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Hi Ellisa. I posted a link for some pictures of my hands and the brace I wear. It's under this General heading titled Hand Atrophy Pictures. Click on the link and it will take you to the pic site.
 
Gee Al. Thanks for telling us that that spongy stuff is fat, now that the muscles are going away. Now THAT'S gross! (LOL)
 
Al,

Words can not tell you how grateful I am for you showing me real pictures (especially yours) of what exactly hand atrophy looks like. Reading or people trying to describe what it actually looks like is so incredibly hard to picture in your mind. But actually seeing first hand what you read and hear about actually puts it all in prospective. Thanks again for modeling those beautiful hands of yours. I would also like to thank you for answering my other questions which I could not find answers to anywhere but here. Thank you millions Al for your time, knowledge and most of all your generosity that you are willing to give to others and myself about this life altering disease.,


You are a true blessing
Ellisa
 
Guess What another 20 questions

I hope everyone had a safe and enjoyable Thanksgiving and Al I hope you enjoyed your roast beef. My family and I had a nice and quiet day spent at my moms home making complete PIGS of ourselves on her eggplant and shrimp dressing, stuffed crawfish bread and her famous smothered pork roast (my favorite) which I literally choked to death on at the dinner table. My husband had to due the Heimlich on me Everyone at the table just stood there in oblivion. I love that man of mine. So with that note I would like see if someone could answer a question (another) of mine. I have stopped trying to find answers or reasons why things happen in books and the Internet because they all seem to say the same thing or never in terminology that I can deicer. The answers to the questions about atrophy that Al so kindly explained and showed to me , I have to say was the first time in 5 months that I actually could understand and relate to. Thank you again Al for showing and Putting those answers in laymen terms.
Now after all that said here is my question:
1. When chewing and swallowing start to become a problem, what seems
to be the most difficult liquid or solid food? The reason I ask is because for years I have always had problems trying to eat certain foods. But recently I am finding it extremely difficult to eat meats (chicken, pork, turkey etc...) and foods like rice or bread. I do not have any problems with drinking but do find myself using a straw to drink beverages (wine, vodka, coke etc...).

2. Is heartburn a symptom of ALS?

3. Are Some days better than others as far as weakness, strength and
and exhaustion?
Some days I feel not great but like the symptoms of gone away or subsided so I think I am Super Woman like I can clean my house, mow the lawn or go back to work (which I miss terrible) but if I do a simple task like vacuuming and dusting I find myself paying the consequences a couple of hours later or the following day I have to struggle to get out of bed or barley have enough energy to get of the couch for two to three days.

4. Does ALS affect a persons posture (hunched over neck /shoulders)?
I cannot stand or sit with a straight back and my neck and shoulders or always slumped over. I seem to be getting the posture of a 85 year old woman. Try everything to stand or sit straight but I just CAN'T.

5. I Know ALS can affect a person breathing but will it cause you to have difficulty when speaking or reading by having to pause
take a deep breath and continue?
In the last couple of days I have found when reading something out loud that I become short winded and have to pause to catch my breath to continue. Now when speaking or talking to someone I do not find myself becoming short winded but do seem to find that I am speaking slower.

Sorry I am so long winded with every post but I feel if I do not explain what I am feeling or my thoughts in such great detail It is a habit I have had since childhood. So If you all feel that I am being or becoming to chatty feel free to let me know and I will TRY to tone it down.

God Bless
Ellisa
 
Hi Ellisa,
I hope everyone had a great Thanksgiving. Sorry to hear about the choking .
I think the reason you may be having to take a breath more often when talking, is reduced lung capacity. I noticed the same thing myself. Which is hard for me because I talk a lot and if I pause to take a breath one of my children will usually jump into the middle of my sentence. ha ha
You were also discussing atrophy. My main area is my legs and arms. I had one of my granddaughters ask me to make a muscle over the holidays, and when I did she said Gramps my muscle is bigger than that. You don't have a muscle. I've also lost about 8 inches in circumference on my calf muscles.
Is heartburn a symptom of ALS? I don't know but I have it bad at times. I also have spasms of the esophagus.
I'm not sure about your other questions.

God Bless
Capt. AL
 
Mt.Pockets,
I am glad to hear that you and your family had a nice Thanksgiving.
Thank you for taking the time to answer a few of my questions. I also have been getting heartburn quite often lately and was just wondering if it is a possible side affect of ALS or just this wonderful Louisiana food causing it HA HA. I am not sure if I am experiencing atrophy or not but have noticed certain things like my rings, watch, and shoes of all things not fitting me the way they use to. My husband has also commented that my skin (muscles) feel like marshmallow almost has if I have lost all of my muscle tone. Now this could be a result of me not being physically active for close to 6 months and just basically being a couch potato. Thanks again for your response it truly helps me try and figure out pieces to this continuous puzzle of mind.

God Bless
Ellisa
 
Hi Ellisa. I'll give you my take on your questions. 1. I don't really have swallowing issues but toast seems to stick in my throat. 2. If you are taking Rilutek you'll probably get some heartburn. Not sure if it is a usual symptom without Rilutek. 3. Oh yea you will have weak days and days when you think Hey I feel pretty good I think I'll do more today and then you'll have a bad day. 4. Yes ALS can affect posture. As the muscles in the neck and upper back atrophy it gets harder to hold your head straight and walk upright. 5. The pausing in mid sentence was one of the signs the Pulmonologist saw that convinced him I was having breathing issues. Next was sitting forward with my hands on my knees. He said it is a classic example of someone trying to get more air in. About being long winded. Do you have to pause in mid sentence? Lol. Just pulling a bit of Friday humor there. Hope this helps. AL.
 
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Thanks again Al
You are truly a wealth of helpful information and a great access to this forum. I now know that any questions are concerns I have about this retched disease I can post them here and no matter what the answers will be you and so many others tell it like it is, there is no beating around the bush here. To answer your question yes I do have to pause in mid sentence but I just think that is because I run my mouth so much I actually forget or run out of things to say LOL. The sitting forward with hands on the knees have not really have not noticed myself doing that until you brought it to my attention. When I see the Doc. on Dec. 5th I will ask if she can recommend a qualified Pulmonologist, to have a pulmonary function test taken to determine my lung capacity. I use to preform lung test on divers for the doctor I use to work, he specialized in Dive medicine. So I know that a PFT is more of a struggle than painful especially if lung capacity is not where it should be. Hey Al, maybe I should change the name of my thread to "Twenty Questions" since I am a endless book of questions. Thank you and bless you and everyone who are replying to my sometimes (all the time) endless questions:


God Bless Ellisa
 
We're all in this together. We do what we can to help and advise others on the same road to God knows where. I'm glad you're not too shy to ask questions. It gives me something to do with my days and nights. LOL. Looking up answers of things that I'm not personally aware of is quite interesting. Ask away. AL.
 
Hi Ellisa. You ask some good questions, usually ones that are on my mind as well! Morrie Schwartz wrote a book about living with ALS. He is the "Morrie" of "Tuesdays with Morrie" fame. His book is not so much about the symptoms but in one chapter he talked about getting heartburn while eating. That makes sense to me. I always had a stomach made of cast iron! Nothing, no matter how spicy or unusual, gave me heartburn. But now I get heartburn if I am over tired, or eat the same size portions as I used to, or just out of the blue, it seems. I suspect it will get worse when they put me on meds but for now I am glad I am still able to chew and swallow.
 
Al,
Believe me I am not shy, even when I was a child I was always wanting and having to know answers to questions. My mom would say and still telling me to this day " I never meet a stranger". Now I hear myself telling my daughter Maggie those same exact words that my mother said to me. It is amazing to watch her growing up everyday she becomes more and more like her mother. Speaking of my daughter Maggie wanting to the know answers to thousands of question a wanting to see it with her own two eyes she has been asking her dad and I about the sun rising all the who, what why, and where questions so last night she asked the two of us if she could stay up all night so she could see for herself the sun rising in the morning. Well we naturally told her sure not thinking a 5 year old could last staying up all night to see a sun rise. Well guess what she did. I woke up around 4:30 A.M. and there was Maggie bright eyed and bushy tailed waiting for the sun to wake up. At around 6:00A.. Maggie finally got to see her first sun rise. To see her face light up with joy when the sun finally began to show its face was priceless. It was one of the special moments between a mother and a daughter. We created a wonderful memory together. But as soon as she saw what she stayed up all not to see it took all but two seconds for her to fall fast5 asleep.


Cindy,
I also use to be able to eat anything with no problem, but now all I have to do is drink a glass of water or simply just get out of bed in the morning (that is when I am able to sleep) and I have heartburn or indigestion. For the past couple of months of been suffering with it almost everyday all day. I find myself taking OTC zantac at least three to four times a day some days.


Thank you both for the reply

God Bless
Elisa
 
i also hunch over especially neck. i am having a tough time keeping seated straight in my wheelchair. i'm glad the wheelchair reclinces to eleviate the hunching over.
 
about swallowing

HI all,

I'm a newbie and not diagnosed, but do work with neurological disorders and swallowing. In answer to you question Liz about swallowing:

Depending on what muscles are being affected will determine what foods you're having difficulty with during intake. Are the solids hard to chew, get stuck in your throat or further down? Does following it with liquids usually help?

You may find that moister foods slide down more easily once muscles start to weaken and you may need to finely chop some items. Sticky foods, will tend to do just that, stick, if your pharyngeal (the muscles in your throat) and esophageal muscles are losing strength and not pushing things down as well (the peristaltic waves to push foods down may be weakening).

Liquids will become a problem with time as will saliva....it's the nature of the beast of ALS, in which all the muscles beccome weaker and you don't have the airway protection, thus you aspirate (any liquids, solids or foreign material going into the airway). Sometimes the innervation is lost for the proctection of cough as well, therefore a person can silently aspirate and liquids can go into the lungs w/o any symtpoms until one gets an aspiration pneumonia. Also, with the weakening of the respiratory muscles, it makes it more difficulty to clear out the aspirate.

Reflux can occur as the lower and upper esophageal sphincters of the esophagus loosen and weaken. Reflux though can occur in many people, it just may happen earlier with ALS or other neurological disorders.

If you continue to have swallowing problems, you need to ask the doctor for a videofluoroscopics swallowing examination done by a speech pathologist, so they can tell what is causing your swallowing problem and advise you on the safest way to eat as well as what textures/consistencies. S/He may also want you to have an esophagram which looks at the esophageal phase of the swallow. Manometry can also be perfomed if they think you have weakness in the peristalsis to measure the strength of your muscles.

The video swallow (VFSS also called a modified barium swallow or MBS) is painless and non-invasive. You will be given various foods and liquids mixed with barium so that it shows on xray, and it's real time and videotaped so we can see everything that happens. An esophagram or barium swallow is the same, only they look at the actual esophagus (tube to the stomach) and give you much more barium. This will give them an idea if you are refluxing and what else may be going on in your esophagus.

For now, if you are having reflux, here are things you can do:

Try to eat smaller meals frequently throughout the day....like six smaller intstead of the usual 3 meals we're taught.

Don't bend over at the waist for an hour after meals.

Don't eat for 2-3 hours before going to bed.

Don't lie down for at least an hour after eating. Sleep with a foam wedge on your bed to keep you elevated. Extra pillows don't help as they bend you at the wrong place and can cause more reflux. You can also elevate the bed at an angle by using blocks to place the head of the bed portion of the bed up about six inches.

Don't wear tight or restrictive clothing around your waist.

Dietary changes:

Try to limit or avoid spicy foods, acidic foods like citrus and vinegars and tomato sauces, fatty foods.

Avoid carbonated beverages, caffienated beverages, chocolate and peppermint, and alcohol.

Avoid smoking.

If you chew gum, that's always good to do after meals or if you feel like you're having heartburn...as long as it's not peppermint! It causes you to swallow more and produce more saliva, both of which will cause more movement in your esophagus and also the saliva can help to neutralize the stomach acid and the enzyme pepcin from your stomach.

In short, a quick lesson on dsyphagia (swallowing disorders).

I hope this helps. Please ask for a swallowing evaluation!

God Bless,

Linda
 
Thanks Linda for the comprehensive lesson on swallowing disorders. Heartburn is a small thing when there is so much else that can, and most likely will, go wrong but I am one of those folks that like to know the WHY of the thing! Cindy
 
Cindy,

As well as heartburn being uncomfortable to say the least and annoying, it can lead to other problems too, so shouldn't be taken lightly. There are drugs you can be on to help decrease the amount and protect your esophagus, etc, in addition to following the reflux precautions I mentioned earlier.

Linda
 
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