#101

Рет қаралды 6,190

2 ай бұрын

In this episode, we bring back Dave Kolbe from Episode #11. Dave has had Parkinson's for 9+ years and is still living his best life! Hear the advice and tips he has to those of us who are newly diagnosed (or those who are years in!).

Пікірлер: 41

@xjet 2 ай бұрын

Just like Dave, I find that regular workouts (resistance training and walking) is crucial in my management of PD. Also, like Dave, I find that dystonia and sleep are my biggest problems. It's coming into winter down in this part of the world right now and I am not looking forward to being unable to do my regular 10Km walk due to bad weather. I've found that after a few days without walking (steady-state cardio) my symptoms worsen noticeably. For this reason, I *love* the summer 🙂

@thesecretlifeofparkinsons 2 ай бұрын

Couldn't agree more!

@Michael-he7xn 2 ай бұрын

Great interview guys. “Ya just gotta do it.” Dave’s a wise man. 👍

@user-mw5sg2ts8z 14 күн бұрын

Yep I love you 💞

@pault6940 2 ай бұрын

Great guest. Very well spoken.

@malcolmhiltz94 2 ай бұрын

Thx for the podcast! As always, this episode is very enlightening. I just received my 3rd Botox injection yesterday from Dr. Patel to help reduce my toe curling during my runs & walks. It really seems to provide a lot of help during the runs--- not as much with the walks. Still, I highly recommend at least discussing this with your neurologist if you have Dystonia in your foot/toes. On a different note, I had a cavity filled by my dentist on Monday & while I was waiting in anticipation, my entire right side was greatly shaking due to tremors. Was embarrassed & quickly explained that I had PD & was nervous. The staff was understanding but it really bothered me. Stress & PD combined really stinks.

@gferriott 2 ай бұрын

Amen to that! PD Sucks! I get the same thing when stress comes around.

@Ray-vl2kt 2 ай бұрын

Your conversations helped me feel better today. I'm glad we are all together and always learning about this disease.

@matteagles35 11 күн бұрын

Love these shows , I have lived with Parkinson's for over 50 years , im always learning

@Lenteja77 10 күн бұрын

50 years???? How old are you?

@thesecretlifeofparkinsons 3 күн бұрын

Wow! 50 years!

@matteagles35 20 сағат бұрын

@@Lenteja77 55 i was diagnosed on my 7th birthday in 1975 but i obviously had symptoms before

@StacieHitchcock-pg4qz 2 ай бұрын

I don’t have tremors but Bradykinesia & dystonia. I had focused ultrasound done 3 years ago and it cured the dystonia in my left foot.

@eleanortrebicki3694 2 ай бұрын

Thank you for another wonderful podcast. You both make it easier to deal with our problems

@thesecretlifeofparkinsons 2 ай бұрын

Thanks for listening!

@paula4409 2 ай бұрын

Thank you!

@mbkimber 2 ай бұрын

Thank you for a very informative session. The two key points to me were the importance of exercise and scuba diving. As a scuba diver, I did not know that DBS curtailed your diving. Since I live in Cairns, Australia, gateway to the Great Barrier Reef, that is really important information. My PD diagnosis was less than a year ago, but now that I know I have PD, my wife and I can recognise that I have shown some symptoms for at least 5 years, possibly even 10 years. Arthritis leading up to a bilateral knee replacement operation probably masked these symptoms. I still work two days a week as an online course teacher and plan to keep doing that as long as I can. At 77 years young, It keeps my brain active and the contact with students and university colleagues is very important to me.

@thesecretlifeofparkinsons 2 ай бұрын

I'm glad this was helpful! I know a lot of people who had issues that masked PD symptoms. Glad you are doing well!

@carmelwaldron3045 Ай бұрын

Dystonia in my toes is corrected by taking a cannabis and THC pill. It miraculously straightens my toes After meeting with a medicinal cannabis therapist he recommended this. This is used for those with cerebral palsy. Miracle drug for my Dystonia. I never feel high. Can wear shoes now. 👏🏻👏🏻👏🏻👏🏻

@Lenteja77 10 күн бұрын

I’m more or less like Dave. After 12 years with PD I didn’t qualified for HIFU and I resisting DBS

@Jamtickle 2 ай бұрын

Dave rocks and is an inspiration to us all!

@cborland9563 2 ай бұрын

Brian, I’m so glad you said your toes lift up! Mine do too! I was worried because everyone else say they curl down.

@davea5794 2 ай бұрын

I was diagnosed 7 year ago, at the age of 46. I'm scheduled to have DBS on June 17th.

@jnm.624 2 ай бұрын

God's speed !

@thesecretlifeofparkinsons 2 ай бұрын

Good luck to you!

@sandrasegal3163 9 күн бұрын

I hope you are doing well with DBS.

@davea5794 8 күн бұрын

@@sandrasegal3163 Thank you! Both surgical procedures (implanting the electrodes & implanting the pulse generator) went smoothly. I have an appointment, next Wednesday, to turn on the device.

@user-ib6cl4qf4o 2 ай бұрын

The other problem that my team in Chicago in 2020 told me was that the ultrasound is only an option if your tremors are limited to one side of the body. Since my tremors were on both sides it was DBS for me.

@gferriott 2 ай бұрын

Great episode guys. I like the guest. He was really good. I looked up the book and I think it's "Younger Next Year". I bought it as a audio book and it's amazing. You guys would love it Anyone with this condition would understand what they're talking about. I was diagnosed three months ago. However, I've had symptoms for about 2 years. Just. learning about all this stuff, but the exercise is key for sure. I'm 63 and still working full time. So it's something I really Appreciate. Keep up the good work.

@thesecretlifeofparkinsons 2 ай бұрын

Thanks!

@jackmcloraine5354 2 ай бұрын

Great segment

@adamh9191 Ай бұрын

Awesome episode!

@jnm.624 2 ай бұрын

Like Dave, I have more discomfort w dystonia. Have you had a podcast just dealing w that? My hand is crippled w it & my foot is following

@PLSRubyforestStudio 2 ай бұрын

Yes, I'm also wondering about a podcast on dystonia. I have had some disruption of a cramping session coming on using yoga toes (rubber spacer thingy that you stretch over each toe). Waterproof so you can also wear it in the shower, which seems to be a trigger for me when my dopamine level is still low in the morning. Also he said insomnia is his other challenge. I'm wondering if the increased dopamine had helped that. My neurologist has suggested a slow acting dose in the evening, but I haven't wanted to increase due to dyskinesia concerns. Great guest, gave me a boost to keep at the exercise and increase to daily.

@thesecretlifeofparkinsons 2 ай бұрын

I know Dave will love to hear that! And yes, we can do a podcast on dystonia! I have the perfect person to do it! More to come!

@garymoore3159 2 ай бұрын

I am a Canadian and was diag'd with PD 6 years ago. 18 months ago I had DBS surgery. For 12 months I was medication free. I have started on 100/25 Levo. Recently, I have experienced double vision. Has anyone out there had PD double vision, what did they do to reduce/stop this and did it work? How many years should I expect to see a benefit from my DBS? Is there any benefit to using the new drug, Vyalev?