Limbo

[HelenL]

There should be a character limit for first time posters... what a waste of space that that post was. And sort of like a hit and run, where they post their crap, and then don't come back.

Red Triangle it is!

 

[Fiancee]

Thank you Chase Corin,

There is a degree of insecurity in all of us, but it may be more in this case. I thought like you did, and I think this is just a phase that we both have to deal with. Once we passed this, we are growing stronger as a couple, and with help of his family and close friends we are more united than ever. He is very lovable, and we won't live him alone.

 

[Fiancee]

Dear Helen,

I didn't understand your last posting. Would you be willing to clarify it?

 

[brooksea]

She meant the that for the person that hijacked your thread with the long diatribe! Sometimes we get some weird ones...

If you see an inappropriate post you can click on the red triangle on the bottom left next to your "light" that is green for online and blue for offline.

 

[HelenL]

Thanks Brooksea, that indeed is what I meant... it's insulting to the person who originally posts a serious question to have someone spam it with cut and pasted stuff that doesn't apply. And doesn't answer the question!

 

[mrsbeanfarmer]

not sure why this person was banned---beanfarmer. He usually cuts and pastes because it is much easier for him. His PLS/similar to ALS has progressively worsened. It takes him about half an hour to post one sentence. Over the years he has written some helpful things and I am sure he meant it for good. If anything, he understands the difficulties of not being able to have the same life he had before PLS. He uses these experiences to help others cope. My husband--the beanfarmer does not have much use of his body, but his mind is in tact. So if he did offend anyone, I don't think he meant to. He cannot verbally say he loves me, but his actions still show it and he can still type it. He sent me a text message yesterday to remind me that one of the reasons he loves me, is because I love him. In relationships, forgiveness of ones shortcomings is necessary to move forward and deal w/life's problems that come up, especially w/loved ones that have disabilities. My daughter is also autistic, so that creates another support group in itself. I hope that you will not keep the beanfarmer banned from your website, as I am sure he has much insight on what it is like to live w/PLS. He was diagnosed in 94, the same year our daughter was diagnosed w/autism and I suffered a miscarriage.

 

[edwards5257]

Sad he was banned, part of this I guess.

 

[HelenL]

Hi Mrs Beanfarmer, sorry he was banned, but much of his posting wasn't conducive to the conversation and certainly didn't help the original poster. H should start his own thread if wanted to post that. I hope you're both doing well, as is your daughter. One of my sons was diagnosed with Aspergers when he was very young, so I've been there in a milder form. I hope you both come back and join in with the conversation.

 

[scotslassie]

Don't hijack someone's post to draw attention to yourself. Start a new thread of your own and it will be answered accordingly. How do we know that Mrsbeanfarmer isn't the original poster? None of this is helping Fiancee. Mr/Mrs Beanfarmer, please start your own thread/s and put your own point/s across without intruding on another's request for help. Some of the people on this forum have enough difficulty responding to genuine questions without the added complications of other people jumping in completely off topic. This post is about Fiancee, no-one else. Let us not digress.

 

[Toto's Dorothy]

Lassie,

Kudo's to you. I thought the exact same thing.

Fiancee,

PLEASE come back and post again.

 

[Fiancee]

Thank you for your support.

We are doing much better now, fighting this disease in every possible aspect. First, he stopped using the computer for entertainment; instead, we cleaned his garage and assembled a ping pong table, and other table games. Second, he is very smart and he knows that he needs to keep his mind busy, he is not reading as he use to read before, but he watches serious TV programs like law in order, the mentalists, closer, and other similar. The psychologist said that those programs stimulate his mind. Third, I grow more as a woman and stopped acting as a little girl, getting sometime for myself to relax, and being more conscious about his feelings and needs.

 

[themommy]

Fiancee,
First understand one thing. This is the hardest thing in the world to endure. The disease hurts everyone it touches. It is relentless. Just when you think you understand - it throws something else at you. Its just the way it is....So hold onto your hat - life is in transition for you. Secondly - get into the mode of acceptance. New stuff is gonna pop up all the time...And unfortunately - you cannot change it. It totally sucks. Lastly remember that there are some of the kindest, most wonderful people in the entire world typing words of great comfort to you. Some of the people are enduring horrific pain and heartbreak...AND yet they will bless you with their first hand knowledge of your journey to come...
So my friend....hold on it is indeed a wild ride...

 

[panguinjen]

Fiancée,

Glad you are taking care of yourself! It is one of the hardest things to do... themommy is so right in her post, every day brings a new challenge! Stay with us, this is the best group of people on this journey!

Jen

 

[mrsbeanfarmer]

Fiancee, glad you are getting some help you need and taking some time for yourself. It is important to find time to spend w/others you can talk to and do things with. Sometimes a cup of coffee with a friend can be very uplifting. Also, it sounds like your fiance is trying to do things that will also show you the care and love you need by his willingness to give certain things up and try different things. It is very hard for the people w/ALS/or PLS when all they have is their minds to occupy them. You will also need to find things that interest you--this support group is a good idea of one thing to do. Music is a good outlet as well. Even though your friend may not be able to sing, he can still sing in his head! It is a good form of relaxation and renewal, not only for him--but for you as well. Best to you../a caregiver for my husband who has had PLS for 18 plus years.

 

[Barbie]

glad to hear you are trying new things--he can also listen to books on his computer and you can listen too (like a book club!) we use to enjoy going to the movies each week, now we download old tv series and that is a lot of fun (loved the sopranos, now watching the west wing). my husband also uses the computer for entertainment, but his is learning new programs and he loves TED lectures.

remember to try to find time for you and your interests too. youdon't want to become lost.

all my best,