new awaiting diagnosis

[CindyM]

Paula-Jane, this is National Caregivers week in the US. Give yourself a big pat on the back. I am sure your Mom appreciates what you do, even if she is too sick to acknowledge it. Cindy

 

[Al]

And we appreciate your sharing with us too, Paula.
AL.

 

[Meg1]

I've read this thread with interest.. wrote out several responses.. (all of which I deleted) and then just sat and thought. I appreciate all points of view. I think we benefit from hearing different ideas and points and advice from all walks of life. I have been "put in my place" by Meg1 several times and as a result.. I rarely take part in the forum. I don't have ALS.. but, I have been nursing my Mum and watching her die every day. To say I don't have something worthy to contribute to this forum simply because I do not have ALS.. is wrong... I know sooooooo much about ALS and I have been to every doctors appointment and I have watched every change and every devastating thing about this disease. People are people and some people are empathetic and compassionate, and some people are only too happy to point out our short comings and be negative. We can certainly take on a dose of reality just as much as we can a dose of humanity. My life will never be the same because I have loved someone with ALS, do not forget about the family left to go on without their loved ones. I will never look at life the same way again. This disease effects and affects. My Mum is dying... quickly, and I will never be the same again. Meg1.. although you are very proficient at the technical stuff, and it is appreciated.. perhaps, you can learn how to get your point across without seeming to sound so angry and condescending.

My posts speak for themselves but I do hate it when they are mischaracterized. For the record, I have had exactly one interaction with paula-jane (not "several") and it was cordial, not "angry and condescending." Here it is in its entirety:

Quote:
Originally Posted by paula-jane
I know that there are many people on here who have experienced a positive diagnosis for ALS and it has turned out to be something else.. and of course the opposite happens as well.
.
Reply from Meg1:
It's pretty difficult to get an ALS diagnosis but I know that a few people have been diagnosed in error--that's why I always advise visitors here to be seen at an ALS center. But I certainly don't think there are "many people" on this board who received an incorrect ALS diagnosis. Unfortunately--or perhaps not--the opposite happens all the time.<end quote>

 

[CindyM]

I do not get frustrated with [Mom], I do not get angry and I do not consider her a burden. We love her and it is as simple as that. I grieve terribly and I celebrate often.

Paula- Spoken like a loving and caring daughter that you oviously are. Your Mom must have been a great lady to raise such a wonderful woman.

To all our PALS and CALS- take a minute and do something special for yourselves. Life is short and at the end of the day, all any of us really have is each other. Regards, Cindy

 

[Frizzel]

About Paula-Jane's mum

grieve terribly and celebrate often

That could be the title of a care giver's manual. That stuck a cord in me so deep I could hardly move away from staring at the screen when I read it. Thank you for sharing about your mum with us. Very personal and yet it soothes my soul to know there are caregivers like you out there.

I personally need to be reminded of what a sacrifice my husband makes for me every day. I also know I would do the same for him.

AMEN Cindy, caregivers need to take time for themselves, too.

Meg, we all especially in writing know that our words can be misinterpreted because we are reading and aren't hearing the inflection of how the words are being spoken. ALso, at least speaking for myself, if I'm in a certain frame of mind I hear things out of context. In all our imperfections my hope is we trust that we all will cheer each other on when we're down and rebuild the parts of the bridge in this forum that get a little worn.

CHeers to spring and the canvas of color it brings to our lives. Frizzel

 

[Al]

OK LETS LET SLEEPING DOGS LIE. As far as I am concerned this petty bickering has to stop. Everyone has made their point. Now let's get back to the business of support. I don't usually get mad but this is really starting to T me off. Play nice or get out of the sandbox kids.
AL.

 

[DavidGL]

To all,

When we speak to one another in person, our eyes and our smiles complete the communication picture. Words lacking emotional content may be accepted as helpful when the eyes are twinkling and lips are curled into a knowing smile. We don't have that add-on when offering our thoughts in writing. May I suggest, when we are reading the written word that we all take a little time to imagine a friendly face while reading them. Then parse the words carefully. Read it three or four times to see if any unkindness felt there evaporates. The first order of charity is to desire to find all good in our neighbor's words and acts. If we want to find it, we will.

Of course there are exceptions. If someone, for example, were to say "you, sir, are a cretin!", we may rightfully feel offended. Even then, things will go better if the words are just ignored--or, perhaps, replied to with a sphere of levity. Of course, in the physical world, we may best respond with a solid and resounding physical strike.

Yes, I do jest.

Meg1 is just forward. She is expressing an informed opinion and uses her phrasing clinically. It's her style. Adjust or ignore. OTOH--maybe Meg1 wants to try and soften her approach since it does seem to annoy some people. I shrug.

DavidGL

 

[quadbliss]

I find the face icons helpful in expressing the tone intended in my posts. I learned early on, they are not just a toy, but a useful tool.:-D

Mike

 

[CindyM]

I've been blessed with people in my life that want to support me and know how to do it. Their love and intentions fill me with gratiude. From recieving this kind of support, I learned how to offer it in return.

The best we can do is follow the advice that Mike and David and Frizzel and Al have provided, and hope that people will feel welcome and safe from the stress that coping with a debilitating disease brings into the lives of ourselves and our loved ones. JMO. Cindy

 

[Carol Deboer]

Hi Guys,

I have read this thread with interest. Lots of emotions here. Having moderated this site for the past couple of years, and being one of this forums first members, I am concerned that this is a complete battle of wits of who knows more than the other. I am in 100% agreement with Al. Lets move on, enjoy each others knowledge, knowing that we are all in different stages of this ALS THING. Having lived it beginning to end, I wish that you all keep an open mind and just let the BS go. Support each other, and make your words sweet, you may have to eat them later.

Blessings to all,

STAY STRONG ....... Carol D.

 

[Jellyfish]

I have a lot of scary symptoms. Most horrible are the ones involving my throat muscles, slow swallowing (barium xray thingy) and weak tongue and muscles under my tongue. Lump in throat feeling, along with muscles that twitch a little but are VERY tired. Can't shop for groceries, drive using the clutch. Not much weakness in hands but in upper arms and upper legs. The weak tongue/throat thing happened 3 months ago and lasted a few weeks, then went away only to return 3 months later. Speach is slurred a bit.
Seeing 2 Neuros and waiting. Even with insurance, money is tight so I only could afford the BRAIN MRI which was normal. Watched little squares on a TV and that was normal too. Still waiting for the next Nuero appointment in a few weeks where tests have been normal. No EMG yet and scared to do it. I already know it's important though. Just Hoping its MS or MG and waiting. Scared to post and be attacked for being scared that I might have ALS by the people who already have it and think the undiagnosed people are being big babies. But this is the only place I can think of to talk about my fears. I can't expect the neighbors or church members to know anything about it and my life is already completely changed so far. After 32 years of dog shows and dog classes, I just sit and watch unable to do the walking.
I have no idea how to keep up with the posts I'm an über newby!

 

[Moonmark]

Hi Jellyfish--

I am sorry that you are having these problems and have to go through all these tests. I am in the same boat, but with no diagnosis yet, and one thing I am holding on to with great hope: a clean EMG.

I just wanted to say I don't think you should be afraid to post here. Everyone has been extremely generous, kind, understanding, and helpful to me and many others. I have never felt attacked or been made to feel like a "baby" for writing about my symptoms and fears. The people with ALS all started out with troubling symptoms themselves and many had to wait a long time for a diagnosis, so they know how it feels to be worried and scared. If people have shown impatience here, I would say it has only been towards folks who have symptoms that do not generally point to ALS and who have also been told more than once by neurologists that they do not have the disease.

also-- do not fear the EMG. I did not find it painful at all, only mildly uncomfortable.

Good luck--

Sandra

 

[Al]

Hey, Jellyfish. We're not all mean and scary. Welcome. I think you need an EMG & NCV test to really find out what's going on. Hope your 2 neuro's have seen a lot of MND's so they'll know what they are looking at. Some don't.

AL.

 

[GlenBrittle]

Hey, Jellyfish. We're not all mean and scary. Welcome. I think you need an EMG & NCV test to really find out what's going on. Hope your 2 neuro's have seen a lot of MND's so they'll know what they are looking at. Some don't.

AL.

But , I think AL will bite if you ask nicely.

To keep up with the posts , start fresh . Click on "Quick LINKS" and select "Mark Forums Read". After that , "new posts" will keep you up to date.

Glen

 

[Connie]

It would be really nice if we would be more tolerant with each other. All of our lives are difficult and stressful as manifested by the fact that we are here with each other trying to get support and learn from each other.

Ridicule is unnecessary and very hurtful. We all have bad days and need to try to keep that in mind when we read posts that may be inflammatory. Assaults on each other are totally inappropriate and hurtful. The golden rule is in order here as well as every where else.