My dad is showing warning signs of Dysphagia as a new symptom of his MS. He has an upcoming appointment with his MS specialist where we plan to bring these symptoms up [My father will not bring these symptoms up himself as he has been ignoring them and lying to us about it being just a cold. As far as I know he doesn't even know what Dysphagia is or involves. Willful ignorance, gotta love it].

I know Dysphagia is a huge issue for MS patients and is the number one 'killer complication' of the illness, so I'm more than a little freaked out...the research I've done seems to point to a very severe scope for treatment. Is it really such a short journey into feeding tube territory?

I know every patient is different, and most here on AgingCare have loved ones with Dementia and Alzheimers, not MS...but if anyone could share timelines or treatment experiences specifically surrounding Dysphagia I'd really appreciate the first hand info.

Was progression/decline rapid in your case or did your loved one live for years with management?

How quickly after diagnosis was food alteration [puree/thickening, ect] needed?

My main concern is that I know my father would never want to live with a feeding tube and enjoying familiar foods is a huge part of his quality of life at this stage...if he gets this diagnosis in a few weeks it's scary to think we'll be having the DNR/non-intubation discussion.

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Sandy, thanks for sharing your positive experience with a feeding tube. I'm not familiar with the button tube, but I'm guessing that there not only have been changes but that each person with dysphagia has a different situation.
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My husband has ALS and can no longer swallow or eat full meals, only “pleasures eating”. Haha, it’s not pleasurable if you are coughing for the next hour! He had a J tube inserted (with only a local) into his stomach 3 months ago. Yes it was a long tube that was in the way. (There are belly bands available on Amazon that have pockets that carry the tube.) He didn’t need the tube at the time and continued to eat. I only flushed it twice a day with water to keep it clean. However, a month later, he had another swallow test and was told to use the tube and formula was ordered for him. After 8 weeks of healing, the J tube was removed and a small “button” tube replaced it. It has an attachment tube that is used for feedings and is then removed. I wash and let it air dry and have had no issues with clogging. I insert 2 boxes of formula for each meal using a large syringe. It takes only minutes! He has been able to put some lost weight back on and it’s keeping him alive! He can do anything with his button tube, even swim! If he wasn’t strong and still able to do most everything he wants (except eating) I may have a different opinion of his feeding tube but now it has been a God send to us!
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My friend who will be92 in Jun was diagnosed with dysphagia and should have been on puréed foods a year ago. We tried and he stopped eating. The speech therapist explained pleasure eating, which just means let him eat what he wants and enjoy it. Then he was hospitalized in Jan with pneumonia plus plus plus. Due to his hospitalization his dementia declined even more ( probably would score maybe a 3 or 4) and he started eating puréed foods with no problems. If his mind is intact he should make the decision between pleasure eating vs puréed foods. I wouldn’t force anything upon him.
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Many advise against a feeding tube for good reason. In some cases it really does not help and is just a way to make money.
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Does he have a living will that lays out his wishes? Do you have a signed POA to be the decision maker for his care ( could be important if there are opposing opinions from family). Because my father had neither a will or living will, my mother had to be the decider when it came to whether to insert a feeding tube or not when he stopped eating. She hd one placed because she said she couldn’t stand to watch him starve to death. He lived 18 months in what looked like misery, in an advanced AZ state. In the end, she did regret putting the tube in, but he never discussed his wishes with her, so she made an emotional decision. She made her own living will after he died; and when her own kidney disease worsened, she made it clear to us 3 children that she did not want her life prolonged artificially. In her last 2 weeks of life as her kidneys stated to fail, the decision to watch her slip into a coma was tough, but her wishes were respected. The only thing we did was the best for her. Give all the love and support for her journey as we could.
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My husband developed swallowing difficulties as a part of his battle with lymphoma. We began to notice that he was regurgitating food, and they found that a lung tumor, which had been dormant for years, was impinging on his esophagus. He spent about a week in the hospital at the end of his journey, and they put in a feeding tube with the hope of preventing or ameliorating aspiration pneumonia. That lasted one night, and he pulled it out. At that point, there wasn't anything that they could do that wouldn't be worse, so they gave whaever liquids he could handle for what was his last week.
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My wife suffered from MS, one of her first problems being a swallowing disorder, she could not swallow liquids. The dr's inserted a G-Tube through her abdomen directly into the stomach which allowed us to give her water. This procedure was performed at the "University of Irvine, CA" Medical Center located in Orange, CA.

At first, we were giving her baby food, which she was able to swallow. We learned she was not receiving enough nutrients for the baby food, so we began pureeing our same meals for her. She enjoyed this much more and also received more of the nutrients required.
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We were just at the Doctor today with this problem. The Doctor knows Papa’s wishes, so he doesn’t want to do a swallow test because he knows Papa would fail it - then the Doctor’s hands would be tied. The Doctor said food is one of the few pleasures Papa has left. We will just be careful what we make for him. So far, Papa won’t even consider thickened liquids. He’s 90 and has Parkinson’s.
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Probably a swallowing disorder was the first sign that my late husband was having problems. He had a sphinctectomy in 2006 with Dor wrap--which is that his esophageal sphincter was cut and the upper part of his stomach wrapped around the esophagus to prevent reflux. Somehow this worked, although he could not eat large meals afterwards due to smaller stomach. Eventually he died (2013) from major stroke. But the procedure was definitely worth it for the years he did have left.
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Not sure where to start or whether this will help or not but I have relied on a feeding tube for the past almost three years.

I do have a tube sticking out of my belly and it is painful if you tug on it I can't get water in it so no deep soaks in a tub or hot tub plus absolutely no swimming. i had three failed swallowing evaluations so medicare did approve the cost which apparently they only do 25% of the time.

Everything is supplied, the Iv pole to hang the bag, the pump (electric with battery back up, feed bags, syringes and the formula. The dose is determined by a dietician based on the persons requirements. I need 3 X 12 oz cans daily.

I do mine overnight and the process is quite simple. You pour the formula into the bag, screw on the top and hang on the IV pole. The tubing has to be primed to get the air out and each pump has a different method. You then use one of those big syringes and flush the tube with water and connect the feed. Push a button and here comes dinner!

A few downsides, the tube easily blocks so you have to be very vigilant with the flushing. If mine is blocked I can usually clear it with a small syringe which you are not supposed to do and it can burst the tube, then I mix about a teaspoon of bicarbonate of soda in about 20 ccs of warm water and flush that in. After a few hours it will usually flush clear. Other people have different liquids, like Coke they use to clear but I have found the bicarb is the best.

Every three months the tube has to be changed. This is a hospital out patient procedure and takes about an hour or less and then an hour in recovery if sedation or narcotics were used.
The initial placement of the tube in my case was done under general anesthetic because i was so ill and refused without it. Now I would have it done with local. It can hurt when the tube is pulled out and reinserted but it is very brief and they usually have some IV Fentynal and give a quick shot of that which is immediately effective when I squeal

The tube I have is called a G/J tube which means it is first pushed into the stomach through an internal incision then fed through the natural opening into the small intestine. It has to be done under sterile conditions in a procedure room under X ray monitoring to make sure it is correctly placed.

It really is only as big a deal as you allow it to become. I still eat foods I fancy in very small amounts and don't use thickened liquids, Well cooked vegetables are fine and expensive protein like scallops and shrimp. Cheese is OK too and I have a fancy for Blucheese and other exotics. Most fruits are OK especially canned. Apples are difficult because of the fiber and I have to peel them.

I would say don't agree to a tube that they put down the nose, they are very uncomfortable. Also I would not consider any type of tube feeding for someone who is in the last stages of their life.

If your loved one does aspirate there will be a lot of coughing so learn the Heimlik manouver. If they can tolerate lying on their belly with the feet higher than the head most things will run out especially with gentle pats on the back. Other than that if they can stand and hang their head that may help too.

If you feel your dad still has some quality time left to enjoy it would be a good decision to keep his nutrition up which will help his general wellbeing. Tube feeding is an inconvenience not a death sentence
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Ask his doc to prescribe Occupational Therapy to assist with this issue. It's covered under insurance and will help a lot
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Bless your dad’s heart. One of the joys of my life is eating too. I’ve had bouts of dysphasia over the last 8 years or so, only occasionally thankfully.

I got the stomach flu this winter and the retching, vomiting, dysphasia and stomach pain went on for two months. I had the MRI to check my swallowing and was pretty thoroughly checked, end to end. I was told they didn’t find anything wrong. I lost 40 pounds in 2-3 months. I imagine my biggest problem is nerves. Both my parents are infirm and so life can start revolving around them. I got some time off by being very ill.

Just a reminder to grab yourself some time off before your body grabs you!

I still have no diagnosis but if I get too excited in relation to them I’ll start to retch and vomit. The mind body connection is strong.

My sympathies to your dad and you and your family.
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LastStraw, you're wise to address this now.

First, the progression through the stages of dysphagia isn't based on time; it's based on personal health issues, age, past issues (such as having been intubated), and measured by a videoscopic swallow study which allows the speech pathologist to determine the severity of the aspiration.

I've sort of been blocking this information out as it was a major cause of my father's decline, but I'll share some aspects of what I remember.

First stage I believe was to go from regular eating to mechanically soft foods, then pureed at either a nectar or honey thick level. I found a very good mini food processor to prepare the foods. You can blend them to any of the 3 levels. But this is a time consuming process, and some foods just can't be pureed easily.

Ask if you want more information on specifics; I don't want to load this post down with information (like I usually do!) that might not be necessary.

I also did a lot of research to try to find already pureed foods; I found some but the prices were astronomical - $7 or $8 for a 15 ounce can of meat, plus shipping costs.

Liquids will also need to be thickened, again at either the nectar or honey thick level. These are easier to handle; just buy some "thik-it" at the local grocery or drug store and add the dry powder to the required level.

My father had 2 major episodes, one after being intubated and trached for several months. This was eventually resolved with Shaker and other swallow strengthening exercises. The second episode was in his late '90s and only worsened with age and decline.

I wouldn't consider the eating regimen as "severe", but it can be time consuming, burdensome, and less appetizing for the patient to eat what is almost equivalent to baby food. Some of the commercial services offer suggestions to "pretty up" the pureed food and make it more appetizing. And I think that's part of the unappealing aspect - it just looks like mush and is not at all inviting to eat.

The other option of a feeding tube is more of a compromise, and more or less end of the line option. The important question you need to ask the doctor is whether or not that will require intubation. That's a major issue as, unless there are portable machines of which I'm unaware, it literally chains the individual to the intubation equipment, and being bedbound.

Being tied to intubation equipment and being bedbound is a major decline in the level of life. It was at that point that DNR desires were discussed.

When my father tackled dysphagia, he was able to progress to using just a feeding tube; he had been extubated so being tied to that machine was no longer required. He then was discharged from a SNF after he had gotten the maximum therapy available, and we continued with home speech therapy.

He was still "eating" through a feeding tube in his stomach. Nothing, absolutely nothing, could be consumed orally ("NPO"). Every four hours, I cleaned a large syringe (about 1" in diameter), added mashed meds and a can of Nestle's Pro Balance, and "fed" him. Then the syringe had to be flushed again. I was very, very, very cautious to do that, not only so there were no lingering bits of anything but also b/c the liquid went directly into his stomach, and I was worried about possible bacteria on the syringe.

He needed 6 cans overnight, but Medicare at that time didn't provide bags large enough for more than 4 cans, so I had to start the night time feeding about 7 pm, then add the last 2 bags about 1 a.m. Then back up at 7 am for the nextapproximate 4 hour cycles.

It was grueling, and exhausting. It was only a few months before I crashed and one day overslept. When I started the feeding, the tube was clogged, but I used apple juice to loosen the clogs as directed by the nurse. It's a real challenge for anyone to do this at home.

So, first I think your father would be scripted for a videoscopic swallow study to determine the level of dysphagia. Then you'd be either given or directed to read up on that level, and find ways to prepare the foods.

I would definitely raise the issue of the Shaker or other exercises, but with MS that might not be possible. (There are other tips a speech therapist could provide, such as "chin tucking" when swallowing to minimize the danger of aspiration.)

I think progress or basic stabilization may be a function of the level of MS, the effect of any exercises, age, overall physical condition, and of course the unfortunate but inevitable age related decline.

I hope this has helped. If you have specific questions, please feel free to ask. I know that others here, including CWillie, have dealt with dysphagia as well, but I don't know if any were also addressing MS simultaneously.
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My mom (vascular dementia) has been on a modified diet for years now, first with nectar thickened liquids, then a minced diet and finally this last year in the nursing home with a full puree solids and honey thickened liquids diet. I've noticed her coughing more lately when she eats but with care taken to give her small bites and watching for problem foods and textures (yeah, the NH often doesn't get this right) she has been maintaining her weight and so far as I know has avoided aspiration.
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Karsten: MS is definitely very different from Alzheimers but as far as I understand it the Dysphagia seems to function similarly, so thank you for sharing what your father went thought...sadly that reflects much of what I've been reading about late stage MS and Alzheimers patients who are at 'hospice level' care...which thankfully my dad is not at currently, he is otherwise independent with his other symptoms.

It really sounds like you were in a 'damned if you do, damned if you don't' situation with feeding your dad; I'm sorry it was rough for his last few weeks. I completely understand about the timeline thing, thank you so much for what you did share.

Cognitively dad is still very much 'with it' but has always displayed an avoidance of accepting his new symptoms until they become emergencies...sadly we can't trust him to tell us when something is wrong. He is technically legally competent to make his own medical decisions, but the last two times he was seriously sick/injured my mother and I have had to call EMS against his wishes; it's a really tough catch 22.

"it is vital to have this discussion before you all come face to face with the decision." THIS is exactly the page I'm on at the will be hard to get dad to actually face these decisions because of his ignorance/avoidance of what MS entails. He is not forthcoming when it comes to talking about himself [even when health isn't the topic of discussion] but I'm hoping he will have some thoughts on what he'd want and not want...or is at least open to thinking about those things given some time and supportive prompting.

I have not yet read Being Mortal but have seen it recommended frequently here, I might pick it up sometime soon.

Thanks for reaching out Countrymouse.
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It must be an extremely scary prospect. But as you know what your father's views have been, and as it becomes a realistic possibility, it is vital to have this discussion before you all come face to face with the decision. You don't want to be reacting to one crisis after another until you find that your father is enduring the kind of life he always dreaded.

Having said that, it is important to do more listening to him than talking. What he never would have wanted before, and what he is prepared to compromise on now, may not match. Do everything you can to make sure he is making a completely free choice - no question of his "changing his mind" or "giving in" or anything else that might make him feel he has to stick to his earlier statements.

How is your father doing cognitively?

And have you read Atul Gawande's book "Being Mortal"?
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I re read your question and realize I did not address the timeline issue. I don't feel qualified to address that. My dad had about then weeks after going on pureed foods, but I am guessing that can wildly different.
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my dad recently died due to complications of Alzheimers. The one that really precipitated the last decline and perhaps was the ending one was swallowing problems.

He aspirated so got pneumonia, and recovered from that a couple of times but each bout seemed to make him overall worse.

After the diagnosis, he went on pureed foods and thickened liquids to reduce the aspiration risk, but it just reduces the risk. Meanwhile, my dad hated the pureed food. One MD had suggested one option is to just eat more normal foods (within reason) and have him at least enjoy eating more. I am not saying you should do that, but it is an option that maybe, looking back, we may have tried. The poor guy hated that pureed food so his last weeks he didn't even have any pleasure in eating. But had we done that then he died sooner, we may have kicked ourselves for that.

If I understand, MS is a different animal. My dad just had a certain amount of time left in him no matter what. I don't know if that is the case with MS so that may effect decsions.

Oh, and after we heard of what a feeding tube is like, we never considered that.
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