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Old 11-29-2011, 11:46 AM   #1 (permalink)
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Default Bulbar involvement

Hi all, for you people with PLS and bulbar involvement...........did your swallowing difficulties start intermittently ........just on certain foods and fine on others. I have had 3 days with terrible trouble getting certain food down. I swallow and swallow, sometimes just have to cough it back up. I have had swallowing issues in the past, but they had pretty much gone away
It didn't worry me, as I think I have a bit of neuropraxia from neck surgery a few years ago, but it should not suddenly get worse. If it continues I will have to tell Hubby, which will send him in a spin. Thought I would do some fishing with you knowledgeable people first.

Thanks y'all

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Old 11-29-2011, 01:01 PM   #2 (permalink)
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Default Re: Bulbar involvement

Dear Alyoop - Bulbar involvement (speech difficulty) was one of my early symptoms. The first swallowing test (about 1 1/2 years prior to diagnosis) showed no problems. The second swallowing test still showed no major problems--only some slowness at the top of the throat. I find I choke more on air than on food. I started eating more slowly several years ago--long before I knew I had any health problems. I cannot mix foods of different textures (such as peanuts and pudding). I can still swallow large pills but have trouble getting them to the back of my throat to begin the process. I also notice I have less trouble when rested.

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Old 11-30-2011, 04:45 PM   #3 (permalink)
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Default Re: Bulbar involvement

Alyoop. Mine started with bulbar in Jan my speech started to slurr when iwas tired. By march. Slurring was constant and swallowing difficulty stated. I could still swallow everything but water which choked me. I had to swallow slowly and use my finger to move food around as my tounge stopped working. In June swallowing becoming more difficult started chocking more. Second trip to emergency room. This time they admitted me after 4 days of test iwas was told. I had ALS
At this point could still swallow anything easy to chew. Chips. Fish chicken Vegtables soft cooked. By oct I could only swallow applesauce and chettos back to hospital with dehydration. And malnutrition. Lol I am a dietitian I knew better at this point they put in feeding tube. I could still swallow a little. Now I am just tube. I can taste my diet coke but can swallow very little and with a lot of work baby diapers and my suction machine have become my best friends as I cannot cough either This is my experience. Don't let it scare you. I am eating very healthy through my tube. Can still taste food but suck it right back out as I can't spit either. What I miss the most is kissing my husband he laughs about it we take it one day at a time
Hope this helps
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Old 11-30-2011, 04:57 PM   #4 (permalink)
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Default Re: Bulbar involvement

Aly, I've always had times when I had trouble swallowing, but have been told this was due to thyroid issues... (I have a slow thyroid)
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Old 11-30-2011, 08:40 PM   #5 (permalink)
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Default Re: Bulbar involvement

Aly,

As far as I know, I have slow progressing UMN dominant ALS, not PLS. My first symptoms were bulbar - speech difficulties followed by swallowing difficulties. Unlike limb involvement, the bulbar symptoms have both been highly variable. I can actually swallow better now than I could 10 years ago but it varies quite a bit even over the course of a week or two. I wouldn't push the panic button yet.

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Old 11-30-2011, 09:09 PM   #6 (permalink)
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Default Re: Bulbar involvement

That's interesting John. I have days when I have problems, followed by days when I don't. Today I am fine, but I am dieting and not eating much.......daughters wedding next week!

Felicia, didn't know you were a dietician. Susan is a speech therapist with bulbar onset. I am a neuro nurse.......who would have thought huh.

Hopefully it's just a passing issue.
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Old 11-30-2011, 10:51 PM   #7 (permalink)
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Default Re: Bulbar involvement

Aly
I feel sad for you. I know you dont want me to.... but i do.
Love ya lady!
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Old 11-30-2011, 11:33 PM   #8 (permalink)
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Default Re: Bulbar involvement

My dad had Bulbar Palsy, first the slurring then softer and softer foods. His biggest problems where water. He used to use this stuff called "Thick it" Thickened stuff up, (I think they took it off the market though) You do not want to diet, you will need every pound you have. Keeps you strong. Just remember you can always get the feeding tube put in and not use it, but it is there ready to go. 20 minute operation. Don't wait til you cannot eat, as you can see by one of our friends post. His mom's throat musuels are not working to good and she may be stuck on a breathing machine. That's the biggest problem is getting the breathing tube out quick . With the insurance company's they will not cover the PEG surgery unless the patient cannot eat at all. How cruel is that, so you cannot tell them you still can eat. My dad went home and ate ice cream and apple sauce. There was not to much discomfort after and he got the extra food through the tube. Took a lot less time for him to eat. I even got him a battery operated blender from Boat U.S. for road trips. Good Luck to you.
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Old 12-01-2011, 01:05 AM   #9 (permalink)
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Default Re: Bulbar involvement

I am not too bad, just was wondering about it being intermittent, feel better already, a bad case of being neurotic, ha ha.
I am a box of fluffy ducks or should I say fluffy kiwis?
Dieting is ok for chubby people with pls, just not ALS! Rats.........no excuse not to get skinnier.
Thanks all, have a nice night
Hugs
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Old 12-01-2011, 10:48 AM   #10 (permalink)
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Default Re: Bulbar involvement

Best wishes for a beautiful wedding day for your daughter. I hope the swallowing issues will be non-existant on the big day so that you can eat lots of cake!
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Old 12-01-2011, 11:48 AM   #11 (permalink)
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Default Re: Bulbar involvement

Tammy. You can still get thick it. Its behind the counter I tried it with water. Did not help me ... Alyoop I heard somewhere ALS mainly strikes smart people which makes it even crueler . We were all productive in society them bam. I was also in the military So really wonder about the vaccines I received Life' s funny like that huh
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Old 12-01-2011, 02:29 PM   #12 (permalink)
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Default Re: Bulbar involvement

Dieting, too, Aly. Lost 20 lbs. hope the swallowing is nothing...but shouldn't you mentioning t to your neuro at least, even if you don't want to tell hubby.
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Old 12-01-2011, 08:47 PM   #13 (permalink)
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Default Re: Bulbar involvement

I will try and say something when I see him in Feb. Took me 10 gulps to get my bread down this morning. I need to keep the mouthfuls small and then I am ok. A pig that's me. You know I have terrible trouble telling my neuro anything. You would think I would be ok but my last neuro was hell. Left me a shaking idiot.
If I have bulbar involvement then I have PLS. I don't really want to have a label, I prefer to hope it's something else. My genetic tests for HSP just came back normal.
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Old 12-01-2011, 08:49 PM   #14 (permalink)
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Default Re: Bulbar involvement

Good on you for losing 20 pounds, unless you weren't trying and that's not good. The weight loss has helped me increased my level of fitness and I am getting around much better than a year ago.
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Old 12-01-2011, 09:49 PM   #15 (permalink)
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Default Re: Bulbar involvement

Exercising isn't helping me at all. I did ok--but the next day the cramps in my legs were in mega-drive.

I know you don't want a label--but knowing has to be better than limbo. Can I suggest that perhaps you email your neuro? Or, even easier, see your GP and see if they can order a swallow study?

You're a nurse--I don't need to tell you the hazards of choking--what if you choke when you're home alone, though? BTW, if that SHOULD happen--use a hardback book and do the Heimlich on yourself AFTER you pick up a land line and call 911 (or whatever passes for 911 in NZ) and walk to your front door and open it. That way, should you happen to pass out--they find you immediately.

If you're choking to that extent, you can't live in "ignorance is bliss" safely, sweetie. Please tell at least your GP. You don't have to tell hubby if you don't want to--but get it checked please. I don't want to come on here and read a post that Aly passed away from aspiration. Don't make me come over there and drag you!

Edit to add: Yes, I've been trying to lose weight--I was hoping it would help my breathing issues--no such luck. But I'm keeping it up and am going to keep exercising--just not as much or as long. I need to keep as much of me healthy as I can. I lose weight pretty quickly when I eat less than 1k calories a day. And I'm drinking a lot of diet fruit punch as I detest water--so I drink it instead of as much diet coke. I've also cut down to almost no smoking. Using my inhaler electronic ciggie most of the time--but I might be overdoing it, as I think I might be getting too much nicotine with the puffer.

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