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!
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!