Swallowing exercises

EVERYONE GOING THROUGH OR ABOUT TO BEGIN TX:

I know its beat in your head, but I'm gonna beat it some more:

DO YOUR EXERCISES OR YOU WILL SUFFER CONSEQUENCES

If these had been available to me 12 yrs ago more than 85% of my problems wouldn't exist, and 1 may not exist. My head moves and turns like the worst stiff neck you've ever had(doesn't feel like that, just looks like that), of course I may have avoided the Dysphagia and Aspiration pnuemonia and still enjoying food, I would definitely be able to open my mouth wider than 1 finger(middle) and one tip of finger(pointer), dental issues that you all will deal with but easier for you do to mouth opening.

You don't want to have to live like this, I have grown acustom to it and long ago accepted it, but now I am trying to fight to reverse what you all can avoid. So please, there is so much advice we all give, like fluids, fluids, fluids(very important to during tx) but if you heed only one:

DO YOUR SWALLOW EXERCISES!!!!!!!!!!

Getting off my pedastool now, someone elses turn

Love to all and God Bless,

Rachel
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Comments

  • wolfen
    wolfen Member Posts: 1,324 Member
    Thanks, Rachel

    My hubby has not reached the point of H&N rads or possible surgery yet, which is when I assume swallowing exercises will be mentioned. He can still drink things like Glucerna or milk, things that are thicker than water. Only drinks a small amt. of water with his meds as water tends to go back up his nose. But I am constanly stressing the fact that he needs to swallow for as long as possible. So I will drum this info. about swallowing exercises into his head also.

    Luv,

    Wolfen

  • Billie67
    Billie67 Member Posts: 898
    wolfen said:

    Thanks, Rachel

    My hubby has not reached the point of H&N rads or possible surgery yet, which is when I assume swallowing exercises will be mentioned. He can still drink things like Glucerna or milk, things that are thicker than water. Only drinks a small amt. of water with his meds as water tends to go back up his nose. But I am constanly stressing the fact that he needs to swallow for as long as possible. So I will drum this info. about swallowing exercises into his head also.

    Luv,

    Wolfen

    Rachel
    You are so right! I'm thankful that I've done the exercises all thru trt and continue to do them now. It's not easy and I do have some things that are more difficult than others to swallow but I'm working on it. Just saw my ENT/surgeon today and it's possible after seeing the cd from my last swallow study that I may have To have some dilation done too. Regardless, I will keep up on my exercises.

    Wolfen,

    Swallowing is important but right now your hubby needs to do his opening exercises so he doesn't get trismus. It can show up out of the clear blue and some who get it can't get back to where they were before treatment. People literally feel fine one day and the next day can't open their mouths, no warning.
    There, I've given my friendly lecture :-)
    Billie
  • phrannie51
    phrannie51 Member Posts: 4,716
    Keep on beating that message, Rachel.....

    My Dr.'s did not say one word about swallowing exercises....nor did they mention the neck and jaw exercises until I brought them up to the Radiology PA....She was a barrel of information, but not until I said something.  I learned about them on HERE first....and that's why I brought it up to her....my jaw was getting tight. 

    It just seems that there are so many facets to radiatinon and the possible ramifications, that the Dr.'s either forget to mention things, or it may be that some simply don't know.

    p

     

  • wolfen
    wolfen Member Posts: 1,324 Member

    Keep on beating that message, Rachel.....

    My Dr.'s did not say one word about swallowing exercises....nor did they mention the neck and jaw exercises until I brought them up to the Radiology PA....She was a barrel of information, but not until I said something.  I learned about them on HERE first....and that's why I brought it up to her....my jaw was getting tight. 

    It just seems that there are so many facets to radiatinon and the possible ramifications, that the Dr.'s either forget to mention things, or it may be that some simply don't know.

    p

     

    Thank You, Billie

    Like Phrannie, none of the doctors that he sees have mentioned any kind of exercises. Will check this out at next appt.

    Luv,

    Wolfen

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    I hear you

    Hi Rachel,

     

    So you are still learning, me too.

     

    Before I started treatments my wife Candy found this site and filled me to the brim with information (Skiffin and other “wise ones” have been busy dispensing the abc for fighting cancer).  The three main things I took away were:

    1. drink water, drink water, drink water, stay hydrated.  I started drinking water a good month before treatment started and I haven’t stopped.  There better be a pay off to all this drinking, besides a stronger bladder.
    2. swallow, swallow, swallow.  My sips and swallows got pretty small, but I kept at it.  Also, having the swish and spit (water, soda salt mixture), along with my favorite gag and dry heave utility room sink helped too.  Caregivers are the saints around us, no normal person could stand to listen without dialing 911.
    3. The third is kind of corny, I was afraid if I lost too much weight I would have to get fitted for a new mask.  There are rumors that it happens, but I never met anyone who lost so much weight their head wobbled around in the mask.  If anything my nose is now flatter than it was.  I know my teeth don’t clamp together exactly like before.

     

    So all you newbies, listen to Rachel she is on to something.  Additionally, a big shout out thanks to all the ‘wise ones” who traveled this road earlier, I have read many of your threads and take your advice to heart and hope you are all well.

     

    Matt

     

    I lost 45 pounds.

  • yensid683
    yensid683 Member Posts: 349
    Amen!

    Rachel, you are SO very RIGHT!!!!

    I'm but 8 months post rads and remember my wife brow beating me about swallowing, at times it seemed that she was more drill sargeant than supporting wife and caregiver, but she kept after me, "do you want that PEG tube forever?"  Like Phrannie though, none of my doctors said ANYTHING about swallowing or jaw exercises.  I had to learn it from people on this site, from friends and neighbors who had relatives ride this bus.  Hell, it was almost 3 weeks into rads before they sent me for a swallowing study.  The speech therapist said that I was doing everything exactly right, thanks to my long suffering and incredibly patient wife.

    there were times when I could barely stand to swallow, water, milk, a spoon or two of grape jello (the only flavor that I could stand) but I kept at it.  At this point, I can swallow just about anything, I've gotten all of my taste back, though sour and bitter are still intense - a consequence of the very low saliva - but I can eat!!!!

    I do stretches for my neck dissection (mid october) and do the 'open wide' as well.  There has always been a slight stiff feeling in the jaw muscles, but the stretching helps. 

    Thanks for the reminders, while I feel so bad for you, I'm glad that I listened to my Lori. 

     

    Peter

  • peggylulu
    peggylulu Member Posts: 375
    CivilMatt said:

    I hear you

    Hi Rachel,

     

    So you are still learning, me too.

     

    Before I started treatments my wife Candy found this site and filled me to the brim with information (Skiffin and other “wise ones” have been busy dispensing the abc for fighting cancer).  The three main things I took away were:

    1. drink water, drink water, drink water, stay hydrated.  I started drinking water a good month before treatment started and I haven’t stopped.  There better be a pay off to all this drinking, besides a stronger bladder.
    2. swallow, swallow, swallow.  My sips and swallows got pretty small, but I kept at it.  Also, having the swish and spit (water, soda salt mixture), along with my favorite gag and dry heave utility room sink helped too.  Caregivers are the saints around us, no normal person could stand to listen without dialing 911.
    3. The third is kind of corny, I was afraid if I lost too much weight I would have to get fitted for a new mask.  There are rumors that it happens, but I never met anyone who lost so much weight their head wobbled around in the mask.  If anything my nose is now flatter than it was.  I know my teeth don’t clamp together exactly like before.

     

    So all you newbies, listen to Rachel she is on to something.  Additionally, a big shout out thanks to all the ‘wise ones” who traveled this road earlier, I have read many of your threads and take your advice to heart and hope you are all well.

     

    Matt

     

    I lost 45 pounds.

    Matt

    Well Matt now you have met someone who's head wobbled around in their mask ! They talked about making me a new mask but never did . I don't know why they didn't . I too worried that I would lose so much weight that they would have to make me a new one and I did but they didn't ! Lol The last 2 weeks I just had to make sure to lie very still. I had probably lost around 45 or 50 pounds at that time . I have lost another 15 to 20 pounds since tx but I had it to lose. Hope I can lose 20 more while nothing taste good and then hope I get my taste back and not the weight . Wink

    Peggy

  • Billie67
    Billie67 Member Posts: 898
    peggylulu said:

    Matt

    Well Matt now you have met someone who's head wobbled around in their mask ! They talked about making me a new mask but never did . I don't know why they didn't . I too worried that I would lose so much weight that they would have to make me a new one and I did but they didn't ! Lol The last 2 weeks I just had to make sure to lie very still. I had probably lost around 45 or 50 pounds at that time . I have lost another 15 to 20 pounds since tx but I had it to lose. Hope I can lose 20 more while nothing taste good and then hope I get my taste back and not the weight . Wink

    Peggy

    Peggy
    I too got pretty wobbly in my mask and they said if I lost even another pound they were going to make me a new one. I could move my head around pretty good and I was also scared that the wrong stuff might start getting radiated. I did end up losing a couple more pounds but I was so close to the end that they let me slide but told me to hold very still. They told me that about 20% of their patients need a new mask before treatment is over.
    Just thought I'd share :-)
    Billie
  • George_Baltimore
    George_Baltimore Member Posts: 303
    yensid683 said:

    Amen!

    Rachel, you are SO very RIGHT!!!!

    I'm but 8 months post rads and remember my wife brow beating me about swallowing, at times it seemed that she was more drill sargeant than supporting wife and caregiver, but she kept after me, "do you want that PEG tube forever?"  Like Phrannie though, none of my doctors said ANYTHING about swallowing or jaw exercises.  I had to learn it from people on this site, from friends and neighbors who had relatives ride this bus.  Hell, it was almost 3 weeks into rads before they sent me for a swallowing study.  The speech therapist said that I was doing everything exactly right, thanks to my long suffering and incredibly patient wife.

    there were times when I could barely stand to swallow, water, milk, a spoon or two of grape jello (the only flavor that I could stand) but I kept at it.  At this point, I can swallow just about anything, I've gotten all of my taste back, though sour and bitter are still intense - a consequence of the very low saliva - but I can eat!!!!

    I do stretches for my neck dissection (mid october) and do the 'open wide' as well.  There has always been a slight stiff feeling in the jaw muscles, but the stretching helps. 

    Thanks for the reminders, while I feel so bad for you, I'm glad that I listened to my Lori. 

     

    Peter

    Matt, make that three people

    whose head wobbled.  I went from 220 down to 129.  I read some of my docs notes that said I was down to 119 but I don't ever remember it  being that low so it may have been a typo.  They never made another mask but you can bet, I laid perfectly still during the rads.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    These things ain't easy!

    I went to the Speech/Language Pathologist today and was evaluated. There are some remaining swallowing issues from the surgery (neck and shoulder too which will need PT). I was given the swallowing exercises as well as jaw stetches etc. Dang! Some of the swallowing exercises are hard! But regardless, I'll be doing them religiously.  

    Keep up the hard work Rachel... if you can do it with the challenge you had in front of you, then anyone can :)


    "T"

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    fishmanpa said:

    These things ain't easy!

    I went to the Speech/Language Pathologist today and was evaluated. There are some remaining swallowing issues from the surgery (neck and shoulder too which will need PT). I was given the swallowing exercises as well as jaw stetches etc. Dang! Some of the swallowing exercises are hard! But regardless, I'll be doing them religiously.  

    Keep up the hard work Rachel... if you can do it with the challenge you had in front of you, then anyone can :)


    "T"

    T, may i ask what kind of

    T, may i ask what kind of problems u r having with your shoulder?  When my cancer recurred and i had to have neck surgery, (laryenjectomy) my shoulders have been messed up.  i am unable to lift them very high and need help with dressing and showers.  i attended pt for a couple months twice a week but was told they could do no more.  i continue  to do the exercises at home b/c i don't want to give up on my arms.  i was told i have permanent nerve damage to the scapula but still i refuse to give up.  i'm just wondering if this is the same problems your r having.  thanks for sharing.

    God bless

    deb

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    T, may i ask what kind of

    T, may i ask what kind of problems u r having with your shoulder?  When my cancer recurred and i had to have neck surgery, (laryenjectomy) my shoulders have been messed up.  i am unable to lift them very high and need help with dressing and showers.  i attended pt for a couple months twice a week but was told they could do no more.  i continue  to do the exercises at home b/c i don't want to give up on my arms.  i was told i have permanent nerve damage to the scapula but still i refuse to give up.  i'm just wondering if this is the same problems your r having.  thanks for sharing.

    God bless

    deb

    Shoulder Issues

    Hi Deb,

    Sorry to hear you're having shoulder issues. I can sympathize. I had a selective neck dissection, left side. I have weakness in my left arm and shoulder that, like yourself, makes it difficult to raise my left arm without pain. It's as if the muscles have been disconnected. If I shrug my shoulders you can see a distinct difference in the way my traps contract. It's as if my left trap doesn't work. While it was getting a little better, it's now backslid since I started treatment. My neck muscles are stiffining up a bit and I developed a very sharp burning/stabbing pain in my left sholder blade area. They want to get me into physical therapy so I can continue to work the area through treatment. 

    It does sound similar to what you're experiencing but my ENT/Surgical Oncologist feels it will come back in time. Time and effort will tell.

    "T"

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    fishmanpa said:

    Shoulder Issues

    Hi Deb,

    Sorry to hear you're having shoulder issues. I can sympathize. I had a selective neck dissection, left side. I have weakness in my left arm and shoulder that, like yourself, makes it difficult to raise my left arm without pain. It's as if the muscles have been disconnected. If I shrug my shoulders you can see a distinct difference in the way my traps contract. It's as if my left trap doesn't work. While it was getting a little better, it's now backslid since I started treatment. My neck muscles are stiffining up a bit and I developed a very sharp burning/stabbing pain in my left sholder blade area. They want to get me into physical therapy so I can continue to work the area through treatment. 

    It does sound similar to what you're experiencing but my ENT/Surgical Oncologist feels it will come back in time. Time and effort will tell.

    "T"

    T, thank you for sharing.  I

    T, thank you for sharing.  I pray your movement will return completely.  I keep hoping that as i exercise at home mine will get better. I don't have any pain, I just have the lack of mobility.  My neck is also affected.  This happened when they did my neck surgery.  they damaged the nerve.  keep up the good work and good luck with Pt.  take care and thanks again.

    God bless,

    deb

  • peggylulu
    peggylulu Member Posts: 375
    Billie67 said:

    Peggy
    I too got pretty wobbly in my mask and they said if I lost even another pound they were going to make me a new one. I could move my head around pretty good and I was also scared that the wrong stuff might start getting radiated. I did end up losing a couple more pounds but I was so close to the end that they let me slide but told me to hold very still. They told me that about 20% of their patients need a new mask before treatment is over.
    Just thought I'd share :-)
    Billie

    Billie

    Thanks for the reply , that sounds exactly like the way it went with me !! It's nice to know I'm not the only one and I too was so worried that I might not be getting the right tx !

    Peggy

  • peggylulu
    peggylulu Member Posts: 375

    T, thank you for sharing.  I

    T, thank you for sharing.  I pray your movement will return completely.  I keep hoping that as i exercise at home mine will get better. I don't have any pain, I just have the lack of mobility.  My neck is also affected.  This happened when they did my neck surgery.  they damaged the nerve.  keep up the good work and good luck with Pt.  take care and thanks again.

    God bless,

    deb

    debbiejeanne

    I'm beginning to think this must happen most of the time because I have most of the same issues that you are having . I lost so much weight so fast that my shoulder on the side of my surgery feels like there is nothing there but skin and bones . :(

    Peggy

  • peggylulu
    peggylulu Member Posts: 375
    fishmanpa said:

    Shoulder Issues

    Hi Deb,

    Sorry to hear you're having shoulder issues. I can sympathize. I had a selective neck dissection, left side. I have weakness in my left arm and shoulder that, like yourself, makes it difficult to raise my left arm without pain. It's as if the muscles have been disconnected. If I shrug my shoulders you can see a distinct difference in the way my traps contract. It's as if my left trap doesn't work. While it was getting a little better, it's now backslid since I started treatment. My neck muscles are stiffining up a bit and I developed a very sharp burning/stabbing pain in my left sholder blade area. They want to get me into physical therapy so I can continue to work the area through treatment. 

    It does sound similar to what you're experiencing but my ENT/Surgical Oncologist feels it will come back in time. Time and effort will tell.

    "T"

    "T"

    I had to ask for PT and then I didn't go during treatments as I didn't have the energy . I however did go a few weeks after treatment when I got my strength back. Here's hoping you will do better by going to PT during treatments.

  • peggylulu
    peggylulu Member Posts: 375

    Matt, make that three people

    whose head wobbled.  I went from 220 down to 129.  I read some of my docs notes that said I was down to 119 but I don't ever remember it  being that low so it may have been a typo.  They never made another mask but you can bet, I laid perfectly still during the rads.

    George

    Wow that is a lot of weight to loose ! I have lost 65 and thought that was a lot ! Have you been able to gain some of it back ? I tried to lay perfectly still also but it made me so nervous with all the mucus I always felt that I just HAD to swallow ! I hope I don't gain the weight back because I really needed to loose some weight for the last 50 years !

    Peggy

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    peggylulu said:

    debbiejeanne

    I'm beginning to think this must happen most of the time because I have most of the same issues that you are having . I lost so much weight so fast that my shoulder on the side of my surgery feels like there is nothing there but skin and bones . :(

    Peggy

    peggy, i'm sorry to hear you

    peggy, i'm sorry to hear you are also having troubles.  i pray it won't be permanent.  thanks for sharing.

    God bless,

    deb

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435

    peggy, i'm sorry to hear you

    peggy, i'm sorry to hear you are also having troubles.  i pray it won't be permanent.  thanks for sharing.

    God bless,

    deb

    Deb and T,
    My shoulder, right

    Deb and T,

    My shoulder, right side, is bad. When I am in shower I have to climb the wall with my hand to shave my under arms. Getting dressed not so much, but I try to put hair in pony tail and that takes like 5 mins instead of couple and curling my hair when doing right side have to rest my elbow on wall. The new exercises for speech are helping. The ones to stretch the cervical, you are supposed to lay on. Flat surface, but I can't lay down for hour after eating by peg so sometimes I do them sitting up and when I reach around head and pull to shoulder, when I put arm down to switch sides it cracks all the way down, and I have noticed a little more movement in shoulder with that release. So try that sitting up once in a while, it works.

    As far as weight goes I lost 70lbs in 9 months of treatment, and sad to say once I figured out how to eat I slowly put it back on. First, when you body is in starvation. Mode like mine was due to severe food aversion, when you start eating as a defense your body stores as fat in case you starve again, and then the rest was bad marriage and depression thinking I was stuck. I have since lost 320lbs, well 260 belong too ex husband, and 60 to me! So be careful when you eat normal. Eat well, not what's there. Just a tip!

    Take care,

    Rachel

    T, hang in there praying everyday for you, no negative thoughts like what happens after initally winning, you start "Living" that's what you told me!
  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435

    peggy, i'm sorry to hear you

    peggy, i'm sorry to hear you are also having troubles.  i pray it won't be permanent.  thanks for sharing.

    God bless,

    deb

    Deb and T,
    My shoulder, right

    Deb and T,

    My shoulder, right side, is bad. When I am in shower I have to climb the wall with my hand to shave my under arms. Getting dressed not so much, but I try to put hair in pony tail and that takes like 5 mins instead of couple and curling my hair when doing right side have to rest my elbow on wall. The new exercises for speech are helping. The ones to stretch the cervical, you are supposed to lay on. Flat surface, but I can't lay down for hour after eating by peg so sometimes I do them sitting up and when I reach around head and pull to shoulder, when I put arm down to switch sides it cracks all the way down, and I have noticed a little more movement in shoulder with that release. So try that sitting up once in a while, it works.

    As far as weight goes I lost 70lbs in 9 months of treatment, and sad to say once I figured out how to eat I slowly put it back on. First, when you body is in starvation. Mode like mine was due to severe food aversion, when you start eating as a defense your body stores as fat in case you starve again, and then the rest was bad marriage and depression thinking I was stuck. I have since lost 320lbs, well 260 belong too ex husband, and 60 to me! So be careful when you eat normal. Eat well, not what's there. Just a tip!

    Take care,

    Rachel

    T, hang in there praying everyday for you, no negative thoughts like what happens after initally winning, you start "Living" that's what you told me!