Gail, could you describe some of the exercises? It might help if Teri had an idea what "swallow therapy" might entail, and since I haven't been through it, I can't post anything worthwhile. (I would really like to know, too.)

Andrea

Dear Bonnie and everyone else - when I printed out comments from everyone, I placed them next to my son's bed (he was sleeping) and when he woke up he pointed to Wayne's comment about adult children taking advice and he smiled and gave me the "thumbs up" sign. So I continue to do that. Gail - your post to Bonnie (Worried Mom) helped me, too and am going to see what we can do about pain management while waiting for our "pain management team" to decide what to do. My son has an appointment with the doctor that treats his depression on Monday so hopefully, that will help, too. He just got the news yesterday from Social security disability that his claim was denied because he was not depressed enough nor disabled enough to qualify and that we could hire an attorney to pursue it. I'm trying really hard to summon up the "glass half full" side of my personality and see the good in the assessment that he's "not disabled nor depressed enough". I've always believed that there is always something we can do about whatever situation we are in - so I am going with that.

Hi Andrea --

To start with, the swallowing exercises are developed for each individual case, that is, ones that Barry did might not be any use (or even good) to otehrs. Each person should get his or her own test and get exercises specifically designed to address the problems identified.

In Barry's case the barium swallow test showed lingual weakness (weakness of tongue muscles), weakness in two of the muscle groups which move food to the back of the throat and into the esophagus, and his epiglottis was contracted and did not close properly (thus the risk of aspiration of food or liquid into his lungs). In fact, they found he had "silent aspiration" of thick liquids (that is, he was unaware of this and did not give the same reflex cough response we might do for food getting into our windpipe, this possibly due to nerve damage or numbness of the area after radiation). In fact, just after the end of treatment he did get an aspiration pneumonia which put him into hospital for 3 days. They did not find any strictures or ulcers in his throat or esophagus.

To give you an idea of what the exercises were for him, they included:

1) lingual stengthening: pushing tongue against tongue depressor held in front, and to both sides (with fingers against cheeks) for a certain count or until fatigue is felt. Goal is 10 reps 3x a day. Stop if any pain.

2) suction to strengthen throat muscles: using a straw, pick up a piece of tissue paper or cotton ball by mouth suction and hold for count of 5. Move up to Post-it note size paper, with the goal was to get to 3 x 5" index card size and hold for 10. Again, do 10 reps 3x a day. This was very hard to do at first, it took some months to get to index card goal. Barry still repeats this exercise once a day as it was the most difficult.

3) "Masako" swallow: when drinking a liquid, hold tip of tongue between teeth and try to swallow this way and repeat several times a day.

4) Effortful swallow -- Do at mealtime or when drinking, try to swallow as hard as you can -- really push against roof of mouth -- should feel muscles contract and larynx move upwards as you hold fingers lightly against throat.

5) make a "siren" noise, while holding fingers lightly against throat. Should feel larynx move and throat muscles tighten. Only 3 times for 3 seconds max as can strain vocal cords.

Barry did these for six weeks and then went in to see therapist again. If he had been having a lot of problems or no progress, the migth have done another barious study. However he was getting better so he was simply told to contnue and check in if there were issues or questions.

Again, I need to emphasize that these are among the types of exercises which a therapist might prescribe, they were specifc fr Barry's status and others need a full consult with a speech/swallowing therapist before doing any of them! These therapists are not too hard to find, for example, both our local hospitals have them and can also do the barium tests as well.

Gail

Gail, thanks for giving us these examples of swallowing exercises. It helps me to understand the types of exercises that would target a specific group of muscles used in swallowing, and it also helps me understand the need to KEEP SWALLOWING through my upcoming radiation treatment so I don't have to spend the rest of my life making up for what I could have saved!

Andrea

Anne Marie,

You may want to get with/e-mail Gary Allsebrook and ask his advice about your son's SSDI claim. Gary is the only one around here that I know of that was approved for SSDI. Let me know how your appeal goes, please.

Good Luck
Tim Stoj

Anne Marie,

I represented a former emplyee once at a SSDI hearing and it's not intimidating at all. It's just a matter of conveniencing the panel (3 people when we did it) that the person is unable to work for whatever reason. If you can't afford to hire an atty consider doing it yourself. What have you got to loose at that point?

Thanks David and Gary for the good ideas. I'll suggest them to my son tomorrow when I see him. Today he ate his first sandwich out in a long time at a sub restaurant we know as "Nixon's Deli". They steam their buns making them very very soft and it was the smallest size and he warned me right away that he'd probably only be eating 1/2 of it but "I can't believe he ate the whole thing!" I saw him wince at one point when he swallowed so I know he still hurts a lot but it made me really feel like celebrating and I was so proud of his progress and his effort! And I am so very grateful for all the help and compassion we've received and continue to receive at OCF.

Anne-Marie {and Stoj] My husband was approved for SSID on the first try-however the first try took several months of long phone calls between me and the case worker, many, many documents from his Doctors, etc. One day, I put John on the phone with the SSDI case worker and told her to talk to him. After a 15 minute conversation of her not being able to understand most of what he was saying, she agreed that he could no longer fullfill his job responsibilities. I also invited her to come to our house and talk to him "eye ball to eye ball", She decided it wasn't necessary. It takes persarverance to do this, because there are many people trying to scam the system. Legitamtate claims are worth the fight. Amy

Hi Anne-Marie --

First, INSIST that your son get PROPER pain management NOW. The standard of care for head and neck cancer treatment and post-treatment includes pain management (often opiates, as noted above) -- waiting two weeks for some "team" to come up with a plan is ridiculous, there are clear guidelines available from NCCN and also, the extensive literature on cancer care and it doesn't take any two weeks to find these out.

Secondly, there is quite a bit of existing peer-reviewed literature demonstrating HNC post-treatment disability -- one of the more recent is Taylor et al (2004) where they found over 50% of treated oral cancer patients were too disabled to return to work. The abstract is at:
http://archotol.ama-assn.org/cgi/content/abstract/130/6/764

You can also follow up papers in which this work was cited and also, do a google for "diability and head and neck cancer" for other papers.

These should help bolster your argument with SSDI.

Gail

Hello Ann- Marie,
What great advice from Gail. Pain is one thing you CAN NOT let get ahead of you. Also please use softeners to protect against constipation.
I also recieved SSI for about 4 yrs. The only thing is that when I qualified it was during my Leukemia dx. and I was up for review annually and right when they were sending me back to work I was dx with the Nasopharynx cancer which extended me another 2 yrs. It is extremely difficult to qualify for the first time, I was one of the lucky ones. I wish you luck and strength in what is a very difficult time for you and your son.
Mark D.