Aug 2009 ALS clinic visit

[brendapals]

My dear friends,

I should be pistol-whipped for my 3 week forum vacation!:lol::lol::lol:

8/4/09 was my ALS clinic visit in Indy. I hadn't been since 2/09-oops- too many things going on in May- then wanted to wait for Medicare to kick in.

So they were all worried about my 23lb wt loss in 6 months! No worries, I think I wore heavier clothes in Feb! Really, I could lose another 40 and it wouldn't hurt-but! I always think of our dear beth, telling us to "keep your wt up"- so I still eat a lot.

They want me to have a GI consult with a dr closer to home-that's in Sept. They said better to have the peg while I can still breathe good.

My breathing- the one where you have to breathe IN- I was at 65%- down from 90%. The other one was 74%, down from 78%. I'm happy to report that I only have about 10 menthol cigarettes a week-about time to give them up I suppose...

They loaned me a rollator-which has helped with my constant struggle of pulling weeds!

Not driving as much,but still can-but my speech is so crappy-I'd rather let hubby drive! Notice I said let...

I got a cortisone shot in my right shoulder-ouch-for what they think is a torn rotator cuff, supposed to start torture,uhm, I mean therapy next week.

Our oldest son, Evan, the pole vaulter, leaves for college in 9 days, and I'm already grieving! He "gets" my speech better than anyone- I'm praying the other 2, or hubby,
will pick up the slack when he leaves.

Gearing up for a huge rummage sale this weekend-I've rec'd ONE ssd check-and of course it's not enough-but hey, I'm still fighting this mess-just wanted to give a quick update, I'll be back soon tho'-I think I'm about to graduate my member status!

Never give up,
Never let up,
Never lose faith,
-brenda

 

[GlenBrittle]

Hey Brenda,

Pistol whipped ? No one should ever be pistol whipped. Now, if you can get your hubby some black leather and a cat-o-nine-tails ...

If they are talking PEG , go for it. I am , for same reasons. Do it while I am still healthy enough to heal up quickly.

Glen

 

[brendapals]

thanks glen-

I think my 15 yr old wants to be a physical therapist/sports medicine guy- I'm sure he can learn all about the peg-
good luck with yours also!
take good care
brenda

 

[BarryG]

Brenda, glad that you're back on after your vacation. You mentioned that your son Evan is going away to college and that he can understand you better than anyone else and it is funny but that is exactly my situation. Our son, who will be 21 in a few weeks, understands me better than anyone else and he will be going back to university in September. I use my talkers a lot now and I guess I will be using them even more when he goes away.

Like you I am letting other people drive more now but it is really hard because it is SO hard to be a backseat driver when nobody can understand you

I am glad that you are looking at the PEG (People Eating Good) cause it really helps.

Barry

 

[Zaphoon]

Brenda,

You are so close to that cherished status of, "Very Helpful Member"!

In my opinion, you've already reached that status a long time ago!

Zaphoon

 

[MtPockets]

Brenda, glad to see you back. There ought to be a song making memories,,,,,,,,,,,
Tell Evan to be careful Pole Vaulting. That is what I did for 4 years in high school back in the 60's. Landed on my head one time too many, I suspect. I had a full scholarship to college as a pole vaulter, but threw it away to join the Air Force. I was in such a hurry to get away from home.

 

[paleshia]

fellow hoosier

Hi Brenda!

I read you go to the als clinic in Indy. I meet Dr. Pascuzzi tomorrow at 8am. He must be some doc to meet me on a Saturday. Or I am just special. I am newly diagnosed and am still in the what do we do now mode, or maybe they're wrong mode, or who knows what else. I would love to chat some time,

jen

 

[BethU]

Hey, Brenda ... so glad to see you back! I was beginning to worry that we hadn't heard from you for a while.

Keep carrying the message!

 

[rose]

Brenda,

Thanks for checking in Yeah, you're going to miss your son, but not as bad as when the youngest one leaves though, and you know you're going to still be around for that departure too!

Sounds like you had a pretty good clinic visit. Good luck with the rummage sale, I'm sure you're in the thick of it even as I type this.

Remember, I had a torn rotator cuff last fall, (?) I think from fall gardening, that pulling the ivy out of the rose planters did it to my shoulder) The cortisone shot was enough, never went for the therapy. Now, 8+ months later, I've got atrophy in the right shoulder blade, so in retrospect realize weakness present then could have predisposed me to the tear, as lessened strength in any of the 4 muscles that form the cuff causes unevenness and leaves a person open to easy injury. IMHO Let those weeds just go! (I'm trying to teach Ernie dog "selective" garden digging )... I can't lay on my side up against Don at night for long, because its too hard on my shoulder. I told him I probably just needed to lay more on top of him, (bipap hose and all LOL) and he said maybe we should just change bed sleep sides....so far all I've done about it is complain and thrash around at night though. 8)

 

[Zaphoon]

My neuro believes PLS predisposed me to bilateral frozen shoulder syndrome.

Zaphoon

 

[MtPockets]

The rest of the story?

I think this would have been a good part for the story line. Rose thrashing Don in bed, at night, :roll: in his sleep?

Brenda,
I can't lay on my side up against Don at night for long, because its too hard on my shoulder. I told him I probably just needed to lay more on top of him, (bipap hose and all LOL) and he said maybe we should just change bed sleep sides....so far all I've done about it is complain and thrash around at night though. 8)

 

[rose]

Capt. Al,

...This occurred to me too ~ after too much time had elapsed to go back in and adjust my wording just a touch LOL.

I'm sure the more "gifted" forum writers will find inspiration here.

 

[brendapals]

well, more info....

9/14/09 is my consult with the GI about a feeding tube. Hubby bought me some ensure the other day, but I haven't tried that yet. Oreos and milk are being good to me this week!

rose-the rummage sale wore me out- but...got rid of a lot of junk!

I have lots of new pics of our boys to put on here-
take care everyone!
be back soon,
brenda

 

[handinhand]

Hi Brenda, I feel left out? I guess I need to think seriously about the wonderful peg..... I am waiting to hear a few more remarks on how it all goes with it? Please keep me posted? Linda