I'm retiring the channel

[00:00:00]Hello everyone and welcome back to another episode of you and me a multiple sclerosis. My name is Pam and I've been living with multiple sclerosis for 40 and a half years and I don't believe in stringing you along waiting for the punchline as it were the main point of the video. So I'm going to go ahead and say that this may be my last video that I post on this channel and that is not because I've grown tired of doing these videos or posting or hearing from you and corresponding with you. I have enjoyed that very much, but what I'm finding is that it does take an awful lot of time.

[00:00:46]There are other things that I really ought to be doing in my day that I am just not getting to because the videos take me quite a while between all the reading and the researching and the video making and the editing and all that kind of stuff. I don't really want to sound like I'm complaining though.

[00:01:06]It's just that we all know that with MS you only have limited energy and I can only do about two or three things in a day and if I'm doing the video stuff then that's got that takes out an awful lot of the opportunity that I have for other things.

[00:01:23]And as I've been toying around with this the latest problem that I've had involves my computer and you can already tell that the computer camera is not what it usually is. I'm using a different computer because the one that I had been using first the camera died and I had to get a different one and other things started happening like it would turn itself off in the middle of using it for no apparent reason.

[00:01:55]Then I went away on vacation for a few weeks, and when I came back and tried to boot it up, it just kind of laughed at me. It wouldn't do it. So, done with that one. I'm using my backup laptop now, which does not have a very good camera. I hope the audio on this is okay. I I'm at the point now where I either have to invest in better equipment or just say, "You know what?

[00:02:22]Maybe this is the time to take that break that I've been thinking about taking anyway."

[00:02:28]I will say that I have very much enjoyed the time that I've spent getting to know you all and hearing from you, and some of you have shared your situations with me, which I really appreciate knowing more about so that I can be thinking of you and praying for you. And some of you have shared the strategies that you are using to live with MS better, and I really do appreciate those a lot.

[00:02:54]I've adopted a couple of your strategies for myself, in fact. And I've also appreciated the suggestions that you've made from time to time about videos that you would like to see.

[00:03:07]All of that adds up to support, and I feel very supported on this channel, and I think that that support says a lot for the MS community, and I am really going to miss you guys.

[00:03:20]But, let me tell you what I've been up for to for the past year or so. I need You know that I had that surgery in June of last year, and that July 1st, the day I came home, my MS just decided it had had enough, and I collapsed, could not walk, and it took months and months to get back to where I could actually walk.

[00:03:41]I was First, I was in a wheelchair, then I was in a walker, then I finally got back to my cane again, but I am not really back to where I was before the whole surgery business happened. I believe that I can get back to that.

[00:03:58]It's just that I have not really been focused on it. I've signed up for Gretchen Hawley's website, The Missing Link, the paid program, because I have thought that I could gain quite a lot of benefit from that, watching her videos, following along as we do the exercises, and she has um discussion sessions and different things that I could be a part of. What I'm finding, though, is that I just really haven't had the time or energy to focus on that because I have been doing these other things.

[00:04:34]And so, I would like to see what would happen if I could just focus on that and make it more of a priority for me.

[00:04:42]We all know what that's like. When we have MS, we have limited energy, and we just have to decide, "What am I going to do with my day?" I can only do one, two, maybe at the most three things with any certainty that I might actually get them done.

[00:04:59]And so, that's what I'm thinking I need to do is focus on exercise for now.

[00:05:06]I will tell you, though, that this last 6 weeks, I wasn't even here. I had to hurry and make a bunch of videos ahead of time because I knew I wasn't going to get to make any while I was away. But my husband and I drove all the way across across the country from Washington to the East Coast. I should say he drove. I was the passenger. He did all the driving.

[00:05:29]But we started in Vermont with my mom and my brother, and then we went to New Hampshire for vacation for a few days with my brother, and then we went down to Rhode Island to see my husband's sister, and then we went back to Connecticut to spend time with my sister and her family and then we drove back. And then all in all that took about 6 weeks.

[00:05:53]I was very pleased to see that my MS did not give me more than more trouble than I feared it might, in fact not very much. I was so sure that I was going to not be able to get up the stairs to my sister's guest room.

[00:06:10]But I managed that. Again, Al was helping me a lot making sure that I didn't fall. He was right there to make sure that if I fell, I fell on him, which I think is kind of crazy.

[00:06:22]And maybe that kept me from falling cuz I just didn't want him to end up going down the stairs ahead of me. That would not have been good. He played on my sense of responsibility and my love and care for him to make sure that I was extra careful.

[00:06:38]But anyway, it was a good vacation.

[00:06:41]But what it tells me is that there is hope for me to get back to what I was before.

[00:06:46]And I want to try and focus on that. So that's what I'm going to be up to. And again, I will miss you and I'm very sorry to have to make this my last video.

[00:06:57]But um I wish there were a way that we could keep in touch. Do leave me a comment if you have any ideas or suggestions about how we can do that without it being such a big part of my life to make these videos and get them posted.

[00:07:15]Of course, you know I'm not going to leave you on a discouraging note. I have a couple of short news items to show you. Neither one of them is up-to-the-minute, but I think they capture the optimism that I want to leave you with because this channel was all about encouragement. And we need to be realistic, yes. And we need to even be cautious, yes. But we do need to be optimistic, too, and to celebrate the wins when they come. And this In the spirit of that, this first clip is from MS Guide, and Dominic is going to tell us about the very recent study, and how encouraging those are for people living with progressive forms of MS. >> If you have progressive MS, or you're worried about what progression might mean for you, and who isn't, I want you to hear this. Because today is actually a good day.

[00:08:13]There's long been an assumption in MS medicine that once your disability reaches a certain point, treatment stops being worth offering.

[00:08:21]You're too old. People hear that.

[00:08:24]That the drugs won't work, that you've passed the stage where anything can help. Some researchers even have a name for people at that stage.

[00:08:33]The unsalvageables, if you can believe it or not.

[00:08:37]That phrase is real.

[00:08:39]It shaped who got into clinical trials, and who got treated for years.

[00:08:45]A few days ago, a major study published in The Lancet has directly challenged that, and it's called ORATORIO HAND.

[00:08:54]It tested ocrelizumab, which is Ocrevus, which is already licensed for primary progressive MS. But this time in people with more advanced disease, older patients, wheelchair users, people who would previously have been excluded from trials entirely.

[00:09:12]The results are genuinely significant.

[00:09:16]Overall, the drug reduced the risk of disability progression by 30%.

[00:09:23]In people with active disease on MRI, that figure was 55%.

[00:09:29]But the finding I want you to sit with is this. It protected hand function. A 41% reduction in risk of losing hand function. In wheelchair users, it still worked. Your hands are your independence.

[00:09:44]Cooking, typing, getting dressed, holding somebody. The trial was designed because people with MS told researchers loudly and repeatedly that hands matter more to them than walking.

[00:10:00]Researchers listened and this trial happened because of that.

[00:10:06]So, the unsalvageables are salvageable.

[00:10:09]Research is moving. The picture is not as fixed as it has been felt.

[00:10:15]And today, that matters.

[00:10:19]>> And then, of course, what we're really wanting is a cure for multiple sclerosis. And so, I'm going to give the last word here to Dr. Stephen Hauser, who is with the University of California at San Francisco. And over his long career in MS, he's been instrumental in developing a lot of new therapies and making some interesting discoveries, too. He is optimistic that a cure will be found. As he says here, "After decades of devoting himself to the study of MS, Hauser says he's more optimistic than ever about the prospects for a cure. I think we're well on the way," he says. "We first need to have a complete disease suppression. And we're not quite there yet. However," Hauser noted, "researchers have just completed enrollment of the first study testing if MS can be cured by aggressive treatment at the very dawn of disease.

[00:11:20]I think everyone in the field is optimistic that this could happen," he says.

[00:11:25]He's also confident about science making great strides in combating other devastating neurological diseases.

[00:11:34]New technologies plus better disease models are opening the door for a better understanding and realistic prospects for therapies, preventions, repairs, and cures for people with brain diseases, he says.

[00:11:49]And I think that's a good note to leave it on.

[00:11:52]Because while we are not there yet, many researchers in the field who have good reason to be optimistic are optimistic. And I hope that you will remain optimistic, too, because we know that this is a problem many people are trying to solve. And with all the great minds at work on this problem, it's bound to find a solution. We need to be realistic, of course. Time frames are never going to be exactly what we want. The other thing we have to remember is that disease that we have accumulated over the years is not going to just go away. The damage is still going to be there. But if we can stop it from progressing, for many of us, that's as close to a cure as we could realistically hope for.

[00:12:42]And believe me, if I knew I was never going to get worse, I'd take that. I'd be pretty pleased with that. For many who have just started their MS course, though, the outlook is even brighter.

[00:12:55]We might get to a point now in a few generations where MS is a disease of the past.

[00:13:02]And I know you will join me in saying, "Hear, hear." for that.

[00:13:10]And since we won't be seeing each other again for who knows how long, I do want to just leave you with the message I leave you with every time. You do need to take really good care of yourself. There is so much coming down the pike, as you've seen with these videos that I've been making and posting.

[00:13:29]There's new research all the time. I think that within a few years we're going to see some pretty important breakthroughs happening. We're already seeing an awful lot of advance for those who are newly diagnosed and those who are in early relapsing remitting MS. And now even those of us with progressive MS and are seeing some hopeful signs that they may be getting a handle on things.

[00:13:54]And I certainly want us all to be healthy enough to take advantage of that. So, please do keep taking really good care of yourself. Have a wonderful life.

[00:14:05]I'll miss you.

[00:14:07]Bye-bye now.