New? Introduce Yourself - Say Hello

[paleshia]

welcome paul, good to meet you, hope you find help and hope here to survive this journey. boy you are a busy guy!

 

[MickMac]

I am also a new member. This site is very special indeed! Thanks for being here for us! I'm awaiting my neurology consult because of a poor EMG/NCV result. Very nervous to say the least...

 

[peter57]

Welcome to all the new members,

MickMac, Paul, Marcia Mary, and Amatop, hope I havent missed ay one if so I apologise.

I am glad you found the site, not glad that you had to come searching for it though, like all of us, wish we didnt have to be here.

But we are so we are making the best of it, with tips, ideas, a place to vent and humour

cheers
Peter

 

[Tom's Support]

Hello everyone, Juliette here.
Tom is in the lucky group, struggling for 9 years now. He retired just this summer past, but as I guessed would happen, once the job was gone his deterioration seems to have sped up. Weight loss is his greatest enemy, next to the relentless cough, and inability to swallow, leg cramps in the night... but we are both very fortunate to have a group of friends that are MAKING Tom enjoy what retirement he will get. (He's 52) He still gets to go on fishing trips to get away from the house (the kids and I get our break that way too).

I am going to have lots of questions and am so very grateful to be able to connect with other PAL supporters, but my guilt feelings right now are my greatest enemy. Guilt for being healthy, guilt for resentment, you know the lot.

Tom has always been an unhappy man. ALS has not helped and he seems to lash out at us even more these days. I know he is angry. I am angry too. Does anyone else live with Mr. Cranky-pants? I keep telling the kids that he is mean to keep them from seeing what is happening to him and because he is frustrated with his dependence. I wish he could see that they need him right now and he needs them just as much, so much time is being wasted with hurt feelings.

 

[Twinsmom]

Hello to everyone new to the forum! You will find an incredible group of people here.

Tom's Support, I tease my husband that he's Mr. 1/2 Empty...he doesn't lash out, but withdraws, which has just become magnified since we began this journey. I have had a few conversations with my husband-what I lovingly refer to as "A come to Jesus chat"...for your husband that sounds like it would be basically calling him on his ugly and telling him what his words and behavior are doing to those he loves. Having this awful disease does not give one the right or permission hurt those who love him, just because they are in the line of fire (meaning in his presence) Hang in there. Not only do you have to take care of Mr. Cranky-pants, but be a shield and protect your children as much as you can when necessary.

Peace,
Melody

 

[CAHPAH]

Hello everyone. I am new to this sight. I decided to join since you all seem like a caring group of people. My wife was diagnosed in Sept 07. She now has no use of her hands or arms and FVC of about 30%. She is an amazing woman who continues to teach her elementary class of 25 kids with the help of a fulltime aid. She really wants to finish out the school year but this just keeps getting harder. I have two in their late teens early twenties and the three of us try our best to take care of our PALS. Any way, I just wanted to introduce myself

Jim

 

[BarryG]

Welcome to the forum Jim! Sorry about your wife and I hope she gets to finish the school year, thanks for helping her.

 

[Tom's Support]

Thank you, Melodie it is ?good? to hear that my Tom isn't the only one who has trouble. He was mean before ALS and now his mean is worse. He has had a pretty tough life but sympathy can't cover the rest of our pain all the time. Myrna at Sunnybrook said something like "ALS patients all have one thing in common, they are the nicest people" and I remember at the time thinking 'good, that means Tom doesn't have ALS!'
Now I am looking into things like FTD. He also says he is dizzy all the time and he is plagued with an extremely itchy back. Man, sometimes I think he is Job, but without the patience.

Hey Jim, you and your wife are lucky for the FIGHT in her character. Tell her that she has a bunch of cheerleaders here and we are all rooting for her to finish out the year. Tom fought a long time too -- we all encouraged him to 'retire' but he stuck it out and it gave him strength to be with his workin' buddies. What a blessing it is to have a job where everyone can understand and be encouraging.

 

[CAHPAH]

Thanks guys for the welcome.

Tom's Support: My wife also suffers from an extremely ichy back as well as scalp. The only thing I could figure is the weight an muscle loss causing the skin to be looser then normal. We scratch her twice a day, once in the morning and before she goes to bed and add lots of lotion.

 

[MtPockets]

Welcome to all the new members. Glad you found the Forum. Be patient with some of the members as their typing skills are maybe down to one finger or the Dynavox. They still will do their best to answer your questions.

 

[Al]

Hi Juliette. I'm just over in Orangeville and go to Sunnybrook as well. Is Tom in a wheelchair? I find my back gets itchy down low where it touches the back of the chair. He could be having FTD issues or just be feeling frustrated and helpless. When he was working he still had some independence. I'm pretty sure he's feeling bad about that. With 9 years in though you'd think he'd be over all the different emotions.
Hope we can be of some help.

AL.

 

[Tom's Support]

So far you folks have ALL made me feel a lot more at ease with this. I am going to be so happy to try to relieve Tom's unspoken fears. 1. The coughing is more likely due to more saliva/phlegm rather than a virus, and really glad to explain the back itch! He was telling me I don't clean enough because we have bed bugs! (oh man!) As far as his emotions go, he is really untried with them. I think he was discouraged from having any as a child (be seen not heard) and learned early to keep everyone out. Denial has been his greatest asset, but because it covered so much time I think he is just now getting into angry. Tom has been so lucky to have his hands and arms go first. It then moved bulbar and is now making an appearance in his legs. The love of his life is walking and he still does it, but falling is becoming an issue. No wheelchair yet, but when it comes I am afraid of his total despair (and ours)
Big concern of mine, Is anyone else (PALS) dizzy? Tom complains of this a lot.

 

[sadiemae]

I just ordered a supply of backscratchers for my PALS. He itches all over on his back, and I never can get the right spot. Scalp itches too, so we bought Selsum Blue shampoo, but still the itches. HUGS Lori

 

[Zaphoon]

Greetings to all of you new members! I'm sorry for the reasons that brought you here but glad you found this wonderful forum of family and friends.

 

[joelc]

I just ordered a supply of backscratchers for my PALS. He itches all over on his back, and I never can get the right spot. Scalp itches too, so we bought Selsum Blue shampoo, but still the itches. HUGS Lori

I take Neurotin and use Aveno cream. It helps a lot.