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L4dybugg

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Andy had his Swallowing & Pulmonary Function test done today. We did not get good news. :sad:

On the swallowing test:

He failed every sip that he had to take from start to finish. She said that the speed of his swallowing was 3 times slower than what it should be, and that his swallowing muscles was 50% weakened.

she put him on a special diet as follows:

This is a Dysphagia Advanced Diet

Description: The dysphagia mechanical II or dysphagia mechanical soft diet does not allow excessively dry, crumbly, chewy, or stringy foods.

Cereal and breads: Avoid hard rolls, popcorn, cereals containing nuts or dry fruit, and granola. No cornbread or dry breads.

Eggs: Eggs can be eaten only if they are soft-cooked or scrambled, or if they are made in egg salad.

Meats: Meats that are ground or chopped soft with gravy; moist fish; soft to chew casseroles.

Dairy: Yogurt, cottage cheese and other soft cheeses.

Starches and vegetables: All soft cooked vegetables. Avoid raw vegetables and those with a stringy texture. *No shredded lettuce*

Fruits: Fruits can be eaten if they are very ripe and well diced; they are to be eaten without the seeds or the skin.

Desserts: Gelatin, ice cream, puddings, and sherbet are allowed.

Beverages: The physician will specify if either thick or thin liquids are allowed on this diet. (at this point he can have all beverages)

(Hubby is not too happy about going on this diet)

The swallowing Precautions she gave:

Diet: Dysphagia Advanced
Liquids: Thin Liquids
Meds: With pudding, applesauce or yogurt and plenty of water

No crunchy or chewy foods (example: lettuce, raw vegetables, caramel, chewy meats, ect).

No mixed liquid/solid consistencies (example: cereal with milk, soups with chunks, juicy fruits, etc)

No kernals (example: vegetables with hulls (corn, peas), rice, grainy breads or hard rolls, popcorn, nuts, etc.)

Eat slowly- pause between bites

Upright 90* for all meals

small bites, small sips

Double swallows

No straws

Alternate liquids with solids

I asked her if this was Bulbar onset, she seems to think so, she was very nice and told him to call her if anything changes. And to come back whenever he wanted for retesting later.

For the Pulmonary Function test:

As far as the lungs, there is no obstructions, no need for any meds on the lungs. The lungs itself are fine, but he said that Andy did not have much power or strength, and seems to think it is from weak muscles.

Here is the report we have: Hope you can make it out, lol.

Spirometry:

FVC liters PRED 4.18 Pre-RX Best 4.28 %PRED 103 POST-RX Best 4.26 % PRED 102 % chg -0

FEV1 Liters PRED 3.46 PRE-RX 3.04 %PRED 88 POST-RX BEST 2.96 %PRED 86 %chg -2

FEV1/FVC % PRED 83 PRE-RX 71 POST-RX BEST 70

FEF25-75% L/sec PRED 3.72 PRE-RX 2.19 % PRED 59 POST-RX BEST 1.95 %PRED 52 %chg -11

FEF50% L/sec PRED 4.45 PRE-RX 3.38 %PRED 76 POST-RX BEST 3.51 %PRED 79 % chg 4

PEF L/sec PRED 8.33 PRE-RX 4.77 %PRED 57 POST-RX BEST 4.59 %PRED 55 %chg -4

MVV L/min PRED 151 PRE-RX BEST 93 %PRED 62 POST-RX BEST 90 % PRED 60 %chg -3

Lung Volumes:

TLC Liters PRED 5.99 PRE-RX BEST 5.29 %PRED 88
RV Liters PRED 1.77 PRE-RX BEST 1.06 %PRED 60
RV/TLC % PRED 31 PRE-RX BEST 20
FRC N2 Liters PRED 2.81 PRE-RX BEST 1.47 %PRED 52
VC Liters PRED 4.18 PRE-RX BEST 4.23 %PRED 101

Diffusion:

DLCO mL/mmHg/min PRED 28.8 PRE-RX BEST 29.4 %PRED 102
DL Adj mL/mmHg/min PRED 28.8 PRE-RX BEST 29.2 %PRED 101
DLCO/VA mL/mHg/min/L PRED 4.32 PRE-RX BEST 5.44 %PRED 126
DL/VA Adj mL/mHg/min/L PRE-RX BEST 5.42
VA Liters PRE-RX BEST 5.39

Flow:

There is a graph here, and he did not get above 4 here.

This all will get back to his neuro maybe today sometime, so I hope that this will speed up him getting to go to Nashville. I was not surprised of the swallowing test, knowing how he has been doing, but I was surprised at how bad it is.

So any input at all is welcomed. Mainly keep us in your prayers, and thanks everyone for your friendship, it really means alot.

Hugs Lori
 

BethU

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Hi, Lori ... I'm so sorry for your husband's condition. Can't comment on the breathing function, but the diet sounds very appropriate.

The hard part for me in eating/drinking is to remember to do everything "consciously." Being aware of the eating process, not getting careless. I like to read when I eat, and that's when I forget and take too big a bite of something, or get up from the table with a bite of food in my mouth, and not pay attention ... and then, I'll choke.

Your husband still has a wide range of foods available, so he should be able to enjoy his meals, even with all those restrictions.

And I'm so glad you have an understanding, caring neuro who is available for phone consultations.

Good luck .... and you are in my prayers.
 

brooksea

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Lori,

Sorry about the swallowing. I make lots of dinners using "cream of" soups. I make a gravy by putting the soup in a bowl (don't add water or milk) with a tsp or two of dry mustard. Heat in microwave, add 1/2 pkg (or more :-D) of shredded cheddar and stir/heat til melted. Bake some chicken breast with rosemary and chop it up fine when done. Pour gravy over chicken. Egg noodles, mashed potatoes, or mushy rice are good with this.

I know the diet looks rather dull on paper, but just use your imagination and you can make some tasty meals for hubby. The only problem is they are tasty for the CALS too! Lots of calories. But that is good for the PALS.

You may want to get one of those magic bullets to make individual smoothies and shakes. It can also puree some vegetables to flavor sauces.

As for the cornbread - my husband still eats it, but he waters it down to mush with pot liquor!

He really needs to keep the weight on and I've found that thick sauces agree with my husband and his appetite, so he has maintained his weight around 200 lbs. He lost about 15 lbs. in 2007 and we've put it back on!

You and your husband are in my thoughts. Hope his breathing remains strong!
 

L4dybugg

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Thanks ladies. Send all the recipes. lol. Hubby is not liking the idea of this, I don't want to push it, but I don't want him to choke to death either. Should I just let him go at this at his own pace? My hubby is a very picky eater, lol. But I am a good cook.

Sorry about the lung test, I can't make it out either, lol. It is running together. Well when I find out more about this, I'll post it.
 
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brooksea

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Yes, it is his body and his decision. He will eventually learn his lesson and will want his foods chopped fine, etc, etc... I think my husband was more open to watching what he eats because he had a real scary episode a long while back where he could not swallow at all and had to be hospitalized. This was before diagnosed of ALS. They thought he had a piece of meat stuck, but never found anything. I don't think your husband would want to go thru what mine did...drooling into a glass while waiting in the ER, while waiting for all the tests to be done, while waiting for it just to stop! We had no clue it was ALS at that time.

Another thing is aspiration. He doesn't want to end up with pneumonia or psuedomonas by choking and aspirating food or liquid into his lungs.

Good luck my friend! Maintain a positive attitude!
 

freddiesnetty

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There is an ALS cookbook that has recipes, I will look and see if I can find the name of it, Dr Appels(the MDA neuro here) wrote the recipes up, It was a good book for awhile, now Freddie has a peg, I do alot of grinding food for him, a lot of people do use the Jevity. I prefer to grind for him...I will look for that book and mail it to you if you would like....
Your Friend,
netty
 

Icanmanz

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hey netty! How's my friend Freddie? I have been running the streets for days trying to get ready for tomorrow, and guess what? I am ready. I have to be at the Surgery Center here in Tomball at 8:00 am. My op will take about one and a half or 2 hours. I am ready to put it behind me. I'm gonna be in the hospital for 3 days (yuck) TTYL I have oodles of things to do before I leave. Later, girlfriend!

Irma
 

L4dybugg

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Netty- How sweet yes if you don't mind, I would love the cookbook. I will PM you and give you my address.

Thank you

I already don't know what I'd do without all of you ;-)
 

jennibf

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I have no advice but prayers! Lots of prayers!

Jennifer
 

L4dybugg

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Thank you, we are both going to need all we can get, but we are also praying for all of you.
 

lovelily

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Hi Lori....I'm sorry for your husband. Continued prayers for the both of you.
 

L4dybugg

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Thank you Lovelily.

-I have some questions-

There is alot going through my mind right now. It seems like things are progressing so fast, we have not had time to absorb it in. My heart goes out to all of you that are going through this, whether you have been diagnosed or not. I know it is agony the not knowing, and you know something is truly wrong. We are there now, but we are getting closer to answers. You are all in my prayers.

Back to my questions, I know that different people progress at different speeds, and no one can predict how fast, but on average, how fast can we expect this to progress to the point of a feeding tube? How will I know when it is time? I guess the choking more? Is it true that with bulbar, they do not live as long? I know I am pretty much answering my own questions, but any more info would help.

Thanks Lori
 

brooksea

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Started posting and it disappeared! Hopefully this will make it:

Lori,

My husband was diagnosed with Bulbar/Limb onset ALS on 09/19/2006. He is still able to talk (slurred) and eat (modified diet). The medical practitioners he sees seem somewhat amazed that his progression has been this slow. I attribute a lot of this to his positive attitude, which I think is very important when dealing with this disease. Course I could be totally wrong and he's just lucky!:roll: Who really knows?

It's great for you to educate yourself and try to find answers to your questions about this disease so you and he can be prepared.

My husband was on a plane in 2007 and sat next to a guy that was chatty. Hubby explained he had Lou Gehrig's and that is why his speech was slurred. The guy told him his brother had died 2 years after diagnosed of ALS Bulbar onset and told him he was sorry my husband had the more aggressive form of the disease. Of course, my husband didn't know what the heck he was talking about. The guy then explained to him that pALS with Bulbar onset do not live usually past two years. Thanks a lot stranger! My husband was terrified for about 3 months after that. He now is proud to be able to actually say the words "I've been diagnosed for over 2 years!" And the doc at the clinic says he's had it for many years before diagnosed.

I guess what I'm trying to say is what you already know: there is no crystal ball.

I hope you and your husband are able to enjoy many years to come and can face them with courage and laughter!

Good luck my friend!
 

BethU

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hi, Lori ... CJ is right. There is no way to predict how fast/slow things will progress. But there is very good reason to be hopeful ...

My bulbar symptoms started in March 06. Here's what my neuros told me this June about the feeding tube. They said that they would probably be recommending the tube to me when my breathing reached a certain level, which would be well in advance of when I might actually need it for feeding. The reason for this is that they want to do the procedure when the patient is still strong. It's apparently not a difficult procedure ... they do it under a local anesthesia ... but they don't want to stress a patient who is having breathing problems.

So, they will probably bring it up before your husband actually needs it for nutrition.

I saw the clinic neuro again in August, and I had gained 10 pounds (they told me to try to gain weight back), and my breathing had actually improved a little bit, and they didn't mention the tube. I see them again in December, and I kinda expect them to mention it then.

Anyway ... we have forum members here with many years of survival with bulbar onset. I've got 2 years, 7 months so far, and am still driving, still eating by mouth (although not in public. I make a real mess !), still functioning pretty well ...

You two hang in there. You still have a lot of life left to live together!
 

patricia1

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Some people dont think before they talk:roll: I have bulbar onset 9 years.
They are still learning about ALS so no one can play God and tell us how long we have


Keep Positive
Pat
 
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