Відео

I’m a vented quadriplegic due to ALS/MND. I try to spend around an hour a day singing to Staind; an American rock band. It does wonders for my lung health according to my doctor. It’s also incredibly uplifting and a great physical workout for me (while I’m in my sling).

Thabks for the information. Sadly military looks like another branch of welfare in 2024.

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J: Yes, 30 years without a need and I almost cancelled it. Then I received the diagnosis and I thought, man, we dodged a bullet. D: A huge bullet! We also received really excellent support and I know people aren’t going to believe this, but from the Social Security Administration. They worked to help us figure out the disability options and were really, really helpful. I know it’s sort of normal to dis the government, but this is one that really, really worked out for us. Then all along we had the ALS Clinic close by, but we’ve got to give a shout out to the ALS Association. Just knowing that they were there was somebody we could call that could say have you tried this? Have you thought about this? We’ve got these resources available to you. We’ve been extremely grateful for that. We try to support that with the fund raisers and the activities the Association puts together. We enjoy the fundraisers. The annual Walk, we are very sorry it’s not in the format that its usually in, but we know that the format, for this year, will have to work in a pandemic. In the past, when it was a big Walk, and we could call friends together, we would have friends from out of town come, family from all over the place come. J: Church. D: Church friends, just have a wonderful time getting together with those folks and if we raised a little money that was good too. We went to the big Gala Dinner, that was fun, it was a lot of fun. To get dressed up and go downtown, have a good time. We inspired, one of our daughter’s friends was inspired to put together her own little fundraiser. At a local bar in the area that has volleyball courts. She put together a volleyball event, it was so much fun. J: Pierre Delamar did a fundraiser by walking the Pacific Coast Trail. He hiked 1,000 miles. D: He did, yep, so that’s meant a lot to us. To be able to both call the ALS Association and to support the ALS Association, it’s an important thing to us. J: I think one thing we did that defined all of our actions up to this time, is we committed to try to squeeze the most value of our life out while we were experiencing this horror. We, I think have committed our time and energy and resources and called upon others in the selfish attempt to make our life livable and normal as it can be. D: Normal, the new normal. There’s no doubt about it that over 6 years of living with something, we’ve been lucky that John’s progression has been slow. That has given us an opportunity to anticipate some things. Other things just kind of dawn on us, oh my gosh, we should be doing something about this. There are lessons we’ve learned, and I have got a list of them. One of them is to try to be ready before it’s necessary. We started really working on getting this motorized chair well before the insurance was going to approve it. We started hounding to get that done before it was there, so that it was with us when it became absolutely necessary for John to be in a motorized chair. J: We have to thank the Closet for bringing one sooner than the approval of the insurance. I needed it way before we got it. D: Yes, that’s true. There’s lots of other ways we tried to live by that, being ready, having things available before we needed them. The other one is, it’s kind of along the line of equipment, is to know that you’re going to make mistakes. You’re going to get something that you go, oh this isn’t right. You might spend a lot of money on it, but forgive yourself, let it go. We’ve had four shower chairs, only one of those was really a mistake, the other three we have used because there’s been a progression of need as John needed more support for that rolling in and out of the shower. We needed a different sort of a chair, one of them was really, actually, of course, the most expensive one was a dud, but we had to move on. J: Fortunately, we gave it to the Closet. D: We did give it to the Closet. J: So, it’s their problem. D: Yep, one of the things that also goes along with that is sometimes the simple things can be the best. We had been trying to find some sort of tray for John’s motorized chair, something that would attach to it and be fancy and spiffy and all that. We finally just gave up and got a lid off an old crate and said, you know what? That reaches across your lap and it’s flat and we can put your mouse on that and it’s just fine and we already own it. So trying things that are already available helps you learn a little bit more about, either it works out just fine or you learn a little more about what you’re actually looking for, what you really need, by trying things you already have. I think John already said that we should accept help, that’s a big one. J: Yes, it’s tough. D: It’s tough to take when your grownups, you think, I can take care of myself. There’re times when you really, really need to accept help. Especially right after the diagnosis because it was like, I don’t think I can cook, and somebody would bring supper over without us even saying anything. Supper would just show up. It’s…so accept those things and be grateful for them. The other thing is that for a long-time people would ask me if we had any help and I would say, no we’re fine, we’re taking care of stuff. Then I’d realize, we did hire people to help us. Having somebody come by to clean the house was an enormous help. If you can at all afford those things, that don’t seem to be specifically related to the condition, you may not realize how much that’s really, really helping you because it frees you up to address the things that are related to taking care of John, taking care of your loved one personally, that was a big one. The other one, another lesson that we learned is to go outside. It’s just kind of, go outside. For a while we made sure we went outside every day. This was even in the middle of winter in Wisconsin. We would go outside every day. That’s kept us in touch with neighbors, it’s helped us to meet new people, new friends. It’s just been important for our mental health, I would say, don’t you think? J: I think it keeps me in touch with the rhythms of the year. D: Yes, but when you’re with those people, talking with neighbors, be honest with them. We’ve had really well-meaning people invite us to do things and we finally learned that we should just say, we should just explain, we really can’t do that. We really can’t go out to eat anymore, it’s too difficult. We would love to see you in your backyard and, we’ll say, for a glass of soda. Just be honest with people and let them know, you don’t have to burden them, just give them the picture of what’s really going on with you so they can react, so they can respond to you in their best way, because they’ll do it, they will do it. We sometimes talk about what it was like for people who…Lou Gehrig, you know, who had ALS at a time when there was no internet, really no telephone system that was all that wonderful. The fact that we’ve got computers and big, fancy TV’s and telephones and text messages and Zoom get togethers, it’s just amazing in keeping us connected with the world and up to date on what our friends and family have going on, what’s going on with ALS, what’s going on, just in the world. So, we’re grateful for that and that’s a lesson that we’ve learned, that we should be grateful for and take advantage of as much as possible. Sort of an aside, we have learned that, it’s kind of back to the equipment thing, we’ve learned that acquiring equipment , we probably already alluded to this some, is not as easy as running to the store and buying a new bicycle. Getting a motorized wheelchair, getting some of the other equipment that we’ve needed, especially if insurance is involved is really complicated. It can take a long time and it can be frustrating so I guess the lesson here is to try to develop a relationship with those people who are providing you equipment so that you are getting…so you feel like you’re at least getting a good response, so you get some sort of good reaction. J: The most surprising thing to me is that the doctor, in France, who developed the neuroscience under 60 years ago discovered ALS, and we don’t have anything of value to combat this awful condition. What the hell? D: There you go