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rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,925
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Hello All,

I have missed posting much, and will be back more eventually. I'm still having computer woes, my son says its a memory problem and is going to nuke my hard drive and give it a fresh start; maybe as soon as this weekend (high hopes!)

I had my clinic visit last Monday, and go to my neuro this coming Monday, so, as for an actual update for me, I'll have a better picture later on.

Some of the interesting management ideas that were presented to me at the clinic I wanted to share with you guys.

.... swallowing....

In the last 6 weeks or so, I'd gotten to where I had almost an aversion to swallowing. I didn't want to eat, I couldn't seem to get in much water, etc. I'd wake up in the morning and not even need to visit the bathroom.... In the past I'd habitually consumed a lot of water each day. As a flight attendant I'd gotten into the practice of drinking a minimum of a 1.5 liter bottle of spring water every day, (supplied by my employer during trips) in addition to any other beverages. So I did not understand why I was having trouble getting the needed intake. I'm not talking about problems with aspiration, just needed hydration.


Monday, two different specialists stressed that water is one of the hardest things for us to swallow, and that I should try drinking carbonated flavored water. At first I thought they were just assuming I was not a water drinker, and the added flavor would make me "like" it, but then I got that the point was the carbonation. The fizz seems to give the muscles involved in swallowing something to sense, and move down. It has been very helpful, I've been able to up my intake, maybe not dramatically, but definitely an increase. I've still got to have another swallow study done to show where I'm at as far as danger for aspiration, but in the meanwhile, as long as I do the chin tuck, I'm allowed to drink beverages without thickening. ... so, for those of you that are having trouble consuming enough water for hydration, try something fizzy, it really does seem to help.


I was urged to start thinking about a PEG, that I did not need one yet, but a decision was in my near future. It was important that I not lose more weight. The clinic director said that they would not order one for me if I waited too late in my overall progression. They will not do it once the benefit is outweighed by too much deterioration.

Next, my curling fingers. In a way it is funny, on the forum there are some (mostly those who don't have a diagnosis yet) who are consumed with trying to measure their progression and if all is normal. I did not even notice that my fingers on my right hand would not straighten out all of the way. I obviously, could use to have at least a smidgen more interest in monitoring things than I have had, LOL. Anyway, we discussed the splints to wear at night, but I said I did not know how many more "accessories" I could put up with wearing, and still be able to get any sleep. So, the OT said that they preferred to have the PALS do regular stretches during the day instead of the hand splints or oval eights. That if I grasp my fingers at the tips, and stretch them back toward my wrists, at least once every hour to 1.5 hours during my waking hours, that it would be much more effective than wearing the splints at night. That the important thing was to form the habit of doing it regularly, and to do the stretching slowly. (doing a quick bend back serves no purpose and will not help). .... also sitting on the hands with fingers outstretched helps.

Now, for completely OT news, there is a new love in my life. A schnoodle named Ernie (and no, Barry, the cat is not Bert, that would be funny though). His full name is Ernest Hemingway, but I'm pretty sure he thinks his name is "Ernie No"

Ernie :: forforumavatar.jpg picture by dstormewr - Photobucket


Click to enlarge. You should be able to view the album. If the album does not come up, can someone comment so I can try to fix it?
More pictures when I get a camera that works... I think I've got an technological black hole in my house right now!
 
Rose,

You continue to be a pillar of strength to all of us here.
You are as beautiful on the inside as you are on the out!

Mare
 
Cute pooch and you're still not bad yourself Rose.

AL.
 
Rose, it is sooooo good to hear from you again. I have missed your posts.


Lydia
 
Rose - the grace with which you handle all this is a model for us all.
Thank you
Dan
 
Rose, I am so glad you're back and I hope that you can get your computer back in working order. I spent two days last week ridding my son's laptop of a nasty trojan virus and eventually had to dazzle him and his friends with my knowledge of DOS.

I am glad that you can drink fizzy things, I might try some ginger ale outside where I can make a mess. If that works I'll drink nothing but champagne! Seriously though if you have an opportunity to get a peg do it. I know that for me it was "one more step" in admitting that this is actually, really happening to me but once I got my head around the idea it wasn't so bad and it has allowed me to survive.

Thanks for the finger stretching tips, my right hand doesn't bend and stretch as good as my left and the little finger wants to go it's own direction from the others. I think that it is trying to do the Vulcan "live long and prosper" salute but it has no support from the other fingers. Mutiny on the Barry, a classic in the making!

A schnoodle? Isn't that the same as Thelma's dog Chico? I think that Ernie and Chico both have the same "I can see you but you can't see me" thing going on with their eyes as my long haired son. A cute dog anyway, and he must be related to my dog Lucy No and cat Charlie No. :razz:
 
Rose, It so great to hear from you.
Ernie is so-so cute; I have a poochon (mix of bichon and poodle) and he is my best buddy.
cookie
 
Rose,

You never cease to amaze me! It is so great to have you back and thanks for the update. You continue to inspire us all. I am going to suggest to my Dad that he try something fizzy but I am afraid he might be past that point. He can only drink "thickened" juices now.

Yes Barry, Ernie is indeed the same "breed" as my Chico. The Schnoodle is a very special kind of dog. Here is an excerpt from Wiki...

"The Schnoodle mixes the intellect of the Poodle with the companionship and devotion of the Schnauzer. Schnoodles are very astute... This intelligence ... coupled with the terrier desire to please the owner, makes most Schnoodles easily trainable. The vocabulary of a Schnoodle is quite impressive, considering they are able to pick up phrases, such as "go get your toy" with ease. Their high intelligence can also assist in participating in dog sports such as agility and obedience."

The puppy phase is, of course, a bit of a challenge. Rose, if Ernie gets very bratty and is doing something you really don't want him to do, a better way to make him stop immediately is to shake a little can or tin with pennies in it in his direction. Just give it one brisk shake and the metallic sound of pennies in a tin will just stop him dead in his tracks. It's magic. He will do anything to avoid the can. All I have to say to Chico is "I'm getting the can" and he stops what he's doing and sits down.

Good luck and if you ever need any training tips, I am the Canadian Dog Whisperer... or so I have been told. :)
 
Rose - sorry you are having computer problems. I have missed your posts. Hope your get your computer issues resolved fast.

My Dad had trouble with hydration even with the tube. When in the ALS clinic his blood pressure dropped to 65 over 45 and he made the therapists extremely nervous. They laid him down and propped his feet up and paged the neuro. He came over to see Dad and his first question was how much water he had taken in. Dad obviously did not say enough so the doc had a therapist grab some water. We poured 8 ounces into Dad's tube and within 20 minutes Dad's blood pressure was back to normal. The Doc said deydration was a problem for PALS with tubes (assume water for flushing with tube feeds is adequate) and without tubes (struggling/tiring trying to swallow). I am glad the chin tuck and fizzy water are helping you.

Ernie is adorable!


Thelma, a.k.a. Canadian Dog Whisperer, I love the pennies in a can idea. We have a puppy that is driving us bonkers with all her energy. I would love to get to the point where we just have to say "I am getting the can." My daughter thinks it is a great idea and is off to find a can!
 
I wonder if "I'm getting the can" works on 16 year old boys....?:p

Thelma that just made me laugh-

Lydia
 
Rose,

It is always good to hear from you but I just have to say the dog is, well, a bit on the homely side of the fence. Oh, I know he is a sweet schnoodle and all but man, he is some kind of woofer. He reminds me of a girlfriend I once had, sweet to the bone but her ugly went just as far!

I'm sorry...

I'l go home now.

PZ
 
PZ, all I can say is that I'm glad I'm not in your shoes right about now. Ahem......some things are better off left unsaid! When Rose comes back on line you had better cover your ears! (so to speak)
 
Ok PZ, first no free ice cream and now ugly too! Your taste in girlfriends is beginning to come under suspicion! And I think that you can forget about calling Rose your "girlfriend" now! :razz:
 
PZ?! What the? Are you mad? Ernie is GORGEOUS and incredibly handsome... he looks a lot like my Chico... so you are skating on thin ice here. You know I love you tons PZ but calling Rose's pooch ugly, well, I hope she comes on line soon and sets you straight. Ugly? Geez, I hope your eyesight isn't messed up.

Lydia, let us know how "Getting the can" works on unruly teenage boys. (LOL)

DgtofTNfan, keep us posted on your hyper puppy's progress too... I'd love to see a picture. :)
 
Thelma,

Remember the phrases: "If you do it too much you will go blind?" or "Can I do it until I need glasses?"

I think PZ has done it too much !

Then again, maybe PZ wants to get smacked around by Rose .

However this pans out , WE WANT PICTURES ! {{evil grin}}

Glen
 
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