New? Introduce Yourself - Say Hello

[color]

Hi there,
I, just like Paul, am here as a result of differential diagnoses: SCA (Spinocerebellar Ataxia) or UMN (Upper Motor Neuron) disease. Whatever I have is most likely some kind of hereditary, progressive motor neuron disease -- symptoms ranging from ataxia (speech, balance, coordination), hyperreflexia, sensory loss, and cerebellar atrophy. I was initially given the "SCA, type unknown" diagnosis in 2005, based primarily on my neurological exam, family history, swallow eval and brain MRI findings. However, upon seeing an Ataxia Specialist for a third opinion a few months ago, he tweaked the dx to "Hereditary Spastic Ataxia" (since spasticity is a universal symptom for all affected family members and also, due to the fact that my mild spasticity was so outstanding to him, I guess...)
The clinchers of my frustration are that 1. all commercially-available genetic testing for autosomal dominant Ataxia types to date has been negative (as have a few Hereditary Spastic Paraparesis types); and 2. as per the latest neurologic exam that I had down at the National Institutes of Health last week, the ataxia part isn't really there...I must have been having a very good day, huh?!
Hmph, go figure!! Personally, I chalk up the slow progression of ataxic symptoms in my case to moderate exercise and healthy lifestyle (diet, self-care, etc.).. Unfortunately, I don't know how you can "mask" the latter symptoms (spasticity and hyperrelexia), especially in a clinical setting. And so my brother, who is more advanced than me (though only 2 years older) and undoubtedly tests positive for outward/obvious ataxis symptoms, is going down to NIH to present himself, on my behalf...my thinking is that if I can show the study team what's in store for me (potentially), maybe then they'll be OK with the ataxia part being in the picture.
Anyway, thanks for letting me vent and I look forward to asking questions and offering support when I can.

Take care,
Color

[thomascr]

hi to all,
my name is dottie, my husband is tom, he was dx almost 1 year ago to the day.the most i can say right now is scared. thanks for being here

[BethU]

hi to all,
my name is dottie, my husband is tom, he was dx almost 1 year ago to the day.the most i can say right now is scared. thanks for being here

Hi, Dottie ... welcome to the forum. I am so sorry about your husband's dx, and I can certainly understand your fears. There are lots of really compassionate and experienced caregivers on this forum, so don't be afraid to ask questions and "vent" when you need to. You'll get total support here.

I'll be praying for Tom ... and for you.

Blessings,
BethU

[MtPockets]

Welcome to the Forum all new members. I'm sorry for the reason you had to be here, but glad you came. Let us know if we can answer any questions for you.

[Al]

Ann, ajohn832, I moved your post up to the General Discussion forum. You should get more answers up there.

AL.

[barbell]

Hello to all here on the forum. Thank you for all of the posts that help me get through all of this. My husband was dx in May 2006, the day our son graduated from high school, after several months of symptoms. His is bulbar onset. His voice is gone. Swallowing is extremely difficult. He will not get a feeding tube and will not even go to the doctor. Our 13 year old daughter only knows that he has a "condition". Bless all of you that are going through this journey.

[MtPockets]

I also was dx May 2006, but it is Limb Onset ALS. Thankfully it is slow progressing. I hope you find the support and help you seek here on the Forum.

[deem]

Hi everybody,
I just wanted you to know. I'm here!:-D
Thanks so much for all of the information on this site, I have a feeling I have just begun to scratch the surface. I can really feel the love here.
My Mom was diagnosed with ALS a few weeks ago.
I am running late for work but I wanted to sign up and post a quick note I will be back when I can.
til next time
Dee m

[Al]

Hi deem. Welcome. Jump in whenever you get the time.

AL.

[gladys923]

hi all,i'm new to this type of forum,so bear with me please.My daughter has the als that is
handed down from generation to generation.She has not been dx yet,but she believes she is having the first systems.Her problem right now is finding the help she needs.I have heard there is help for persons with little income. Does anyone have any ideas.My daughter lives in the Birmingham A.L. Thank you Gladys

[Al]

hello Gladys. Welcome to our forum. I am sorry about your daughter. The ALS Association is helpful but I'm not sure if they are in Birmingham. Click on www.alsa.org and look under In Your Community. The Muscular Dystrophy can help as well. Use this link and put in her zip code to find a nearby office. Hope this helps. http://www.als-mda.org/locate.html

AL

[missmissy]

Hi everyone, I'm new here. I saw one of my sisters has signed up - our mom has ALS and is progressing very fast. I'm here to find support and advice. Everyone seems very loving and caring and I've learned a lot just by "lurking". Thanks!

[Al]

Welcome missmissy. Sorry about your mom. May I ask who your sister is? Jump in on any of the forums and ask what you want to know. Somebody will answer.

AL.

[L4dybugg]

I am a newbie, and I am so thankful that I found this site, it has really been a great help to me since I've been here. Still learning my way around.

Blessings to all

Hugs Lori

[emma1230]

i am so confused! I have not idea how to write a post.. can someone help please?

[emma1230]

I guess I will write here and hope someone answers.. i just moved in with my mom to take care of her.. she has als.. bulbar onset I guess you call it.. in the last few months she has lost a ton of weight and is very weak and can hardly move. In the last month she can't sleep.. NOT AT ALL! she's even on ambien cr and it doesn't help.. she gets up every 15mins.. she can hardly move so she slides off the bed and then it takes her forever to get back on the bed.. she says that she is closter phobic in her body? (sorry if misspelled) what can I do for her? if i wake up every 15 mins to help her all night I won't be able to care for her or my two girls 2 years and 5 months..
what do I do? I am so lost, she's always mad at me, i think she hates me most of the time because I don't do anything right! sorry this message is all over the place, but I just don't know what to do..

[BethU]

Hi, Emma ... I'm so sorry about your mom, and what you are going through.

You said: she's always mad at me, i think she hates me most of the time because I don't do anything right!

Your mom's anger is a part of the ALS. This disease messes up our emotional responses to everything ... we can laugh or cry at things that aren't funny or sad ... and get angry at people who are trying to help us ... just exactly the people we need the most !!! I've had a LOT of trouble with anger at people trying to help, and the clinic I attend gave me some meds (I'm in a clinical trial of them, but there are lots of other meds that can help). These meds completely wiped out all the anger and agitation I was feeling and "acting out." Your mom's waking up and getting out of bed every 15 minutes might be part of this agitation, too. Feeling like you are claustrophic in your own body sounds like an ALS emotional problem.

Can you contact your mom's neurologist? Tell him/her what your mom is going through. If they can restore her emotional balance, she will be much more peaceful, and hopefully, it will be MUCH less stressful on you. You've done a wonderful thing moving in with your mom, but you need to take care of yourself and your little ones.

Hang in there,
BethU

[sukilou]

I want to introduce myself, Lonna, age 64, and say hi. I joined a few weeks ago, and have been reading daily since. The info on the forum has answered a lot of my questions, and I have found you all to be very supportive, even just by reading the posts.

This Monday (9-29) my neurologist gave me a dx of MND, Probable ALS. I am being referred to the Providence ALS Clinic, Portland, Or. Even though I was suspecting this dx, the reality of actually hearing it from my neuro has brought on so many feelings. I know that I'll be asking more questions as time goes on. For now, I want to say thank you for being here. Lonna, from Troutdale, Or:smile:

[BethU]

Lonna, welcome. I'm so glad you found us ... but sorry you had to. You will find lots of support and friendship here.

Take care,
BethU

[Al]

Welcome Lonna. Sorry about your dx. Feel free to jump in and ask what you need to know.

AL.

[MtPockets]

I'm glad you found the forum, but sad for the reason you had to look. Welcome to the best support group on the net.

[brendapals]

Yes, welcome to our big family! you will find a lot of support, feel free to vent, or ask, we all laugh, cry, vent, rant, joke, grieve together a lot
Never let up,
Never give up,
Never lose faith,
brenda

[Sheila T]

Hi my name is Sheila T, I'm new here and looking around. I have ALS, dx August 2004. I live in the USA :-)

[brendapals]

Welcome to our family, Sheila. I'm sorry you had to find us, but I'm sure you will learn quickly that you have found much support!
Keep the faith,
brenda

[MtPockets]

Glad to see the new members. Please feel free to jump right in with any questions or thoughts you may have.

[GlenBrittle]

Just wanted to say hello.

I was dx'd Oct 2 2008 with ALS. 1 week today.

Is there a guideline to determine how far along I am ?

I am still walking with a floppy left leg and a cane . Some loss of strength in left hand. I slur my speech (minimal) when tired.

I am just gathering info now. Getting tested for heavy metals next week.

Gotta run.
Glen

[MtPockets]

Sorry no graph or guidelines as each of us progresses at a different rate. I wish I could give you a clue. It is all up to the Doctors and tests to come. Good Luck with it all and let's pray it is not ALS.

[rjmlsh]

Hi, I'm Jenny who lives in the U.K. My brother-in law lives in the West Indies and has had MND for 2 years now. Thank you for this site it is so helpful to be able to talk to people with the same experiences. It helps to come to terms with the situation. My thoughts go to everyone. Jenny

[Al]

Welcome Glen. Sorry to see another fellow Canadian here. Welcome to Jenny also. Sorry you had to come looking for information but this is a good place for that and support.

AL.

[GlenBrittle]

AL , Kudos to you for this site.

Its one of the few that are not trying to sell me something.

From what I am seeing so far , talking to people that have or know people , its all about attitude. :lol:

Glen

[Al]

We don't allow anything that isn't ALS related to be on the site. Nor do we allow any silly supplements or false hope cures. We also have the best members of any of the other sites. Glad you found us but sorry you had to come looking.

AL.

[TanDaMay]

my daughter was DX with ALS 14 1/2 years ago when she was only 23 years old and a SR. in College about to graduate that following May in 1994 - she did graduate with a degree in Exercise and Sports Studies-

She walked longer than most - about 5 years after DX - in '04 she get a PEG and in '08 on her 36th. birthday day she was vented - so that will be 2 years ago this coming Nov.

She communicates using ERICA - and she can also comtrol some of the things in her room using ERICA - I stay home with her after retiring 6 years ago - We had a Share the Care team from our church stay with her for 5 years so that gave me 5 more years of teaching -

We have done a lot to make people aware of ALS over the past 14 years -

her is my blog:
http://linda-frances.blogspot.com/

You can read about her in May 2008 listing on my blog and also on the Ride for Life site or just Google Marcie Gibson and several stories about her will come up

I am her Mom - Linda

lindafgibson@tx.rr.com

[kinma]

I was diagnosed 10/3/08 and have been lurking. Thank you for all the infomation. I think I'm still adjusting to the dx.
Kris

[BethU]

Hi, Kris ... I'm so sorry for your dx. It is a major shock to get that news, and it will take a while to wrap your mind around it, I know. Join in when you are ready. We will all be pulling for you. Let us know how we can help.

Take care.

[BethU]

TanDaMay ... welcome. Your daughter has a remarkable story, and I am so glad you and she are spreading the word. Thank you for joining the forum, and sharing your stories!

[brendapals]

Hello Kris,
Welcome to our huge family! I'm sorry you had to find us, but you are in the right place for a lot of support, laughter, tears of joy and sadness, and more support. Everyone will try to help all they can, I was dx in June 08, and, yes, it seems like yesterday, but you just jump in whenever you're ready.
Take good care,
brenda

[Zaphoon]

TanDaMay & Kris,

Welcome to this wonderful, enlightening, supportive and often fun forum.

Zaphoon

[MtPockets]

Welcome to all the new and not so new members. I hope you can feel a part of the family here on the forum.

[Janvoe]

Thank you so much for this very wonderful site. I feel that there is a lot of hope and help for patients and caregivers on this site. I am a caregiver for my husband here in New Mexico. He has had ALS for three years. Looking forward to staying in touch with others fighting his awful disease.

Janice

[Al]

Hi Janice. Welcome but sorry you had to come looking for us. Hope you get answers or support here, whichever it is that you seek. Jump in on any of the forums. There is a search tab up above and a FAQ section that details how things work.

AL.

[Zouz]

Hello everyone. I am 55 male living in the East Bay San Francisco Area. I've just joined and have been reading some of your posts the past week. Great information to share I must say and glad to join your group. Thank you all. :smile: I've been diagnosed with ALS mid September and have seen myself getting stiffer, lose strength and some muscle over the past few months. Did I also mention facsics and cramps? My EMG showed most nerve problems in right leg and right arm. Some more along the waist and mid chest, so I feel some difficulty taking a full breath and pain in chest when I sneeze. My cough is not as full as it used to be... Went from being able to hike the Sierras last June to barely able to walk and maintain balance today.

I have some questions and comments which I will post in other threads. If I can share anything from my side to help anyone (with whatever I've come to know about ALS) I am here to share as well.

Cheers!

Zouz

[Al]

Welcome Zouz (interesting screen name ) Sorry about your dx but glad you found us. Jump in when you feel like it.

AL.

[Zouz]

Thank you Al,

Zouz is my nickname for a more interesting name; Ziyad. Lebanese origin name meaning too much/excess... and that's is how much facsics I have :lol:

Z

[Jimmy's sister]

My brother was just diagnosed with ALS. He is 49, married with 3 kids...the youngest will be 13. Jimmy has always been a hunter and fisherman and loves the outdoors and his son just started to hunt with him. He is so depressed about all of this. Our mother is in the end stages of emphysema. What can I do to help him? He will not tell Mom about this diagnosis. He is going to Hershey Med. Center.

[Al]

Hi sister. Welcome but sorry you had to find us. Being an avid hunter would put Jimmy at risk of Lymme disease. I hope they tested him for it.

AL.

[Jimmy's sister]

Thanks AL,
He has been tested for Lymes but does not have it. We had been so hopeful. I would love to find a book for my nephew who will be 13. Jimmy is his hero.
Jimmy's sister

[Al]

Not sure if this what you had in mind but check this link.
AL

http://www.alsindependence.com/Telling_Children_About_ALS_MND.htm

[septmommy]

My name is Michelle and my husband was just diagnosed officially last week. He is 36 years old and a fireman ( very active) and prior military. We are just learning all we can about ALS and what ther is out there for veterans. Thanks for any and all help that you can give us. i am glad there is somewhere for us to go who are new and have a million questions. Good luck to all- Michelle

[brendapals]

Michelle,
Bless you, I'm sorry you had to find us, but I hope you will find lots of support and friendship on here.
It's the best bunch of folks anywhere!
My husband is a retired asst fire chief and I am a nurse. I was dx in June 08. I am 48.
Ask away with those million questions, I may not have answers to any of them, but you will find tons of support on here,
Never give up,
Never let up,
Never lose faith,
brenda

[MtPockets]

Glad you found the forum Michelle. Grandpa AL was a fireman, and I spent about 10 years as one myself. Let your hubby know, he has friends on here.I hope you will find the support and answers you must have at this time.

[SouthernPoet]

New to this site, as I just joined a few minutes ago. I have been dealing with my problem for approximately seven months, but was diagnosed with ALS the end of June 2008. I look forward to meeting or interacting with many of you and I truly appreciate the opportunity of joining this site. Thank you.

[Al]

Welcome SouthernPoet. Sorry about your diagnosis but glad you found us. Use the search feature and the FAQ to find what you need or just jump in on a forum and ask.

AL.