParkinsons

Жыл бұрын

Thank you for your kind words Nick!😀😁😀

Very true thanks for sharing it will help the newly diagnosed ask the right questions.

@LifewithParkinsons

Жыл бұрын

Thanks Troy. Glad you enjoyed it thanks for saying hi 😃😁😃

Another good video David. Thank you.

@LifewithParkinsons

Жыл бұрын

Thank you very much Sharon I hope you are doing well. 😁😀😁

I will say it again , I don't know how you do it . Put it together so well . So difficult to find someone that can relate or feels like they care .

@LifewithParkinsons

Жыл бұрын

Thanks Jerry that's an amazing compliment. I'm so thankful I can share my journey with you and others. 😃

@ Planet Fitness there is a machine called a :Smith". It is a safe bench press. I have the same set of symptoms as you. working from just the bar to as much as I can lift has done wonders to these non motor symptoms.

@LifewithParkinsons

Жыл бұрын

That is fantastic George thank you for letting me know. Yesterday I went for a 4 km walk and today I did 3 hours of housework while wearing additional weights. Exercise makes a load of difference 👍😊😎

Just found your channel. New subscriber here. My dad has Parkinsons. You are doing a tremendous service in helping others by sharing your experiences, ups & downs, insight, etc....Thank you & stay strong. 🙏

@LifewithParkinsons

Жыл бұрын

Hi RG. I am sorry your dad has Parkinson's but on the other hand I'm glad you found this channel thank you for taking the time to say hello and leave a comment☺️🙂😃

Thank you for the information. 🙂 Trying share your video to all my groups.

@LifewithParkinsons

Жыл бұрын

Thank you so much Andy. I hope it helps 😃😃👋

Thanks for sharing with us . Very interesting video

@LifewithParkinsons

Жыл бұрын

Hi ASMA, thank you for watching😀😁😀

Thank you for the inspiring talk. Im also diagnosed with PD but i suffer the symptoms for about 3-4 years it so difficult for me i consulted a Doctor for bones and muscles then endocrinologist psychiatrist lastly the Neurologist and we discovered that i have a PD. At first it is hard to accept that PD is not curable im 43 years old and taking medication 3x a day levodopa carbidopa and kenzar.

@LifewithParkinsons

Жыл бұрын

Hi Nanel, I was also diagnosed at 43 years old. Tough situation, lots of changes that I wasn't ready for. Though it is not curable there are many things we can do to help. Thanks for saying hello, leaving a comment, and watching.😀😁😊

Love your videos. Still learning about this PD also brain shunts for NPH. Symptoms are all same. Don’t have too much in tremors but right foot was a giveaway. It Danced 🤣🤣… according to my son

@LifewithParkinsons

11 ай бұрын

Hi Susan, thanks for letting me know and for saying hello. I love the dancing foot ! That is an amazing observation by your son. 😀😁😊

😊

@LifewithParkinsons

Жыл бұрын

😃

I'm not tremor dominant, but I am starting to already get dyskinesia from the medication. Luckily, I just had my neuro appt with the MDS this week and he confirmed. So I've added another med to my list to counteract the sinemet. I'll prob make a vid tomorrow. Good info in this video!

@LifewithParkinsons

Жыл бұрын

Thanks Michele, I am curious as to what medication you are taking to battle the dyskinesia? Looking forward to your video.

Thinking on this as I’m watching. I wonder if it’s similar to “gating” pain signals. When we hit a thumb with a hammer we automatically shake it, blow on it, squeeze it, etc until the pain dulls. Or with a mosquito bite it helps to scratch around the bite vs scratching the bite itself. That’s also why cold and heat tend to relieve pain. These signals are much stronger and travel to the brain faster than pain. Vibrating would activate mechanoreceptors in the skin and bones (Merkle cell, Pacinian corpuscle, Meissner corpuscle, and Ruffini corpuscle). That may act to calm the CNS and essentially block the abnormal nerve impulses due to PD?

@LifewithParkinsons

Жыл бұрын

Hi Michael, since I've been using my homemade gloves, I have been doing them at regular time intervals, and now my brain gets angry if I don't turn the gloves on at 7pm in the evening, and 5am in the morning. Had a super bad off yesterday morning because I used the gloves much later than 5AM. Update coming in the next couple weeks.

Thanks haven’t been diagnosed as of yet. But have the stiff muscles. I keep asking doctors for muscle relaxers but told if you’re over 65 they won’t prescribe relaxer. Had vertebrae surgery will be 5 years this next August. I had six vertebrae fused lots of leg nerve damage told at that time now I think the damage is a compound damage. Neurologist tested my leg nerves but never said anything about the stiffness and foot gate lack of foot coordination. Just had a second shingles shot nurse had to pull my are away from my side to loosen the stiff muscle holding arm tight. In order to give me the shot. My dreams are so vivid like I am there onetime worms with teeth were biting in between my toes and woke up kicking to stop the bites. Woke up with a lady in my dream still coming out of dream opened eyes she still was sitting next to me I said something to her and slowly she faded away. I hear you all the medical people just do their job but don’t or can’t really relat to what’s going on so was great to hear how candid

@myleswhite1792

Жыл бұрын

Hit the send arrow by mistake. My main point Ibwant to thank you for sharing your experiences helps me not to feel so alone. Most people I talk with want to run a 10:54 way from hearing about my pain. So Thank you again.

@LifewithParkinsons

Жыл бұрын

Hi Myles, you are most welcome, thank you for sharing your story and for taking the time to say hello.😉😁😊

@LifewithParkinsons

Жыл бұрын

Hi Myles, I hope your medical team can determine what treatments you need. Thanks for watching, and for your encouragement😁😊😀.

Dave hearing stem cell treatment is helping with parkinson. I have small head tremor and twist but have really improved by changing everything from going low sugar. walks. breathing. posture. sleep. supplements. two meals a day. one coffes limit. all helps. i take 20,000 iu d3 daily with heavy magnesiums b1 b6 b12 and mistly keto diet. no drinking. all helps

@LifewithParkinsons

Жыл бұрын

Hi Tony. I'm glad you've found a regimen that works for you. I have done much of what you have mentioned as well. No sugar and alcohol has helped a lot. Thanks for saying hi👋😊

@RoryVanucchi

Жыл бұрын

@@LifewithParkinsons i found its like a thousand bad habits ive had my entire life. nervous habits like rocking kr breathing through the mouth. temper. snacking. you need to think back on every single bad habit and work on each one. i noticed when i walk or stand that my head needs to be centered and straight and even my eyes looking up. its a work in progress but afterr 10 years im grateful for every little victory. good luck and keep trying ideas and watching videos.

@LifewithParkinsons

Жыл бұрын

Hi Tony, that's a good description about finding all the bad habits and trying to change them. Yes, I have the problem of centering my head as well. Red light therapy has helped a lot with that.

Hey David , I was just checking on the #World Parkinson's Day and when that was going to still be posted?

@LifewithParkinsons

Жыл бұрын

Hey Tory. Good reminder. I put out an update video a little while ago to let people know I extended submissions to April 10. I'll put a post up as well. thanks 🙏👍

@LifewithParkinsons

Жыл бұрын

kzread.info/dash/bejne/ZHZ7vLCfeZTYlbg.html

@toryberch

Жыл бұрын

@@LifewithParkinsonsOh ok thanks David 😃 I'm looking forward to seeing everyone's story

@LifewithParkinsons

Жыл бұрын

@@toryberch Thanks Tory, me as well.

I struggle with the informationn overload

@LifewithParkinsons

10 ай бұрын

Yes, too much at once can be overwhelming. 😀😎😊