ER deals with ALS

[Dodgergirl]

Tonights episode of ER deals with ALS (Amyotrophic Lateral Sclerosis), commonly known as Lou Gehrigs disease. I was told the episode is pretty amazing. The disease itself is incredibly cruel. The senses & intellect are left fully functioning, while the nerve cells degenerate and muscles weaken.
Don't forget that ER always starts a minute early...9:59...

[Newcomer]

DG, you must have read the chat transcript from last night. I was trying to explain to people that ALS is very similar to Kennedy's Disease (same symptoms we go through) and many with my disease are misdiagnosed with ALS at first only to be rediagnosed later. ALS accelerates much faster than Kennedys Disease but as we progress we can face the same issues. This scares me to death and I hope that I die another way. Thanks for posting this. I hope people watch tonight.

[Dodgergirl]

Nope, haven't gotten to the transcripts yet, a friend of mine works on ER and told me to be sure to watch. They say it takes a 12 to 18 months sometimes to be diagnosed with ALS, if some with KD are initially misdiagnosed, that means it could take years to get an accurate diagnosis. Wow. Now if only we could get KD the attention, so it could get funded for the research so many need. I imagine if someone powerful is diagnosed with KD, then the disease might get the attention it deserves, along with more funding. They say theres a new experimental drug for ALS, but I don't know too much about it yet.

[Newcomer]

DG are you gonna watch it tonight?

[beautiful_mess38]

I'm going to watch. I'll needlepoint during it so I can stay awake.

[monkey]

Newcomer, please don't let it freak you out. None of us truly knows what the future will bring.http://smileys.smileycentral.com/cat/23/23_1_14.gif ('http://www.smileycentral.com/?partner=ZSzeb008_ZNxmk278CVUS')

[Newcomer]

Thank you for the toughts. We have met many with ALS and we know how it goes for most. at least my disease slows down this process. I am sure it will an emotional show for me and KK but we will be ok.

Thanks for thinking of us.

[Yosemite Joy]

I'm watching it now (East Coast) already cried once, but I am pregnant and cry at Duracell commericals. (Well the one where the kid is playing basketball and drops, then gets rescusitated (sp)).

Yeah, good so far this ER, which is surprising since it has been jumping the shark for a couple seasons worse than Fonzie himself.

[Kahlua Kid]

Just watched the episode with the Professor with ALS.

Really touched home - well, we've been living in this world for 9 years now. Have learned so very much about Lower Motor Neuron Disease - of which ALS (aka: Lou Gehrig's Disease) and Kennedy's Disease are.

Founding and running the Kennedy's Disease Association for 6 years, we have met and talked with so many with ALS, KD, and other degenerative diseases.

When the man said he lost hope when Bush banned embryonic stem cell studies, we too, felt that anguish at that time in the real world and lost a bit of hope also -although we knew other countries were proceeding in this research, which relit that flame of hope. That loss of hope was felt among thousands who had held out hope for that research to help with their medical conditions.

When they mentioned the Pseudo-Bulbar effect, we knew exactly what they were talking about as we had a researcher at a KDA Annual conference talk about that in a very detailed, scientific presentation and they believe those with KD may also experience this, it hasn't been proven yet - no official study. Since KD is so rare, not a lot of funding to research so many things.

Its considered an "orphan" disease - NORD (National Organization of Rare Diseases) helps keep orphan diseases at the fore-front with our Congress and budgets. They are mostly ignored for funding and research. And unless you have someone in your family or friend circle that you care about, why would you want to send funds too? That's why they are largely underfunded... Not like Cancer or a contagious disease you could potentially get yourself...

When the man fought the wheelchair, I remember when Terry fought his, and since moving up here, he hasn't used it much (the terrain doesn't allow for it) and he pushes through. I am so glad he still has "fight". But at times, he like the man in the show wants to give up - just gets tired of fighting the pain, the frustrations, etc... but he isn't that far along yet and we are thankful for that.

Just still hoping for a cure or treatment quickly.

I worry about him falling and breaking bones - or getting aspiration pneumonia (items also shown on ER tonite)... They did a very good job highlighting many of the ins-outs in a non-direct way. Newcomer has fallen here and broken ribs about 2 years ago. He falls quite a bit - his balance is deteriorating, and his muscles have weakened. Sometimes, his legs just give out on him for no reason.

When we lived down south, he fell over backwards in the garage and luckily did not crack his head open.

Its so challenging to live with any kind of disease. And we give a huge amount of empathy and best wishes to all who continue to fight and keep "reaching for the stars"!

Brought up some questions for us once again and things we NEED to do - ie.,durable medical power-of-attorney... do you want a trach? do you want to be on life support? what do you want done? We really need to get that done.

[Dodgergirl]

Originally posted by Newcomer:
DG are you gonna watch it tonight?

Just got home from Merced, yes, I'll have it on, I really want to see this episode.

[Dodgergirl]

That one line, "I don't want to end up a living soul in a corpse" did it for me. That would scare the hell outta me, too. What else can be done to provide research/funding for these diseases?