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olly

Extremely helpful member
Joined
Jan 10, 2008
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2,743
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PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
no,not intake (too skinny for that)but what i eat.
slowley my swallowing is getting worse and some foods are getting just plain too procarious (sp) to eat.
tonight while eating my evening meal (lasagne,jacket potato and salad)the salad kept getting stuck and i had to keep hacking so i would not choke on it.

my list of moderated foods so far are......salad,spagetti,biscuits or stodgy stuff.
if it gets stuck at the top of the throat its a case of trying to dislodge it.........further down which thankfully is not ofton then its a full on choking fit.

i'm not a doctor but it feels to me like the muscles are not reacting quick enough to get food down.
i have had several years now were my chewing muscles have been effected.....yes,i could try to chew food up more but my jaw and lower facial muscles would give out half way through a meal.

i have been putting off going to see about it as it will mean more tests,just waiting till it gets to a more serious level.......for now its managable.
rose gave me a great tip of having some yogurt handy to help when food gets stuck so will give that a try.
dont want to alarm fellow pls'ers,alot here dont have bulbar involvement yet.........its taken about 5yrs from bulbar onset to get to this point.

so as i have said its now time to draw up a list of no no foods.
 
So sorry Olly, that you are having this problem. Please be careful while eating and never eat alone. Maybe Doc's can help you out, you should go now before there is an emergency. Be careful
 
I have had to give up salads and fetecini noodles. I can still do spagetti but I have to cut into very small pieces. Your list and mine are about the same so I dont have any that come to mind. The yogurt will help move things, thats good for pills too. I have had to drink water with diary products now as the diary gets gunky in the throat. Nutrician drinks help keep a healthly diet and add calories. I know my spelling is atroshous. lol
 
If you can get it covered by your provider, you should also get a pneumonia vaccine to reduce cases of aspiration pneumonia.
 
Olly, you need to get checked out and you need to start thinking that a PEG is in the future. There is a local man with Pls who has a Peg. He seldom uses it, but occasionally it helps especially adding extra calories without the stress of worrying about choking.
 
notgivingup............thankyou,my son is usually home most of the time and is used to my problem.
he has got into the habit of stopping eating and watching to make sure i am ok.

michael..........thankyou,never thought of cutting up spagetti and noodles so will give that a try.
tablets are a problem and get stuck ofton.

beky....... thankyou for the tip,we can get that free if its needed.

aly, thankyou but i dont really want to think about a peg as i think if ever it would be years away.

i am ok,really its not a huge problem yet its just a case of being careful.
i hate going to the doctors or hospital,i always wait till i feel its too much and my gp knows theres something wrong if i turn up in his office.
last month i had an appointment with a female gp as it was about the menapause and hrt..........my gp was coming out of his office as i was going down the corridor and was supprised to see me,probably wondered why i was not going to see him and checked up afterwards lol.

yes its happening most times i eat now (food getting stuck and hacking to clear it)but thankfully not ofton choking which happens when the problems further down.
i have noticed i do sometimes choke on saliva if it trickles down the throat...........sorry for graphic details.
i do confess that i bury my head in the sand untill i am forced up for air.
 
One thing you can do is tuck your chin for a safer swallow. I'm off salads now too unless chopped.
Don't take any chances eating alone. Make sure the food is minced.
I know we hate to have to modify our diet but it really is a safety issue.
 
Hi, Caroline-
Sorry to hear of your difficulties. Good to take precautions.
Seems like salad (lettuce) is a common first "no-no" food- I recall Rose having that trouble early on, as is my husband.

Yasmin (cervus) has a very detailed post on dysphagia & food restrictions. It is in the thread entitled "What made you choke?", started by Al on 7-22; people with ALS forum.
Check it out; hope it helps!

(and if anyone can post the link, that would be nice 'cause ya'll know I'm too stupid!:lol:)
 
thankyou mare and sadiemae...........i see i did contribute to that thread.
the dysphagia soft food diet is very good and have saved it on my computer.

heres a dilema..........on thursday 13th october my friend and neighbour has invited me to an award ceremoney.
every year my local council do a gardening competition and the past four years my neighbour has won it for the best communial garden.
i nominated her this year and she wants to take me but...........it involves a three course meal.
i have been worrying about it as i dont like to eat in public with my chewing problems but i am worried if i have to start hacking............i would be so embaressed.
i could just have an odd nibble to be sociable and say my stomachs not good.........which it never is so its not really a lie .
i had thought about cancelling but dont want to let her down also it will be a rare occasion i can get dolled up in all my finery lol.
 
Thanks Lori!

Caroline- go, get dolled up, have fun! Eat before you go, and then just have a taste - there should be something being served that you could manage a bite of. Our motto now- it's not about the food, it's about the company & the fun!
(and we want a picture of you in your finery!:wink:
 
I have found the past couple years, that I have to slow down on eating and take much smaller bites. Salad is my number one choking hazard and anything with thick gooy melted cheese, like pizza and some cheesy pasta dishes. Dinner rolls can be a problem if I am super hungry at a restruant and they put warm bread in front of me! Mainly because I get too eager to squelch the hunger pangs and eat too quickly and take big bites. Some days seem worse than others. It depends on fatigue level for me. If I am really fatiged, I chew less it seems and I might not pay attention so much on the size of food I put into my mouth. I seem to choke more on fatigued days. Like the muslces are just to tired to work.

Caroline, you go and enjoy your day out! Nibble and move things around on your plate like you are eating. If they give you a choice of soup or salad, take the soup!
 
thanks everyone.
i will take my camera and post a few pic's.
having mini heatwave here ,upto 28 today.......not bad for 1st october.
going to sisters down the road for bbq later but need to stay away from the evil salad lol.
have a good day.
 
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