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Old 05-10-2010, 10:33 AM   #1
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Trouble Swallowing?

Hey guys,

I am still trying to recover from my "little" fall a couple of weeks ago. It turned out that I had a concussion, and now suffer from "Post concussion syndrome". My Dr pointed out that I had actually lost consciousness when I fell as there were gaps in my story. My friend who was with me, confirmed that I was out for about a minute. PCS includes a whole bunch of different symptoms. I have suffered (am suffering) from some pretty nasty tension like headaches, and my depression returned full force, both typical PCS symptoms. I am doing somewhat better though, still struggling with my mood!

Over the past few months I have noticed that it has become increasingly harder for me to swallow bread, crackers, and other dry food items without washing it down with a drink. It feels as if the food gets stuck at the edge of my mouth right before my throat begins. Sometimes I get a slight feeling as if I might be suffocating, but I am always able to breathe. Do any of you experience this? Is it a "normal" part of MD, and can anything be done about it? I have the feeling of a lump in there most of the time, but I am guessing it may be anxiety induced.

My husband doesn't always share my fears, so when I mention it to him, he just says that it can happen to everyone. Yes, but not several times every time you eat a slice of bread or a cracker! This really scares me!

P

 
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Old 05-10-2010, 07:13 PM   #2
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Re: Trouble Swallowing?

I have had difficulties swallowing at times. Pretty much like you describe. I sometimes find rice very difficult to get down.

There was a day a few months ago where I couldn't swallow ANYTHING solid. I was eating my lunch and basically choked on a bite of food because I couldn't get it down. Washed it down and tried another bite. Same thing. I tried about three or four times and could not swallow any food. I could drink, but nothing solid. It scared the crap out of me. I gave up and was on the verge of panic at dinner time. But the problem was gone by then and I never had it again.

I've told my neurologists about it and because it wasn't constant, they said not to worry about it.

I've had things like that happen before, meaning something happens that would be totally life changing if it was a permanent problem (like my breathing issues). But then the next day, the problem is gone.

But it IS very scary. You should mention it to your doctor if you haven't already.

 
Old 05-11-2010, 07:55 AM   #3
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Re: Trouble Swallowing?

Hey,

Thanks for your reply, I don't think I have experienced it with rice, I am having rice for dinner tomorrow night, so assuming I don't obsess about it I should be able to see if rice is also a problem. The meat gave me a hard time with dinner last night, I told my husband that at least once during every meal I have to wash my food down and swallow it as if it is a pill.

I have had my neuro at Mayo ask me a few times if I have problems swallowing, and I will bring it up the next time I go to see my Dr, if I am not afraid to do so. I am just so sick and tired of no good news, and feel that if there is nothing that can be done, why not just have a good time while I still have a little dignity and quality of life left? We still enjoy going to baseball games, concerts, kayaking etc. My husband and friends are always very helpful, but once I am wheelchair bound and possibly depend on a ventilator and feeding tube, what will be left for me? We don't have kids that will need me, and my husband is still young and should be able to move on and have a good life.

Venting again I guess

P

P

 
Old 05-11-2010, 08:04 AM   #4
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Re: Trouble Swallowing?

P --

I know how you feel. And you didn't say one thing that I haven't sometimes asked myself.

When I first realized that breathing problems COULD become a part of all of this, I told my husband flat out that I would NOT use any breathing equipment to keep me alive and if it came to that, he was to just let me die. And I meant it too. The last thing I wanted was to be dependent on breathing equipment.

Two things happened that changed my mind. First off was the breathing issues coming up a lot sooner than I had expected. Second -- the look on my husband's face tore my heart out. I think in his mind, it was almost like I was saying that he and the kids weren't important enough for me to try to stay with them, regardless of what might be involved.

So -- now I'm on oxygen and forced ventilation at night -- every night. Do I like it? No. Do I resent it? Sometimes. Do I sometimes get downright angry over it? Yes. Do I use it every night anyway? Yes.

I love my husband and if he's willing to stick with me, I owe it to him to do my best to adapt to this stupid disease.

P -- I know it's not easy. And I know how you feel about the swallowing difficulties. I know that because I HAVE experienced it, it may be in my future too.

Let me know if I can help you in any way. I really do understand what you're feeling.

Kathy

 
Old 05-11-2010, 08:59 AM   #5
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Re: Trouble Swallowing?

Hey Kathy,

I too have seen the look on my husband's face, he loves me more than anything, and keeps telling me that I am projecting my feelings onto him, and that he does not want anyone else but me.

I am causing my husband a lot of pain and worry, more than I probably should, he is scared if he knows I am upset and he can't get a hold of me on the phone.

He is so proud of me and tells me how well I am doing, but the pain just never goes away. I feel good for a little while, and then something stupid like my fall happens, to remind me of what my life has become.

Anyway, this morning wasn't supposed to be my venting morning, it is a beautiful day in North Florida, and I was supposed to sit on the patio and enjoy the weather before it is time for work.

P

 
Old 05-13-2010, 03:18 PM   #6
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Re: Trouble Swallowing?

Kathy and P,

I feel for you both. I am fortunate that I've not yet had troubles with breathing or swallowing. I DO aspirate liquids sometimes. Never when drinking but things like soup, milk in my cereal, stuff like that........liquids being eaten with a spoon. I realized that maybe I've just developed a bad habit of inhaling while eating these things. But I'm not sure. It's been not quite so bad lately.

Whatever the case it is always terrifying when a new symptom creeps up on you and you realize it's here to stay. Every month I say to myself "if it doesn't get any worse, I'll be OK". But of course, it always get worse.

You gals cross my mind almost every day, plus the others out there. Otherwise I'd feel that nobody truly understands how it feels to be locked in these defective bodies.

Take care and I wish you both that something nice happens in your life this week.

Mark

 
Old 05-14-2010, 03:41 AM   #7
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Re: Trouble Swallowing?

You are so kind Mark,

Sometimes I really wish I could meet you guys, I have only ever met one other person with MD, and that was a 10 year old with Duchenne, so I couldn't really relate to him.

I remember a while ago you mentioned making it to a Tigers game. Next Sunday, May 23, my husband and I will be flying to Minneapolis to go to a TWINS game in their new ball park. I used to mostly enjoy baseball because I liked looking at the guys in uniform, but since I am no longer 25 I am not sure it is appropriate I could be some of these kids' mother;-) (getting off track here). I am really looking forward to going to their new park. When they played in the dome, parking and accessibility was hell. It was possible, but you could tell that they had adjusted the dome to fit ADA standards and not built it to fit. The new park has received excellent reviews, my husband told me that all of the accessible seats are near the entrances and the accessible rest rooms, so no entering on one side to go to get on the elevator on the other side only to go back to your seat on the first side again. Also, there are more than 800 accessible seats in the park, which is the part I like the most. They are able and allowed to sell tickets to more than one disabled person with companion, this means that all eight of us can sit together and enjoy each others company during the game. In the past we have had to separate and people would take turns to come and sit next to me.

I am positive that with my cane and my husband, I will be able to attend the game without having to borrow a wheelchair, I even plan on tackling the Mall of America (at least for a little while).

This really didn't have anything to do with swallowing, but I just thought I would share what I hope will be a positive experience. I have been thinking about creating a website that collects information about accessibility. I think it could be a good resource for people like us. For example, don't fly Air France, this park will charge you $45 for a scooter, this beach is accessible with good facilities etc. If I could make it commercial it would be even better. What do you guys think? It was just an idea, it probably already exists.

P

 
Old 05-14-2010, 07:38 AM   #8
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Re: Trouble Swallowing?

Hey P,

This is off track of the original subject but.....

The Detroit Tigers new field, Comerica Park opened in 2000. It is TOTALLY accessible. The entire concourse level (street level) has accessible seating almost the entire perimeter around the stadium. Basically, just above the last row of seats in the lower level is a platform. In each section there are numbers on the ground and 6 or 8 padded folding chairs that can be moved onto any spot. The person with the scooter or wheelchair can sit in an empty spot. In addition, there are several sections with switchback ramps that take a handicapped person even further down to the field. We lucked out and got these. My wife and I sat about 12 rows up from 1st base.

At any rate you should not encounter any steps at all. I am SURE that the Twins' new park is at least this accommodating if not more. Their box office will gladly help you with HC seating. I hope you have fun.

Mark

PS - your website is a great idea.

 
Old 05-15-2010, 08:32 AM   #9
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Re: Trouble Swallowing?

Quote:
Originally Posted by michigani View Post
Kathy and P,

I feel for you both. I am fortunate that I've not yet had troubles with breathing or swallowing. I DO aspirate liquids sometimes. Never when drinking but things like soup, milk in my cereal, stuff like that........liquids being eaten with a spoon. I realized that maybe I've just developed a bad habit of inhaling while eating these things. But I'm not sure. It's been not quite so bad lately.

Whatever the case it is always terrifying when a new symptom creeps up on you and you realize it's here to stay. Every month I say to myself "if it doesn't get any worse, I'll be OK". But of course, it always get worse.

You gals cross my mind almost every day, plus the others out there. Otherwise I'd feel that nobody truly understands how it feels to be locked in these defective bodies.

Take care and I wish you both that something nice happens in your life this week.

Mark
Thanks Mark. I'll send you a wish that some of these problems NEVER find their way to you. I think it's one of the things that is so frustrating (for me anyway) -- never knowing which of the symptoms I'll have and which ones will pass me by.

One of the classic symptoms of Mitochondrial Disease is hearing loss. So far, that one has left me alone -- even my husband says that I hear better than anyone in the house!!

I think all of us are in the same boat -- knowing what symptoms and problems COULD occur, but always hoping they don't ever manifest themselves.

 
Old 05-15-2010, 09:06 AM   #10
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Re: Trouble Swallowing?

Hi

I hope you are doing OK. Trouble swallowing is part of your illness and the symptoms you describe do indicate a problem swallowing. I would recommend that you consult a Speech-Language Pathologist for an evaluation. He/she can evaluate your swallowing and make recommendations to reduce your risk of choking or having food going into your lungs. Rest assured - there are strategies to manage these problems.

I work as a Speech-Language Pathologist who works in neurology so I definitely understand what you are describing.

I wish you all the best

Teresa

 
Old 05-16-2010, 11:14 AM   #11
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Re: Trouble Swallowing?

Thanks Teresa,

I was afraid of that. Do you know if I need a referral from my neurologist or my primary care dr to see a speech language pathologist?

P

 
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