Lack of Technical Advancement in Daily Care

[Uncle Bob]

I have been researching the means available to allow an ALS or similarily disabled to sit errect with head up and have support from what I call the habitat environment.

I have been in discussion with very sharp individuals that think we can make progress in design of habitats for the "combatee" to make daily bodily functions, rest, and movement possible within the "habitat".

Imagine body formed plastic sections that provide support and the ability to move.

This is my first post and I looking forward to starting the dialog.

Uncle Bob

[Geo]

What individuals have you been in touch with ???? Evidently you havent done much research on the subject
of Motor Neuron diseases. The reason people can not hold their heads up ,function as we do is the motor mechanism that makes movement possible has been compromised ,whatever it may be, Viral or Enviroment
This must be accomplished by way of the Brain . Motor Cortex . If someone is trying to sell you a Magic Bullet
Think twice on listening to them . There are lots of things that can help ,but no magic bullets as of yet . I will tell you one very important fact Learn Learn Learn about Motor Neuron Disease and not about someones magic cure , Learn how the Brain works . Geo

[jimercat]

Hey Bob!

Are you talking robotic devices?

[Al]

Ok Bob. First of all we're people, not combatee's. What the heck is a habitat environment. You have started a dialogue but probably not what you were looking for. Your profile says you have ALS. You must still be in the shock stage. Could you explain what the point is you are trying to make without sounding like some silicon valley techno geek. There is no need to talk double speak here. We're people living with something that's not a lot of fun. If you were trying to be funny, don't give up your day job. You weren't.
AL.

[Steve100]

Lets not scare him off until we know what he means, eh? He may be a scam artist or he may be trying to help.

[Marjorie R. Wilcox]

We're all frantic for helps and cures, whether or not we are in denial or accepting our plight.
As I read many threads or posts on the forum, I can see that ALS victims are looking for the best neurologist, the best medicines, the best mechanical supports, the newest and latest vitamin or herbal regiment etc. Of course we would almost try anything.... and I say almost because I hope we still use our brains.
We must be careful that we aren't taken advantage of because there are people out there who just want to take our money and fool us into buying.
It is to me obvious, that there is a time of sorrow and denial after a DX of ALS. And we all must go through thinking, well maybe this is something else. If you have abnormal reflexes, fast or slow, abnormal blood tests in any form, and EMG results not the norm, it is time to accept the DX. We can't walk right or have our strength we used to because of the damage in the nerves( and then the muscles) from the brain. You can try anything... but your best neurologist can only sympathise with you and provide you with the best supports...... no slowing of the progression nor a cure YET!
My Rick and I found that we didn't get a direct DX either. The doctors tippitoed around the subject for a few months. Maybe they didn't know how to tell us about the doom! It didn't change the DX. Hurrying wouldn't change the DX. taking pills won't change it. You should do whatever helps you. If it helps you, I say do it. Let's not judge each other for trying things. What have we got to lose? Our lives are in the balance so we do whatever we think will keep us sane.
So please be gentle, everyone, with anyone who posts on the forum. They might not understand all that ALS brings and need to be embraced with compassion and understanding before you go at them with both guns. Thanks everyone for listening. Marjorie

[Bobby C]

Marjorie, what a well thought out, intelligent response. I did pick up on one comment that may apply to me: "doctors tippitoed around the subject" for a few months. Perhaps they do this because some patients and family members go into a state of denial when told what the diagnosis is. I think I was, and perhaps still am.

[CindyM]

So please be gentle, everyone, with anyone who posts on the forum. They might not understand all that ALS brings and need to be embraced with compassion and understanding

Once again, Marjorie, you hit the nail on the head. But we are all stressed in some way by this disease so it is no wonder emotions run high.

Getting back to Uncle Bob's statement: I, too, wondered if he was talking about robatics or some other assistive devices. After seeing some PALS who can no longer hold up their heads, the possibility of building some sort of "enviorment" (as Bob puts it) around the wheelchair sounds interesting...

[Geo]

Marj Where were you when i tried to suggest TENS EMS as it works for me . An artificial enviroment has to be under the control of the Brain or its just like a Permanent Life support Machine . We all know hospitals have these and they will Bankrupt you i dont want this for my spouse ,this is why i chose DNR Do Not recesitate . and no life machine . I watched my sister lose her home from hospitals getting control . As is aid to Uncle Bob, Educate Yourself My friend .Im not going to leave my wife Pennyless . Geo

[Lorie]

I agree with you. My brother was not DX for 7 years. (3 years ago).I believe with the DX
of ALS is mixed with a lot of Emotions. And it is ok for people to want to do something about it. To make their Lives a little easier. Without the Dreams and Reality of a Helpful Treatment or a "Cure". What else would we have. Just Acceptance and Live with it?? No way!!! Full Steam Ahead.

Grampa AL. I Love Ya!!


Lorie:-D

[hearts_and_thoughts]

One of the first extremely noticeable features my brother presented was not being able to hold his head up. Several braces were offered but none were very good for him. Putting "new" equipment together is not a bad idea. I presented my problem of lack of portability with bipap to Respironics, the manufacturer today and I would hope that anyone else with this problem would also make a request for a bipap backpack to give easier portability.

I can't quite understand the "terms" he is using, but I certainly hope he isn't trying to scam somebody.

You all are a great group and I am so blessed to find you! Thanks for being here...there...in the computer box thingy!!!! Gosh, having this online support group reminds me of some science fiction movies I used to watch as a youngin. Technology just astounds me. I am still in awe over fax machines!!!! So, who knows, perhaps this person may speak strangely, but maybe he will invent something that we can't even comprehend!! One can only hope!!! But, then again, maybe not...

Peace to you all,
Mary Jo

[Vicki S]

I didn't go through denial, sadness or depression with my diagnosis. I was depressed for 7 hours and then I realized everybody dies I just have idea when. Now my husband has gone through every stage that I was supposed through.

I have a higher toilet seat with handles and a bath transfer bench in my bathroom downstairs. My husband is doing everything can to make it easier for me.:-D