Time for a Roll Call

[skimbrell2]

Hi everyone!! I have been worried about each one of you. Please lets do a roll call and see how eveyone is doing.


Sheila Kimbrell:)

[tom borchert]

:eek: Roll call-

I am still here. Using powerchair most of time and scooter a little. Eating, I must be careful and drink lot of water to get it down.

Tom,:)

[BobbyB]

http://www.ableto.co.uk/images/wheelchair_old_man.gif

im here to, still kickin or wheelin in my chair.
im staying busy with the als/mnd registry, over 400+ pals signed on now from around the world.
*******************************.com/images/misc/logo.gif
have been posting alote at ALS - Brain Talk 2 Communities
http://forums.braintalk2.org/

and at
PatientsLikeMe
A new system of medical care by patients, for patients
a.. Discover better ways to manage your disease.
b.. Benefit and learn from shared experiences.
c.. Connect to those making a difference in your disease.
d.. http://www.patientslikeme.com/

http://myspace-630.vo.llnwd.net/00930/03/63/930713630_m.gif

[Bluepete]

Still alive and kicking :o

[Alison P]

My brother Chris is doing okay...trache, vent, g-tube June 2004. Eating and talking went November 2005....was diagnosed with diabetes in August 2006 and is on insulin therapy. Despite all of this, he is stable and (thank God) still with us.

Love to all,
Alison

[tom borchert]

Bluepete,
Nice to see you back.

Tom,

[wlampa]

I am here as well. For those of you who don't remember me, I am the med student that thought that I had als. I went through a battery of neuro tests two years ago and they found nothing. I am happy to say that I have not had any symptom progression for two years. Although, some of original symptoms are still here, fasiculations, and some weakness. But, so far so good. I am in my third year of med school right now. I am very interested in what goes on in the als community and the reasearch that is happening. I also try to fund raise for reasearch whenever I can. So I hope you don't mind if I continue to put my two cents in from time to time. I'm glad that BT is back up and running and I hope that all of you are doing well. W.

[Dennis]

It's just like coming back to school at the end of summer vacation.

[wallyw1]

Wally is feeling much more comfortable since starting bi-pap and since using Enemeez for constipation each day. While he is no longer able to walk, hold his head up or use his hands, he is still eating by mouth (pureed food).
He is still able to use FC (facilitated communication) and asked his Dad to take him to the ocean--his favorite spot is Schoodic in Acadia National Park in Maine. His Dad spent the summer modifying our 20 year old motor home and we just returned after a 10 day trip. He can still smile and what a smile it is--makes us all so happy to see that smile.

Wally's Mom

[Agios]

Agios here...Hanging tough and wishing everyone Peace, Love and Energy!

[lisag]

Glad to see that you guys are hanging in there too....last year was pretty rough.. but Gary is still here.. he can still communicate with his speech computer..and can still come off the vent for showers..function has remained about the same over the past couple of years or so..he's made it over 7 years now with this disease..
However , the past few months he has suffered several hospitalizations due to illeuses (sp?)( bowels quit working completely temporarily ) but fortunately the problem seems to be resolved with new meds..(no surgery although he came very close to having to have a colostomy)..
He also has suffered a pnuemothorax ( partial colapse of the lung) that too was corrected ...with a temporary chest tube and ventilator setting changes..pretty scary for awhile but he made it..we were told he has a 50/50 chance of developing another one after the first one.. and those are just the odds with pnuemothroraxes...once you have one you have a 50% chance of getting another..but these days we don't worry too much about odds...
He also has continued to battle pnuemonias..but not as frequently as before... the "new" trache which you can suction above the cuff has helped immensely... as well as less frequent changes of the trache..6 month changes now have greatly reduced the risk of frequent aspiration of secretions..
On top of that we had a major computer crash..which kept us off line for months,,lost my old e-mail address due to it..then we lost a caregiver..I have had my own health problems..and well..such is life..
Anyway...good to see some very familiar faces..wlampa I definetly remember you...good to see your back in med school..congrats...
shelia..your amazing..as are all of you guys..
Take care...Lisa G formerly known as linda5

[Sharob]

Hi Lisa, great to hear from you again.
Glad to hear that Gary is hanging in there still,I'm much the same except I've had a month in hospital during march when I stopped breathingand had a trache fitted.I spent a few days on vent then I started breathing on my own again. So now I've got the trache but no vent at moment.

[Alison P]

Hey Lisa!!
I am so happy to see you and that Gary is doing okay. As you may have read, my brother Chris lost his ability to speak and eat in November and on top of everything, he was diagnosed with diabetes. Despite all this he is stable and thank God, still with us.
It is so good to see your post :)
Alison

[lisag]

Shariob, so glad to hear from you as well...good to hear you can still breathe on your own and pulled through the experience...
Tom,Bobby, Bluepete,Agios, Wally's Mom, and Alison very good to hear from all of you as well..
Dennis and Falsehope nice to meet you...Lisag aka linda5

[skimbrell2]

I am so delighted to hear from you and also to hear Gary is OK. Please keep us posted.

Best Wishes

Sheila Kimbrell
mkimbrell2@sowega.net

[boomer]

Boomer is here........I think........yep ? Yep I am here!

[BobbyB]

bump up

tell us how your doing pals n cals please do:)

[Chad]

I'm hanging in there but losing ground. Still good to be alive. So great to hear from all of you. Best wishes, Chad

[stelmobarry]

5 years, 5 months in and still enjoying life. Didn't think I would see my 43rd birthday, but it's only a month away. Wheelchair bound, but still breathing, speaking, feeding myself. Live alone with daily help. Hanging on and waiting for the breakthrough.
Life is good, enjoy it!
Barry

[JAH42]

Still here, kicking *** and taking names. Still eating like a horse orally, most strength in hands and arms are pretty much gone but I still manage to get by. Includeing on set I am pushing around 50 months.

Jeff

[marsha]

Hi,
I'm Marsha Smith, Cary Smith's mother. We live on St. Simons Island, GA.
We moved here from Atlanta. You and I have communicated before. Cary lives near me in a nursing home. This is necessary because I live alone, and I am very small. I cannot handle Cary's weight very well although he only weighs about 158 lbs. Sounds like Wally is holding his own. That's great!
I am with Cary every day. We have a handicap van donated by the ALSA in Atlanta. I take Cary out to lunch, the beach, and movies. Cary cannot use his arms or hands at all. He cannot walk and is in a wheel chair when he is out of bed. His voice is weak and words are slurred, but we can understand him. He takes BuNauGao every day. His diagnosis was 9/13/02 on his 33rd birthday. I am wondering about a feeding tube. He eats fairly well, but gets choked sometimes. His FVC level is 38.
Let's stay in touch. I have always admired you and your family. I am a single mom, but my other two sons visit often, and Cary's dad comes down from Atlanta about once a month. Sincerely, Marsha

[wallyw1]

Hello, Marsha--How wonderful for Cary to get out everyday!! You have made a good situation for him.

Last summer Wally was choking alot--we couldn't leave him alone at all.
Then someone gave me a book about feeding for ALS. It seems that cold, hot, sour and sweet can make more saliva and cause choking. Wally was wanting popsicles and I was making him snow cones with lemon and lime juice and honey and ice. Cold, sour and sweet all in one!! I discontinued the snow cones and the choking subsided--he was choking all the time not just with meals. Slowly his ability to chew left him and we are putting his food through the food processor and he is doing quite well.

Has Cary's oxygen been monitored? Wally's was below 90 overnight and he was put on an oxygen concentrator. Eventually his CO2 built up and now he is on a bi-pap. It has made a huge difference.

Take care and God Bless you and your family. Wally's Mom