Introduction/Question

[morrisostrom]

I wanted to introduce myself and make certain it is okay for me to be here.

I registered a while ago, but haven't had the chance to pay much attention to the forum yet. I plan on paying more attention over the summer, so I figured it was time to check-in. I am working on my doctorate in counseling psychology, but more importantly I am a member of a team doing research on the experience/concerns/needs of PALS, specifically whether the primary concerns and needs of PALS and CALS are addressed by health professionals and the literature.

The individual who pushed for the research project is the Dean of my college Living with ALS, Part I: Music adds solace to Bruce Kramer's journey | Minnesota Public Radio News; a PALS. He experiences a disconnect between what he is most concerned about and the purely medical issues that his Doctors are often most concerned about. That led him to wonder about how common that disconnect was and what could be done about it.

What I would like to do is be a fly on the wall and try and get a sense of what people are concerned about. At some point, if anyone is willing, I would love to ask some questions about ALS, but that is nothing immediate.

Sincerely,
randall

 

[CGARS]

What I would like to do is be a fly on the wall and try and get a sense of what people are concerned about. At some point, if anyone is willing, I would love to ask some questions about ALS, but that is nothing immediate.

What people are concerned about is dying!

Having your muscles stop working one by one, till their all dead is a bit concerning.
Knowing that there is no cure or really any treatment is concerning.
Knowing you're not going to see your kids grow up is concerning.
Having to watch everyone and everything around you, while being confined to a chair or a bed is concerning.

I am a very positive guy, but still have a million concerns.
Good luck.

 

[sadiemae]

From a CALS petspective I am concerned How we are going to survive once my daughter graduates high school next yr and our income will drop by a third. I worry that if (when) my husband dies I will have ni income. I am concerned the effects of living with a parentwho is dieing a little bit everyday will have on my teenage children. I am concerned that if my husband needs to go to the hospital they will not know How to care for him.

 

[sadiemae]

When our PALS get sick D oct ors automatically attribute it to ALS. And there attitude is what do you expect me to do. He has ALS

 

[HelenL]

You know what concerns me? All of the above, and the fact is, I'm LIVING with ALS right now. I can't walk, and it's affecting my core and hands. But I FEEL perfectly fine, and I definitely don't feel like I'm going to die. At least not anytime soon. But there is so little information about this disease, even in my somewhat more educated area, with all the research hospitals and universities. Does anyone teach a course in the day to day LIVING with a fatal disease, this one included? Yes, we're going to die from this, a piece of us at a time. We know that.... but I'm not ready to hang it up anytime soon with 3 kids, 12-18 years old.

What drives me crazy that as our income plummets, EVERYTHING that we need costs more than triple what "normal" people need... 30K plus for a van, 30K for bathroom, etc. And a handicapped bathroom that actually works for us in a public setting would be incredible, the toilets aren't high enough, the grab bars are in the wrong spots, etc.

So the more education you can glean from these pages is fine by me... and if you have any questions, please feel free to ask. Just do us a favor and take the knowledge you gain and share it with others. And advocate for those of us who cannot.

 

[CGARS]

Thanks Helen,
I agree 100%

 

[Toto's Dorothy]

Helen, you were spot on. Except my 3 youngest are 12-19.

Morris, ask away. And "Do good" with the data. We need all the help we can get.

 

[hjlindley]

This affecting my hands. Dressing is a chore. Cooking (once my great love) is a challenge. Everything takes longer. Aside for a funky walk, I look fine. Every system in my body except my skeletal muscle system is fine. I have gone from being strong and independent and kick butt to wondering if I could even defend myself. And don't get me started on the "handicapped" toilets! At 6' with weak legs, they are a joke. I may be chipped away at by this demon for years. I have finally found the love of my life in the second half of my life, and now this. I am grateful I don't have young children, that I can still talk and swallow. But like others have said, this has made me clumsy not stupid. It is rare enough that getting sufficient statistics in clinical trials is a challenge.

Each ALS patient has distinct presentation...different muscles are affected in all of us. While I may worry about dressing and personal hygiene, others worry about breathing. But it is still the Sword of Damocles to all of us.

Hollister

 

[notgivnup]

We are concerned about?.... it all. No one has any answers for us. In the 100+ years since it's discovery or in the least a name for something they no nothing about or how to cure it. I also agree with Helen 100%. Please someone find a cure. We can split an atom, travel to outer space and a million other discoveries, WHY can't someone be concerned enough about this demon to find a cure?

 

[glupavomomiche]

Hi Randall,

Well needless to say, you have touched a nerve with everyone... and I don't mean that in a bad way! I have no problem with you being a fly on the wall. Ask away... obviously there are many here willing to tell you anything you want to know. Good luck on your doctoral endeavours. If this project turns out to be dissertation worthy for you, I'm sure you would have a wealth of survey takers and be able to receive excellent data from this large pool of PALS and CALS!

 

[sadiemae]

I believe we are all concerned that we have no spokesman for ALS. Steve Gleason of the Saints is bringing some awareness but it is not enough. I would never in a million years wish this on anyone. But if Brad Pitt or Sen John McCain or Bruce Springsteen or President Clinton were to get ALS. People might lisyen

 

[Toto's Dorothy]

See that's exactly what we need. Look what Rock Hudson and Elizabeth Taylor did for A I D S. And Montel and Michael J Fox for M S. Surely out of all the celebrities we have or had, one has been touched by it.

 

[sadiemae]

Nancy O Dell(Entertainment tonite) lost her mother but doesnt do much any moreHugh Laurie (House) has Done Nothing. Ben Stiller does a bit. Dr Kervokian went to jail for allowing PALS die a dignified death, and now some people are saying Lou Gehrig did not have ALS. Who what Where why and WHEN. THIS HAS TO STOP!