Hi and welcome to Parkinson’s and me. This is Daniel.
Hoping and coping. This is a podcast that explores an individual’s path diagnosed with young onset Parkinson’s and how it affects him and those around him. Now in this episode will cover different coping mechanisms that we use in dealing with the condition of Parkinson’s.
Also, we’ll cover news regarding the discovery that may lead to reversing the effects of Parkinson’s disease. But before I go any further, let me welcome my brother Brian to the show. Brian welcome.
Thanks for having me on again Daniel, and just for our new listeners. I am the older brother.
And I do not have Parkinson’s, but I definitely have impacted by my brother’s diagnosis. And so I’m just here to help guide the information. Thanks for having me on.
Well, thank you for being here.
You know one of the advantages of being your brother is not only get to do podcasts with you, but I am looking forward to having my nephew.
Your son over at my place this week. So for a couple overnighters. Really looking forward to that.
I can tell you what Brian that my son is super stoked to come and see you. It has been some time an he is ready so we’re here. Can’t wait to see Uncle Brian.
I appreciate that and I definitely don’t mind spending time with him. He’s not one of those.
Kids, you were like you know what?
It’s OK if he stays with you, Daniel.
And one of the things I can’t get over is that he is getting ready to start middle school. Unbelievable man. I mean how are you doing with that? We talked about in previous episodes the new normal he is leaving elementary and going to middle school for the first time and definitely in a different environment than when you and I went to middle school.
How’s he feeling about going to middle school and how’s dad feeling about that?
Yeah, you just can’t believe that he’s actually made it to middle school for him. It’s not much of a change because it looks like we’re going to start the year with distance learning so he’s not going to have to have the first days of awkwardness that comes with.
Entering into middle school, I’m so proud of the boy that he is, but the man that is turning into so there is an incredible source of pride while at the same time sadness ’cause my boys growing up he’s their only one. What it means to me as a dad is I’m.
Passing the baton from one stage of life, his elementary primary school to now his middle school. He’s getting older. He’s becoming more responsible just by listening to him talking the beginning of his voice, changing the formation of his words, and just listening to him talking to his friends and his family.
It is clear that he is no longer a little boy and that makes daddy sad and proud.
I don’t know if I’ve shared this with the listeners, but I am also a teacher and I’ll be teaching 6th grade this year so he’ll be a 6th grader. I’ll be teaching 6th grade and is one who has a lot of experience with this age group. I’m really excited about.
His middle school journey and what lies ahead for him.
I understand you want to make a disclaimer to our audience out there.
Yeah, I just wanted listeners to know that by the time we record an episode to win, the episode is released. Several weeks have gone by if not months. So what brought this up?
Was I was listening to a previous episode that had just come out and Brian you were asking me how I was doing and I was talking about having family over and just kind of a party. It was great to hear kids voices and that I was doing great. The only thing about that is by the time the episode released in the US.
We’re back to pretty much locked down status, so the environment when the episode was released does not match the environment that you initially asked me how I was doing so. I just wanted that to match up.
Good to clarify that as well. Anything else we need to take care of.
Yeah, some tips that I was able to pick up from physical therapist.
I’m sure many of these tips are already well known, so I just want to tag just a few to go over that have helped me. Some simple hacks and example my ability to write is deteriorating and still not bad, but it takes me a while. The therapist said get a heavier pin. Interestingly enough, the heavier the pen.
The better my writing is, another thing is my typing has degraded as well.
So when you say your typing has deteriorated, what does that mean?
Essentially, I was able to type very well before the consequences of Parkinson’s very fluid, very efficient.
Now when I try to it’s hunt and Peck, sometimes other times it’s typing with my left hand only, which definitely slows me down. Or I just may not be able to type at all. I don’t have the coordination to tell my fingers to type like there supposed to.
So when you said you’re using an enhanced keyboard, what is that? How is that helping you?
It’s a keyboard that allows you to type, hopefully more like You used to with just some modifications. The keys actually give a greater response back, letting my brain know that it’s OK to move on to the next key also.
The enhanced keyboard can be larger type, so the actual letters and numbers on the keys are larger. They’re usually spread apart farther, allowing for better travel. I’ve already sunk plenty of money into some keyboards that I thought would do the job, but they did not.
Hopefully this one does the trick. I’m kind of excited about it, so that’s on its way. It’s expensive.
Excellent, what else is going on with you?
You know those hand grips that you use to strengthen your hand your hand shake, you push it. Well, I’ve been using that because I want to make sure that.
The strength in my hands have the best chance of remaining because my hands have grown weaker and it’s much more difficult to do things and I’m finding that the lack of use is causing my muscle coordination to the theme to decline. So a suggestion.
That the therapists made was instead of using the hand grip because all that does is just work a few muscles is to actually use therapy putty. I had carpal tunnel surgery. This was back in the time to where we were trying to find the accurate diagnosis as to what was going on.
I had two surgeries with carpal tunnel on my left in my right, so I had therapy putty on hand and what this does is it provides resistance while also being able to manipulate in my hand. So what’s cool about it? Is it better addresses the dexterity in my hands?
Versus my strength only, so both are good. Just that small change really has allowed me to work on the dexterity. The movement of my hand.
Alright, let’s get another update. In a previous episode you had mentioned, you were going to meet with a support group with other people who were going through young onset Parkinson’s disease. Any news on that? Actually, we had our first meeting. At least my first meeting for the group last.
Week this was a real eye opener because this was the first time I had come face to face with others that had Parkinson’s since I was diagnosed. So this was virtual we cannot meet in person. We did the zoom thing, something I’m very thankful for.
Was the decision to ensure that that I met with those around my same age that were experiencing the difficulties that I was experiencing at this season or time in my life?
So would you take?
Away from this particular meeting, yeah, this was really interesting for me.
Because I finally got a chance to ask questions and hear responses on ways that they’re coping with PD and I notice there’s a substantial difference in the way some of them were handling the progression. First of those is the.
Difference in outlook of the future? What was their outlook? It was much more focused on the here and now versus my focus on not only the here and now, but what’s coming up ahead.
What were some of the other takeaways you received after talking with other people who had the same diagnosis as yourself?
Convincing myself that there is no going back that I’ve got to live with the progressive condition. I tend to focus on the worst case scenario. What this means is, if I’m going to be wrong regarding the worst-case scenario, then that is going to be a wonderful surprise. However, I want to be ready for it.
That way it doesn’t catch me off guard and it’s my way of managing expectations. It may not be the most healthy way, but it is my way and their perspective. I notice that they were hanging onto a cure much more than I was. I’ve removed that hope from my mind.
What sparked that hope for a?
Cure that so many am seem to be holding onto.
Think it’s simply that that it’s hope that it’s a reason to keep going and then say, great reason that there is hope on the horizon that the Calvary is coming, that this condition is not.
Permanent that really got me thinking about. Well, Daniel, what if there was a cure? I immediately went into, well, I wanted to. I want to make sure that the time that I’m living is not focused solely on a cured where I’m just focused on that, that I’ve failed to live my life.
To the fullest possible, I admit this may be very skewed, I just didn’t want to have the huge regret that if there were a cure that I would have spent the time just wishing my life away that my time with my family was not experienced till its fullest. It’s difficult for me to measure the balance here.
Between hope realism, dealing with it and moving forward.
Such an interesting perspective because.
We played a clip for Shawshank redemption about get busy living or get busy dying. Another clip that comes to mind from that classic film was.
Andy and red talking about hope can be a dangerous thing. It can drive a man insane.
I want a song my friend.
Hope is a dangerous thing.
Open Grabber man insane.
00:11:59 Speaker 2
Just got more used on the inside. I better get used to that idea.
And then at the end of the movie him talking about hope can be the best of things I know for Michael J Fox. An interview I saw him. He is not expecting a cure in his lifetime, but he’s more focused on treatments that can allow people with Parkinson’s disease to function more normally in society an. So it’s interesting to hear this hope for a cure and.
I don’t know how you balance that out between.
Putting a lot of hope into that and just accepting reality and moving on when doing the best you can with life seems like it would be difficult to balance that.
Yeah, because if there is a cure and that helps you get up in the morning, I think Michael J Fox is. Perspective is cure may not come in my lifetime, but I want to make sure that.
We have advancements to where those that come behind me have a way to not go through this this condition but accepting there is no going back for him.
Are you hopeful for a cure?
I’m not expecting that that’s why it was of such interest that someone brought up an article.
That actually has some hope for possible cure.
Sounds interesting, and with that, let’s bring aboard our very first guest on the program, and a very special guest who can tell us more about this possibility.
I am honored here to be with my other side, my wife, my Princess. Hey Hon.
Hello my baby.
I’m glad to finally get you on the podcast that I tried describing this discovery, and I think I did a pretty good job, but what were your words?
I think I said you did an adequate job.
Wait, being that a bunch of it was unfamiliar to you.
What do you do?
For as an occupation, yes. Oh I I study I’m a researcher for Optomology and primarily the retina an. The retina is actually part of the brain.
So a lot of times what works in the brain will work for retinal issues too, and vice versa will.
You please explain what this discovery was made and how it can affect us.
Sure, so this was a paper that came out in the Journal called nature, which is a very prestigious Journal.
In order to get a paper published there, you have to have a lot of very good science and it’s got to be something that’s exciting and definitely relevant to potentially human beings. This was published on June 24th, 2020 and the paper is called reversing a model of Parkinson’s disease with Institute converted.
Nigral neurons it’s mostly from a group that’s out of the University of California in San Diego. So let us start with some basics here.
Is some terminology.
Some basic terminology, yes, let’s go over what Parkinson’s is, so it’s a loss of neurons in a particular part of the brain.
That produce dopamine and as a result there’s all kinds of motor deficits an another. Other issues. Yes, OK.
I know this.
Well, thank you so to be more specific. Neurons or the cells that are in your nervous system throughout your entire body that transmit information to other nerves, muscles or gland cells.
OK, got it.
The ones that people with Parkinson’s are missing or are in the brain. Then we have astrocytes, so that is a non-neuron cell that also resides in the brain and the spinal cord and it helps to support healthy neurons among some other things. Both of these cell types neurons in the astrocytes come from the same progenitor cells.
What that is is initially our body is have stem cells an those differentiate into more specific cells to help us form our entire being progenitor cells in particular, are the result of stem cells, but they are able to further differentiate into specific cell types in a particular tissue.
Or since both of these are in the brain, they have the same progenitor cells. OK, OK, So what this group is found is that astrocytes in mouse brains can be converted back to neurons since they come from the same kind of origin. You can make an astrocyte be a neuron.
What keeps that from happening normally is that the astrocyte produces a protein called PTB, and this basically is a protein that tells the cell hey stay in astrocytes stay in astrocyte.
So it keeps them from turning into Neurons. Yep.
OK, it just makes them stay what they are, but this group found that if they could block that protein.
The astrocytes were no longer being told. Hey, you need to stay in astrocyte.
And they were turning into neurons.
So the authors were depleting PTB.
Correct, OK? And we won’t go into how they did that. They did it in multiple ways. Key thing to note here is that they started out in cell culture, so they took these cells. That’s called ex vivo. It’s not inside the body. They could make that happen there. So then they started doing it in a couple different models.
Of mice in live mice in their brain, and it happened there too. It’s really exciting after three months in these mice between 35 and 40% of astrocytes that were converted to neurons were producing dopamine. That’s huge and that amount alone was able to restore the motor behavior in these mice.
They were not acting like they had Parkinson’s anymore and we won’t go into how they know that with mice, but you can do all kinds of behavioral tests with them.
Wow, which is fantastic. Now the big question is what does this mean for people for human beings? Yeah, what they have done is in cell culture they have looked at human cortex cells which is another part of the brain and they have been able to get human astrocytes and that portion of the brain to turn into dopamine producing neurons in cell culture.
That’s huge because a lot of times what you can do in mice isn’t going to translate over to humans, unfortunately.
So that is a very big step in suggesting that this will translate.
The obviously there’s going to be a lot of trials going on before somebody is actually trying to do this in a living human brain, right? But it’s certainly encouraging.
Brian and I were discussing.
The idea of how to cope with Parkinson’s, whether to put much hope or emphasis into a cure, how does this measure up against other things that you might have read as a possible cure? And how much hope should we put into this?
I, I think hope is a good thing and I think that this has got a lot of Merit to it. Sometimes, particularly with studies with mice in the brain, people are working on changing the genetics of what’s happening there, and that doesn’t always translate well from mouse to human. This is totally bypassing.
Trying to change a gene. We’re not trying to change the gene that makes the bTB protein, we’re just trying to, you know, make the protein go away after it’s been made, or stop it from. I won’t go into all that, but the RNA portion where it goes to make the protein. If we can stop it in there, you’re still not affecting the actual gene itself.
So that’s, uh.
Good thing I believe for this to translate to humans is that you’re not. You’re not messing with the genetics of it in anyway, which which might not translate from mice to human. I think it’s also exciting that it was published in such a good Journal.
Yeah, your son nature is a big deal.
It’s a big deal, yes, I believe that because hopefully this will get other people thinking an may get some.
I, I suspect that this group will get. I have no problem being funded and the next great news the next rounds so you know, there’s always. It’s always nice when something exciting happens, because that does mean that more funding and interest can be going into that particular area of study. The other thing to know is that obviously Parkinson’s is not just in the United States where we are.
And sometimes it’s easier to get things into clinical trials in different countries in the world, so it may be that this doesn’t make it into a US clinical trial, but in the next 5 or 10 years maybe it does somewhere in the world, so that’s I definitely think that there’s hope.
OK, so you’re talking five-year timeline.
I it is it’s going to depend. I mean like I said there’s a lot of steps between this worked in cell culture with human cells to let’s actually get this going in a living human. So our human brain. So there’s gotta be a lot of steps in there, but if things go well, I don’t think 10 years is is too far in the future.
Thank you so much for joining me. She knows what she’s talking about. It’s so much better.
Than I don’t I.
Know so much better than I did and it was wonderful.
Well, it’s been nice to join you.
Thank you so much.
Remember, red hope is a good thing.
00:21:21 Speaker 3
Maybe the best of things and no good thing ever dies.
So when this was brought up in the support group, I was blown away. I was faced with. Well, maybe there actually is hope out there.
So we’re not talking about it, just a strong treatment. You’re saying there’s a good. There’s hope for an actual cure.
So I don’t know. However, I think I’m going to proceed with my perspective or my way of coping.
And for those who would like more information and the specifics and some of the details, we invite you to check out a link that we’re going to put in the show’s description, and you can find that in the episode itself, within your.
And that’s going to wrap up our episode hoping and coping. Daniel definitely appreciate you sharing how you’re coping with this disease and and also offering some hope that science may provide in the near future.
Alright, that wraps up episode 8, Brian. Thank you so much for joining me.
And being willing to be a part of this process and this podcast? Well, thanks for inviting me on the journey and I want to extend a special invitation to our listeners that if you’re getting value from the show, feel free to share it with others because we will want to reach as many people as possible and Daniel is going to.
Leave his contact information here in just a minute. We would love to hear from you, but thank you for listening. We really do value your time and efforts in participating with us on this journey.
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