Old 05-04-2011, 04:10 PM #1381 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Joyce, I do the same thing with my son's meds... I put them out, turn around, and ask him 3 times if he took them! Of course half the time he hasn't... I'm also always forgetting words and things, but I just blame it on my Mom, it's in my dna. I've had that forever, just worse with age, never mind our worries! I bought Ginkgo Biloba, but forget to take that half the time (or don't feel like it!).

Honestly, this is a fun thread, and I didn't think anything by your comments, and more importantly, Ann didn't either. So I wouldn't feel bad, and you better keep posting, or I'll send my boy scouts after you when they visit Alaska in July. I now wish I could go, just to visit you, and see that view off of your deck.

On another note, how old is your son? My 14 year old has Asperger's Syndrome, which is in the PDD realm as well. Which is why we have him on the medication! He's doing really well most of the time, and will be off to high school next year, which is a big transition...

Want to hear something funny about spiking the coffee/tea? A new friend was over last year, and I made tea... she asked if I had any vanilla extract, as she wanted to put it in her tea/hot chocolate (see I can't remember!). She then told me that her whole family loved it, and her little 6 year old had it in his hot chocolate as well! She didn't know it was like 60% alcohol! No wonder the boy liked it!
HelenL is offline  
Old 05-04-2011, 04:12 PM #1382 (permalink)
Ladyinn's Avatar
Member
 
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Ladyinn Ladyinn is offline
Member
Ladyinn's Avatar
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Default Re: Come For Tea

Girls, it is so good to know I am not alone with the confusion or forgetfulnes. Ann, your idea of Geritol might be the solution, although I doubt it.

I'd rather think Joyce is right and someone (maybe one of the boys who float in and out of here?) LOL spiked our teapot! giggle

Eyes runny is a better description - and it seems to occur at the slightest emotional change and when I am tired or frustrated. Or when it is a dismal day. I need sunshine. (That last should be shouted in capital letters.)

Ann, Sandy just brought a quilt she made using Ron's shirts for Sawyer's Christmas present. It uses cowboy material and embroidery of cowboys and horses surrounding a large cowboy with a hat, boots, holster, and red kerchief. She has real buttons on the cowboy shirt. The materials for the cowboy and the buttons are from Ron's shirts. The other side of the quilt is made from squares of his shirts. I'll try and get Tim to take a picture to post.

Oh, yeah, my eyes got runny when I saw it - Tim's eyes got runny when he had to write the check!
Ladyinn is offline  
Old 05-04-2011, 04:15 PM #1383 (permalink)
Ladyinn's Avatar
Member
 
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Ladyinn Ladyinn is offline
Member
Ladyinn's Avatar
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Default Re: Come For Tea

I just responded to Joyce and Ann's post on here - the ones about runny eyes and it went for moderation. Now I am really crying. *
Ladyinn is offline  
Old 05-04-2011, 04:15 PM #1384 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Diane, when are you leaving on your trip? My thoughts are with you for your Mom's internment ceremony, it will be good to see friends and relatives... I'm sure there will be some hard moments, but you know she's always with you.

I wish you good people to see, good weather, good food, NO stairs, and a great time... just remember the earplugs at the races... (and if the relatives are too annoying, you could always use them earlier in the trip as well I guess)
HelenL is offline  
Old 05-04-2011, 04:19 PM #1385 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

I know this is supposed to be our "fun" thread but I wanted to share some news: looks like I'm getting an appointment for the Dexpramipexole clinical trial, in the 3rd phase... Only 50/50 chance of getting the real thing, but thought it was worth it! Just finished the screening call.
HelenL is offline  
Old 05-04-2011, 04:30 PM #1386 (permalink)
Alyoop's Avatar
Very Helpful Member
 
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,835
Alyoop is on a distinguished road
Alyoop Alyoop is offline
Very Helpful Member
Alyoop's Avatar
Join Date: 2010
City: NZ
State: NZ
Country: NZ
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,835
Alyoop is on a distinguished road
Default Re: Come For Tea

Joyce. You need to realise that to come visit our little tea group, you need to be slightly on the crazy side. I dont think anyone ever takes exception to anything here, Hope not cause I am always a bit.............
I am always the laugh of the house. I have always gotten my words terribly scrambled. Its part of the type of epilepsy I have. I always mow the carpets, vaccum the lawns and allsorts of ridiculous things. I do get a bit anoyed sometimes with constantly being laughed at.

Talking of undies. I just got myself a new pair. Do you like them? when I finish my diet, I am going to take up sailing and sail across the tasman sea to visit Peter.

Gosh while taking a picture of my undies I missed about 5 posts

Wipe those teard Dianne. Your post will arrive and we shall make sure we see it.
Helen Congratulations. All the studies I do give the patient a chance to go open label after the initial study is completed as long as the drug has proved safe. The decision is not always made at the start. My MS study is now open label and each time the 2 years is up, the company does an amendment and the patients can stay on the drug. My MS study is also the same company as the study you are doing. They are great to work for and that who has employed me to do the Avonex training.
Best of luck. Fingers crossed no moderation
Attached Thumbnails
Come For Tea-biggestknickers2.jpg  
Alyoop is offline  
Old 05-04-2011, 04:54 PM #1387 (permalink)
Member
 
Join Date: 2010
City: somewhere
State: in the
Country: US
Diagnosed: 06/2011
Interest: Making the most out of life
Posts: 323
momofsixkids60 is on a distinguished road
momofsixkids60 momofsixkids60 is offline
Member
Join Date: 2010
City: somewhere
State: in the
Country: US
Diagnosed: 06/2011
Interest: Making the most out of life
Posts: 323
momofsixkids60 is on a distinguished road
Default Re: Come For Tea

Wow. I go aaway 4 a cuople of huors & look @ all the fum stuff gioing on!

Joyve, yuo said it 1st biut I also thouhgt of it (the butt wsahimg). When I jhad my 1st child y mohter shoewd me how to bnathje a baby. The 1st thimg sjhe did wsa wash my sonms fave amd said alwaus wash from fave down...yuo wouldm't wamt to use the same wsahcloth on yuor face as yuo did yuor bum wuold yuo? I didm't hjace to think abuot that 1.

Has amy 1 hread from Avril amd hoew her Mum is diong? If ur on Avril. my prayuers to boht of u!

Evrey1 in their cleaming mode got me srtated amd I an oberdone! Limdsay strated on the pamtry; which is the size of a smalk BR. It jhas talen her all day! I srtated outside sittimg sippimg tea! No I wsa sittime but puttimg dowm weed protecrtor amd labva rocks. I dom't think my arm is giong to forgive me afgter whjat I put it throuhg. I wamted to fimish paimtin g the huose; but dom't think I cuold do tjhat. Shuold jhabe fimisjhed it 2 yrs ago wjhem I srtated.

Maynbe I need a Tim or Phjil or just a new hjusband!

Enhjoy thje evemimg ladies, it's giong 2 b chillu here!

Kimnbrely
momofsixkids60 is offline  
Old 05-04-2011, 05:25 PM #1388 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Thanks Aly, I'm glad to know that they're pretty good to deal with... and hopefully I'll never fit into THOSE undies!

Kim, I also need a new husband to help me out around here! But, in the meantime, our friend Shawn has been doing 90% or more of the work around here, he was a "stray" that we took in about 5 years ago... has come and gone about 8 times now, but he's been back with us since last summer. The deal is, when he's working for me on projects, he doesn't have to pay any rent, and other than that, he pays a nominal amount. I'm thinking that when I buy (I typed in "if" first, I have to stay positive!) a new house, I should have him come and stay with me, he's the only one that does anything around here! My kids do some, but between school and activities, they're not around that much at times. Sounds like you have enough room, find some guy in AA to come and stay and work for board! Just make sure they're not gonna keep falling off the wagon.

I keep thinking of Avril and her Mom, and hope she knows that we're thinking of them...

Love to all, I'm off to a "Court of Honor" for the Boy Scouts of America!
HelenL is offline  
Old 05-04-2011, 05:47 PM #1389 (permalink)
AKmom's Avatar
Senior Member
 
Join Date: 2010
City: Wasilla
State: Alaska
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with UMND/PLS.
Posts: 631
AKmom is on a distinguished road
AKmom AKmom is offline
Senior Member
AKmom's Avatar
Join Date: 2010
City: Wasilla
State: Alaska
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with UMND/PLS.
Posts: 631
AKmom is on a distinguished road
Default Re: Come For Tea

well ladies I must admit that my earlier posts were momentarily a laps of insanity on my part. See? I should fit right in if that is a criterior of being here!

Helen, I did all the scouting thing for years. Was a den mother and scout leader for a spell with both my boys. My youngest son who is almost 23 yo now is apergers also although they called it officially when he was 14 as "High functioning autism". I battled for years to get a correct diagnosis with him because his original diagnosis that was made when he was 3 yo was "Severe ADHD". Which had I known at the time that is an absurd diagnosis for a 3 year old. He has been on the same meds since he was 16 and it has worked great. He still lives here at home and he does not want to move away at all. He has an aid who comes in daily to help keep him focused on his daily tasks, although the recent months he is showing signs of wanting much more to do without the aid. That is a good thing. He doesn't drive but he did finally pass the exam to get his permit. We will practice this summer. He says he is afraid of the other drivers because he cannot control them. I understand completely!

Aly I had to laugh/cry at your picture as it reminds me of the time that I did a load of "whites" and a pair of my undies somehow got wrapped around the aggitator and then during a spin cycle it really stretched and wrapped around the aggitator. So after I finally untaggled the mess...my undies were HUGE! My autistic son came in and saw me holding up the undies... he said "whoa" I said "Oh these are not mine! They are your dad's girlfriends undies!" Of coarse I had to backtrack fast with him because he takes everything as truth! But then he chided his dad for cheating on me with a fat woman! I had to laugh because I am not skinny! My poor hubby just laughed and told me they were not from his girlfriend but he bought them special for me! He slept on the couch that night!...(no not really.)

Kim I am trying to get cleaning done but its slow going. Yesterday it took me half a day to finish the bathroom sinks in my bathroom. The mirror was the hardest and my arms are still hurting for trying to clean it. Today I got two laundry loads going and I made some spegghetti O's for my hubbys lunch. He was like "thats for me?". They were my lil ones O's but I was too tired to make him sandwhiches. Opening a can with an electric can opener and microwaving is so much easier for me!
AKmom is offline  
Old 05-04-2011, 06:37 PM #1390 (permalink)
Jellycat's Avatar
Member
 
Join Date: 2010
City: Dublin
State: Dublin
Country: IRL
Interest: I lost a loved one to ALS/MND.
Posts: 443
Jellycat is on a distinguished road
Jellycat Jellycat is offline
Member
Jellycat's Avatar
Join Date: 2010
City: Dublin
State: Dublin
Country: IRL
Interest: I lost a loved one to ALS/MND.
Posts: 443
Jellycat is on a distinguished road
Default Re: Come For Tea

Thanks for the prayers, thoughts and good vibes coming our way. They make such a difference to us. The good news is that mum looks a good bit better today. I think she might beat the infection this time round. She's still on the iv antibiotics and syringe drivers but they are going to try to reinstate a small amount of feed tonight to see if she can keep it down.

I thought the undies hilarious. A little craziness is definitely a pre-requisite for having fun, and for this thread. Do keep posting Joyce. Glad to hear you got into the trial Helen. And on the face front, at the risk of you all laughing at my controlling ways, we run a system in our house of different colour flannels for bum and face, cause I just cannot guarantee that visiting carers do wash from face downwards! Dianne thinking of you as you inter your mom's remains - what an emotional time. The earplugs also sound like a must, though I hope you enjoy the whole atmosphere of the race. You will certainly be up close and personal. I know I've missed loads of you. I got so absorbed in reading that I forgot my replies each time I moved onto another post. And boy was there lots of reading. What luck. I do so enjoy hearing what you are all up to. love to all the girls and guys
Jellycat is offline  
Old 05-04-2011, 06:43 PM #1391 (permalink)
abbas child's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,184
abbas child is on a very distinguished road
abbas child abbas child is offline
Extremely Helpful Member
abbas child's Avatar
Join Date: 2008
City: Eastern Shore
State: Maryland
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,184
abbas child is on a very distinguished road
Default Re: Come For Tea

Helen, your friend Shawn is undoubtedly the safest way to get work finished around the house. It's pretty humorous, really. Don't change husbands. Part of my success, so to speak with Phil is that I very rarely try to change or interrupt whatever he's doing. If he's working in the garden and I know it, I pee in the diaper. Of course, when he comes in, I need 25 things, lol--but afterward, he's his own man.

Aly, love the underwear...Joyce, love your comment to your son about the "enlargement" by machine--I'm still laughing.....and in regard to sanity, insanity...saying off-beat things, I think for most of us, so much effort is required for everything we do..the way you move or walk, or in my case hold myself up--it takes some kind of concentration--may be subliminal, but I'll go with that excuse for being flaky and assume it's the new normal.

Aly, your fun silliness, which comes off as simply friendly and approachable is one of the first qualities that drew me to you.

Avril, I also lose posts and forget to reply; Hugs and love to all!
abbas child is offline  
Old 05-04-2011, 07:03 PM #1392 (permalink)
Ladyinn's Avatar
Member
 
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Ladyinn Ladyinn is offline
Member
Ladyinn's Avatar
Join Date: 2010
City: Custer
State: South Dakota
Country: US
Diagnosed: 11/2009
Interest: I have been diagnosed with ALS.
Posts: 402
Ladyinn is on a distinguished road
Default Re: Come For Tea

It is 2 hours and 45 minutes sionce my post went to moderation - and stil no sign of it --- must be in cyberspace!
Ladyinn is offline  
Old 05-04-2011, 07:19 PM #1393 (permalink)
BarryG's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,999
BarryG is on a distinguished road
BarryG BarryG is offline
Extremely Helpful Member
BarryG's Avatar
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,999
BarryG is on a distinguished road
Default Re: Come For Tea

Well I must be drinking the same spiked tea, I can cry at a hamburger commercial!
BarryG is offline  
Old 05-04-2011, 07:46 PM #1394 (permalink)
HelenL's Avatar
Very Helpful Member
 
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
HelenL HelenL is offline
Very Helpful Member
HelenL's Avatar
Join Date: 2010
City: Southborough
State: MA
Country: US
Interest: I have been diagnosed with ALS.
Posts: 1,611
HelenL is on a distinguished road
Default Re: Come For Tea

Try putting the vanilla extract in your tea, that will make you happy! Barry, I hope you get to eat all the burgers in the world when you are dreaming!

All this talk about the huge underwear made me think of the opposite: an episode of Seinfeld where George was swimming in cold water, somehow got seen naked, and complained it was "shrinkage" due to the cold! I bet this post goes to moderation!

Avril, so good to hear from you, hoping that your Mum continues to get stronger.

Joyce, my son was not diagnosed at age 3, but he was definitely pretty severe at that point... I'm glad to say that most people would just think of him as being a rude teenager at this point (which can cause other problems) rather than having Asperger's. He had a lot of Early Intervention, Speech Therapy, and then Special Ed through our schools, which all made a major difference. What I usually tell people is that he sees most things (not everything anymore) as black or white, right or wrong, etc. And that he had to learn behaviors that come naturally to all of us, like hugging (still won't let anyone else hug him), looking people in the eye when talking, not talking in a monotone, etc. He really reminds me of my father who was also gifted in math and science, I definitely think there is a genetic link to it.
HelenL is offline  
Old 05-04-2011, 09:06 PM #1395 (permalink)
Ms. Pie's Avatar
Very Helpful Member
 
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,801
Ms. Pie is on a distinguished road
Ms. Pie Ms. Pie is offline
Very Helpful Member
Ms. Pie's Avatar
Join Date: 2011
City: Colorado
State: CO
Country: US
Diagnosed: 10/2010
Interest: I have been diagnosed with ALS.
Posts: 1,801
Ms. Pie is on a distinguished road
Default Re: Come For Tea

Helen, that's great news! I hope you get the goods though. I remember that Seinfeld episode. Too funny!
Barry, Barry, Bo-Barry Bo Nanna Fanna Fo Ferry, Fee Fi Mo Airy...Barry! I just wanted to sing to you a little bit.
Joyce, I didn't see anything questionable or rude in any of your posts. Hmm...I'll have to re-read. I may have miss something good! LOL!
Ann, How did everything go today? Well, I hope! Thinking of you Lady.
Avril, I'm glad your Mom is doing better. We'll keep up the good wishes and prayers.
Kimberly, you crack me up! I love the story of how your Mother taught you how to bathe a baby. Too funny!
Aly! Love your lingerie picture! I cannot believe that you are anywhere near that much woman though.
Diane, what time did you initially add your post? Sometimes for me it takes awhile. I'll keep looking for it though. Was it a good one?

I'm headed for Texas tomorrow for a long weekend. I'll take lots of pictures. Fun, fun, fun!
Big hugs to all!
Marta
Ms. Pie is offline  
Closed Thread

Tags
back, work


Currently Active Users Viewing This Thread: 5 (0 members and 5 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 03:46 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016