Comments on: A.L.S. clinic at Virginia Mason, visit the second http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second Private Life Wed, 01 Feb 2012 22:20:46 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Laura http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-2095 Laura Thu, 19 Nov 2009 20:40:17 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-2095 LMWK- My sister has recently been diagnosed with ALS. She is only 42 years old, 3 young children. She lives in Alaska and has been referred to the clinic. It’s such a horrible disease and scares me so much for her and her family. The rest of her family (my other sister and I and our parents) live in Indiana and cannot be with her to help her along the way. I do hope eventually she’ll move back home so that we can help care for her and her children but I seriously doubt she’ll go for it. It was comforting reading your blog, knowing she will be able to receive the treatment and follow up she needs at Virginia Mason. She has been seeing a number of Drs on a weekly basis for more than a year now. She’ll be relieved to see all the specialists in one day. LMWK- My sister has recently been diagnosed with ALS. She is only 42 years old, 3 young children. She lives in Alaska and has been referred to the clinic. It’s such a horrible disease and scares me so much for her and her family. The rest of her family (my other sister and I and our parents) live in Indiana and cannot be with her to help her along the way. I do hope eventually she’ll move back home so that we can help care for her and her children but I seriously doubt she’ll go for it. It was comforting reading your blog, knowing she will be able to receive the treatment and follow up she needs at Virginia Mason. She has been seeing a number of Drs on a weekly basis for more than a year now. She’ll be relieved to see all the specialists in one day.

]]> By: sirensanssmile http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-871 sirensanssmile Mon, 15 Oct 2007 10:39:13 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-871 I feel for your mother and the things she has to go through. It must be comforting for her to know that her son will do all this for her and help her. Even if she rejects much of the help.... I am sure it brings her comfort at least emotionally. I wish there were words that could be said to make something better but there are only words of encouragement. I feel for your mother and the things she has to go through. It must be comforting for her to know that her son will do all this for her and help her. Even if she rejects much of the help…. I am sure it brings her comfort at least emotionally.
I wish there were words that could be said to make something better but there are only words of encouragement.

]]> By: gargoylettelc http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-870 gargoylettelc Fri, 12 Oct 2007 21:45:05 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-870 disclaimer of not knowing the insurance situation or your mother's age, but I have several patients who are younger than 65 who often end up with medicare if they have diseases such as MS, Parkinsons, or some other progressive neuromuscular disease, having to due with early disability. Many insurance companies also follow Medicare guidelines as far as what DME is and isn't covered, what %, etc. Often conversion of such benefits can take months, but that's where the MSW could best help you as to what can benefit your mother the most with her present insurance, finances, etc. disclaimer of not knowing the insurance situation or your mother’s age, but I have several patients who are younger than 65 who often end up with medicare if they have diseases such as MS, Parkinsons, or some other progressive neuromuscular disease, having to due with early disability. Many insurance companies also follow Medicare guidelines as far as what DME is and isn’t covered, what %, etc. Often conversion of such benefits can take months, but that’s where the MSW could best help you as to what can benefit your mother the most with her present insurance, finances, etc.

]]> By: gkr http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-869 gkr Fri, 12 Oct 2007 18:29:34 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-869 Medicare won't pay for anything because she doesn't qualify for Medicare. Medicare won’t pay for anything because she doesn’t qualify for Medicare.

]]> By: gargoylettelc http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-868 gargoylettelc Fri, 12 Oct 2007 17:25:44 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-868 Well, that's true to a certain extent, but being trapped in a room, not being able to get on/off a toilet, shower, etc is a whole different category. I won't get on my 'Fall and Fracture' soapbox either. Her resistance is obviously a roadblock, and that makes it more difficult for you to help. That's extra frustrating, but I'm no stranger to resistance to DME. Things you could do is measure doorway widths, particularly the bathroom would be good to note. Finding a store that carries offset hinges could be useful. Does she have a bathtub or shower? Is the bathtub porcelain or fiberglass? Access to the home? Things like buidling a ramp if needed don't usually happen quickly, and I have a handout for that, as well as for a platform under a recliner/chair, if she doesn't have a seat lift/electric lift recliner--which Medicare could pay for in part, depending on her insurance. If you desire, you could take pictures of her bathroom, entrance, places she hangs out in the home, and perhaps I could give you some assist of what could be helpful, so when she does need it, it's already figured out. That's usually the tough part, when something is suddenly no longer doable. Hang in there! Well, that’s true to a certain extent, but being trapped in a room, not being able to get on/off a toilet, shower, etc is a whole different category. I won’t get on my ‘Fall and Fracture’ soapbox either. Her resistance is obviously a roadblock, and that makes it more difficult for you to help. That’s extra frustrating, but I’m no stranger to resistance to DME. Things you could do is measure doorway widths, particularly the bathroom would be good to note. Finding a store that carries offset hinges could be useful. Does she have a bathtub or shower? Is the bathtub porcelain or fiberglass? Access to the home? Things like buidling a ramp if needed don’t usually happen quickly, and I have a handout for that, as well as for a platform under a recliner/chair, if she doesn’t have a seat lift/electric lift recliner–which Medicare could pay for in part, depending on her insurance. If you desire, you could take pictures of her bathroom, entrance, places she hangs out in the home, and perhaps I could give you some assist of what could be helpful, so when she does need it, it’s already figured out. That’s usually the tough part, when something is suddenly no longer doable. Hang in there!

]]> By: gkr http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-867 gkr Fri, 12 Oct 2007 02:10:48 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-867 My mom hasn't wanted one to come in. So far, she'd just prefer to ask questions of the PTs in their offices. She's also of the opinion that, for the most part, once she starts losing function, there will be other people around to do the things she can't. She'd rather not spend the money making modifications that will be only temporary. It took us nearly 6 months to convince her to get an answering machine, for instance. She couldn't call someone back, so why bother recording messages? If I were living there, and managing things, I could get her to agree. But I'm not, and she doesn't want me to, and it gives her more time to be stubborn. My mom hasn’t wanted one to come in. So far, she’d just prefer to ask questions of the PTs in their offices.

She’s also of the opinion that, for the most part, once she starts losing function, there will be other people around to do the things she can’t. She’d rather not spend the money making modifications that will be only temporary. It took us nearly 6 months to convince her to get an answering machine, for instance. She couldn’t call someone back, so why bother recording messages?

If I were living there, and managing things, I could get her to agree. But I’m not, and she doesn’t want me to, and it gives her more time to be stubborn.

]]> By: gargoylettelc http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-866 gargoylettelc Fri, 12 Oct 2007 01:59:32 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-866 I think seeing a counselor would be a great idea. (one of the few males who may actually do it ;-D ) You need to put the oxygen mask on yourself, then assist the others around you. So, has any PT or OT done a home safety eval at your mother's house? It's nice to get things in place so the are there before you need it, vs 'oh crap, we need this yesterday'. I know you've read books, but some equipment works better for some situations than others, and ideas for the environment may come up that haven't been covered. I think seeing a counselor would be a great idea. (one of the few males who may actually do it ;-D ) You need to put the oxygen mask on yourself, then assist the others around you. So, has any PT or OT done a home safety eval at your mother’s house? It’s nice to get things in place so the are there before you need it, vs ‘oh crap, we need this yesterday’. I know you’ve read books, but some equipment works better for some situations than others, and ideas for the environment may come up that haven’t been covered.

]]> By: gkr http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-865 gkr Thu, 11 Oct 2007 22:32:58 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-865 That you can. Though, I should point out that you already have a Ward Cleaver. It's not so much the one-time thing. It's the comfort of knowing there is always someone supportive at home. That you can. Though, I should point out that you already have a Ward Cleaver.

It’s not so much the one-time thing. It’s the comfort of knowing there is always someone supportive at home.

]]> By: efebruary http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-864 efebruary Thu, 11 Oct 2007 22:26:24 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-864 i wish i saw this last night... if you want, give me a call - I can totally do June Cleaver. let's arrange something, eh? i wish i saw this last night…
if you want, give me a call – I can totally do June Cleaver.

let’s arrange something, eh?

]]> By: psychik http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-863 psychik Thu, 11 Oct 2007 22:04:27 +0000 http://www.kingrat.us/2007/10/als-clinic-at-virginia-mason-visit-the-second#comment-863 Wow, if I have know you were feeling this bad, I would have come over. You tend to be a bit stoic with your pain, so your friends don't know when to help you until you have a moment like this. Definitely look into a counselor, and try to reach out more. I know these two things are extremely difficult. You'll be surprised how many people will be there to help. Wow, if I have know you were feeling this bad, I would have come over. You tend to be a bit stoic with your pain, so your friends don’t know when to help you until you have a moment like this.
Definitely look into a counselor, and try to reach out more. I know these two things are extremely difficult. You’ll be surprised how many people will be there to help.

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