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KimT

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Where did you buy your magnesium. I take 1,200 mg a day of taurate, glycinate and citrate with no effect on the twitches (which are now bodywide)
 

SJFBC

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Hi KimT,

I get them from our local Naked Naturals health store.

Here’s the info from the ones that Mario’s Massage Therapist recommend we try:

MAGNESIUM CHELAZOME (BISGLYCINATE) FROM TROPHIC – 180 Vcaps
Each Vcap contains:
Magnesium (Bisglycinate 560mg
Providing Elemental Magnesium 100mg

As I mentioned, my husband takes 5 per day (2 right before bed) and they have most definitely relieved my husband’s twitching and his cramping.

Hope that helps.
Sharon
 

affected

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I don't know which bed Paulette (zoohouse) uses but I know I was amazed when I first heard of what it was able to do.

Thanks again for this great thread Sharon, lots of people are looking into lots of things here that just may increase quality of life, and that's what it is all about!

Really interesting detail you gave about the Tram, it's easy to find by google and see the specs and video :)
 

SJFBC

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Many thanks, affected. I can’t tell you how thrilled I am to know that people are finding the information in this thread useful.

Yes, it is the same bed that Paulette (zoohouse) has for her husband. The guy from Pro Bed gave us some testimonials from other PALS that already have the Freedom bed so that we could relate to how it actually benefitted people with ALS and Paulette’s testimonial was among them. We too were amazed at what the bed can do and what a difference it has made to their lives. It was after reading Paulette’s testimonial that I visited the ALS Forum and saw her thread about positioning her husband’s arms whens the bed is turning. That information was very useful to know and gave me some ideas to try and prepare something (i.e., the arm bolsters that I mentioned) for when Mario was demo’ing the bed.

Thank goodness we have this forum to share such amazing information.
 

lgelb

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Since the Tram is pricier (4k with no accessories) than other things recommended here, apart from the bed, I will remind newbies that many PALS lose neck/back/core strength early, not to mention ability to have arms/legs only partially supported; 75-80% of ALS cases are limb-onset rather than bulbar or respiratory.

"Dr. Craig" in the video was donated his TRAM, which I find interesting since ALS is not identified as an indication for this machine in any of its technical literature that I could find (nor should it be).

From an economic perspective, for those less familiar, there are many fine beds available for less if the Pro Bed is not an option. We are always happy to advise about options whether a bed is being reimbursed or purchased for cash, the same for lifts (which are often available as free loaners) and other equipment. There is an equipment sticky with some additional points.

As with other product categories, but perhaps especially for equipment with high stakes as well as high prices, it is usually best to give less weight to individual "testimonials" and more to product manuals, specs and diagrams, which are generally available on line.

Best,
Laurie
 
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affected

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Laurie, I respectfully disagree - I think, and it's JMHO that personal testimonies are incredibly invaluable especially with ALS as too often we are not given a lot of great ideas or choices from health professionals or companies that don't know a lot about this disease.

I think our members, again JMHO, are able to listen to personal views on products and then go weigh up the possible application to themselves, so I would encourage all CALS and PALS to post all pros and cons they have found with anything they try.

Sharon I love that you found a testimony from Paulette that helped you make the bed decision and then it led you here - double bonus!
 

lgelb

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I didn't say not to read testimonials, of course (though I could make an exception for some dubious "PALS" outside these Forums). I suggested that they be placed in your own context: your home, your progression, your budget, your transportation. I think you are saying the same, but my grain of salt may be bigger. Millions, probably billions of people have wasted money on something hawked via testimonials. It's why they're everywhere. They work.

Even people here, with the best of intentions, may not always understand the range of different progressions possible in syndromes (those illnesses that affect multiple organs/systems). So when an outlier says, this was great, it's easy to believe. Not all P/CALS are at the same level of understanding the disease/the possibilities as yet.

I'm not wealthy, and we didn't have VA, Medicare or any public benefits. The only ALS aid anyone else paid for was the power chair. So I and fellow self-payers are always full of "ideas or choices" -- just ask!
 
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SJFBC

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I also disagree with Laurie's comments and I totally echo what "affected" had to say in her response. It is all about choices!!!

And whether equipment is donated, loaned, rented, purchased etc is irrelevant. If everyone at least KNOWS about the options out there that MAY also help them then they can at least make a more INFORMED DECISION.

Just FYI, for anyone else that's interested, if you cut and paste in your browser (or google):

Multi-tasking tram plays many rolls - Mobility Management

you'll see an independent article by Mobility Management on the Rifton TRAM (Mobility Managment is part of the HME Media Group. The HME Media Group delivers the latest news, legislative updates, and product and technology information and education to dealers/providers, clinicians and other professionals in the home medical equipment industry.) If you scroll through that article to "One Device, Many Consumers", it specifically mentions the categories of patients who will benefit from lift/transfer technology, including neurological diseases such as ALS.

Plus, if you also cut and paste in your browser:

Dad with ALS walks daughter down the aisle at wedding - TODAY

you'll also see a Today news report (and video) from July 2014 of another PALS using the Rifton TRAM - and I defy anyone after reading that news report and watching the video to say that he (and his daughter) did not find this equipment "invaluable".

Those are just a couple of articles/items that we found useful (along with numerous other supporting documents) and helped us make an informed decision when we were researching transfer and mobility devices for my husband. But, of course, we didn't make our final decision until we had demo'd the equipment over a two-week trial period.

As for testimonials, I would have thought that any testimonial or sharing of ideas by CALS and PALS on this forum would be viewed as nothing but positive and helpful. As I already said, Paulette's testimonial was invaluable to us (as were all the other ALS user testimonials) and in no way "hawked" the bed. Just like me, Paulette was doing something proactive in the hope that it would also help others.

We've been 4 years into the world of ALS (Mario was diagnosed in 2012) so I think we've got a pretty good grasp on the disease/the possibilities - we're just new to registering on this forum. And there's not a day goes by that we don't talk openly about it and research whatever we can to further understand and try and keep up to date on what's going on that might someday be of help. And of course we pray lots!

Finally, I just want to add what my husband had to say (a censored version) when he read Laurie's comments:

"I don't know why you're bothering with this forum. All the work you put in try to help and that's what you get. Sounds to me like Laurie’s got a real problem with it all. Comments like hers just create negative energy and you certainly don't need that. I shouldn't bother to explain anymore about the equipment if I was you, it works for us and that's all that matters. You should spend the time and energy on yourself instead of the forum."

And do you know what, my husband is absolutely right.

I thank God every day for my wonderful husband. He's my life, my love, my inspiration, my rock and my world is a much brighter place because of him!

"We rise by lifting others."
 

Nuts

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Sharon, I thought Laurie's last post made the reasons for her caution clear. Some of the folks here are dead broke and don't have the resources that others of us do. She is simply making sure that someone new, who is desperate for solutions, realizes that some solutions only work for a short time and that there are lower tech and less expensive solutions. She has never. Bad mouthed anyone or any idea here--she just advises caution. I think in the case of the tram that caution is important, because it doesn't appear that it would be useful once a PALS loses back and neck strength, and some of our PALS reach that stage much faster than others. That doesn't mean it's not a good device for someone who is slow progressing and/or has extensive means (Augie, who walked his daughter down the isle, is a VERY, VERY rich man).

I'm sorry that you and your husband considered Laurie's caution to be an attack. It wasn't--we don't do that here. We discuss and even disagree respectfully, and above all, we help each other. That's what this place is all about, so please try not to take it personally when someone offers another view of something you offer here. I think if you can find the time to read through some of Laurie's old posts you'll see just how helpful she is and how much time and energy she devotes to supporting us--long after losing her own beloved husband.

Becky
 

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Sharon, don't let the way any other member here may post stop you from helping others. You have had lots of positive response here so I think it's obvious that you have already helped by the replies I'm seeing. Not everyone can agree on every detail, and some people write more sensitively than others.

You have a lot to give, and I suspect you will need the support you will find here too. Stay with us, it's worth it :)
 

JimInVA

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Sharon,

So much good information. Thank you for taking the time to share your experiences and what has worked for the two of you. I must admit that I find myself a bit dismayed when links to equipment that works for you... and which may be helpful to others... are arbitrarily removed by moderators. For the PALs that still can access the forums, a link can be so much easier to click. My PALS can barely click a mouse and actually being able to type is no a long ago memory. I will trust that there was good reason for the removal. Again, thanks for making the time to share with us... for we know that "finding time" just doesn't happen!

My best!

Jim
 

JimInVA

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Interesting... after my last post, a whole slew of previous posts suddenly appeared that were not there before. Is there a full moon?...
 

Nikki J

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Must be a glitch in your computer Jim unless you see posts after Tillie's before yours. Removing commercial links Whoever did it is forum policy and it is in the terms of service that unacceptable links include promotional or advertised websites. This is not new or different and in fact Laurie made an exception by allowing the links that you see in the original post. None of the current moderators made the rule
 
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4tloml

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I hope everyone will continue to share what works for them and why (and as Jim says, links are very helpful and easy). I also hope others will share their concerns about the products they see, whether it be cost or potential length of use, or other products that work better for them, whatever.

This is the first place I make my pro/con list when it comes to helpful products, and the first place to ask about something we may be considering. I highly value the comments offered and the time & energy expended to do so.

One example for us was a question about the EZ Lite Cruiser (Wheelchair). We got a lot of good advice here. Some questioned the wisdom because it won't last the entire duration of the illness, but for now it is tremendous! It's batteries last for miles and miles, it folds like a stroller and is light so I can lift it in and out of the car by myself, which also means my husband can get out and around with a power chair but without having to get a wheelchair van. The deluxe model has a multi-position reclining back and seatbelt to help as core strength weakens and we added the headrest for future need. As long as he can transfer, it will continue working great for him. It was $3,000, but what it's saving in not having to get a new vehicle and the mobility it provides before he qualifies for a full Medicare PWC is worth it. We both love it. Even so, the concerns expressed here when we first asked for advice are completely valid and very much appreciated. There is wisdom in numbers.

Sharon, I hope you'll keep reading and posting here. We're like any family--we don't all think alike (and that's part of our strength!), but we're all facing what must be about the hardest challenge life can throw down and we're all in it together.

With great affection to all the CALS & PALS here.

Cindy
 

affected

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Cindy, well said!

The biggest thing about this disease is the incredible variation in how it affects our PALS and when. For Chris that pwc would only have worked when he was still walking because he deteriorated from the top down.
For so many PALS it would be a wonderful piece of equipment for enough time, as you noted, to pay for itself. I'm so glad to hear you are having such success with it!

We sure are a family here :) (warts and all)
 
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