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Joined: Oct 2008
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Hello, I am a social worker working with an older gentleman whose tongue was removed as part of his cancer treatment. He lives alone and I am trying to help him come up with a way to communicate via the telephone if he needs to call someone in an emergency. Any suggestion must be very user friendly (he does not want to use anything "technological") and very affordable/free as he has no income at this time. Suggestions are welcome. Thank you.

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Lisa,

How long ago was his surgery? I still have a "tongue-stub", so maybe I'm off-base here, but I'm told I speak very clearly over the phone. Some letters/sounds are difficult to impossible, but I manage to get myself understood in some way by spelling, description, or just using a different word, etc. If his surgery wasn't long ago, he may be able to manage somewhat with healing and practice.

Lani


SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
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He can use TEXT messaging on a cell phone to another cell phone -- Don't know if 911 will accept it...

It is also possible to send text messages to internet addresses, so if 911 has always-on email, that would work.

He can make up his Help messages ahead of time and store them in the Saved Messages area of the phone, ready to launch.

I know 911 voice calls can be made from unsubscribed cell phone, but I don't know about text. ADDED -- Just checked with Kitsap county 911 here in Washington and 911 Center can't receive text or timely email, but that may not hold true in other jurisdictions.

Next alternative is one of those keyboard sets for the hearing impaired, where one can type msg to operator and she calls number and speaks msg.

There are a number of services that market Call Buttons that go to center to call 911 or whoever's on list -- They might cost money, however.

Another way, seen in senior trailer parks, is a daily sign in window stating "I'm OK" for a while -- If neighbors don't see sign at the right times, they do a welfare-check.



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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Hmm, just thought of another way -- Have someone set up his telephone presets for a third party and 911, with his number in TP's phone Caller ID shows it's him. If they get a call, even without sound, they will know it's him; 911 will have the wired phone in data base (maybe they can link a cell number to an address by registration.

Clearly, even if he can't speak and doesn't even have a trach-device, he can still make noises to indicate trouble -- Pre-agreed noises could even mean different things.

Again, an unsubscribed cell phone can call 911 for free -- Just get a phone from spousal abuse center or even from someone upgrading to a new phone.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Jun 2007
Posts: 221
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Here where I live if you dial 911 and don't speak they will send the police to your home to check on you. This is of course calling from a land line in a location that has the enhanced 911 system. This is one of the main reasons that I have not given up my land line. If I dial 911 they know exactly who I am and where I live. No time is wasted trying to ping my cell phone to get a location.

If you call and hang up, they will call back. If they do not get an answer they will send a police officer to your home to check and see what is going on.

I'd find the non emergency number for the police department where he lives. Give them a call and explain the situation and ask if the situations above apply to that locality. They may also have suggestions for what to do if an emergency should occur and he need to call for help.

Good luck!

Joy


CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
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What about those necklaces or bracelets that people wear to press a button to call for help if they fell or had an emergency somewhere away from the phone? Perhaps a service club - Lions, Kinsmen, etc would be able to handle the cost of such a device for this gentleman. I know several seniors with hip or heart problems who use these - work great.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Lisa:

As a telephone company employee, I do know there is a place for help. Im sorry but dont have much info as that isnt my department.

If your gentleman uses Verizon for phone service they have whats called the VCCD. Its the Verizon Center for Customers with Disabilities. There are many different devices out there to help those customers who have speech and hearing impairments. Look in the the front of your Verizon phone book and call them for him. Sometimes he may need special equipment like a tty, which is at little or no cost to the customer. There are even special operators who will help him make calls with him typing and the operator 'interpreting' for the person he calls.

Glad you asked this question, it will help many others like your client.







Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Like Christine said, check with the phone company about a TTY (Text) phone and TTY/TDD Service. I have a deaf uncle who has one.


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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Lisal, I read your request and my Mother has a button she wears on a necklace to call for help but that cost about $30.00 per month. There might be a local church who would pick up that tab if asked and advised the situation.

I want you to know that You will find a way because you go that extra mile in helping people and I just wanted to say thank you for doing the fine job you are doing by going above and beyond! Thanks, Angel


SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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If he has some help with this, he can contact (via you)the local Fire Department, the 911 operators, the local police and have a note/alert placed in his file. If he ever calls 911 they need to respond immediately. They will put in the file that he has no way to speak and they will just respond. I know that we have friends who's daughter has a trach and they had to contact those local services to let them know that if their address comes up- it has to be immediate response.
Jenn


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
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I just spoke with a 911-training director here in WA -- She said that, just like unsubscribed cell phones calling 911, unsubscribed land lines or wired or conventional telephones should also work to 911 (It's apparently a federal requirement).

Your cared-for person may need to make arrangements with the serving wire-line telephone company and there may be a one-time service charge to set up the service, but it seems it is possible to have 911 access from a home telephone instrument without having actual telephone service. Call the telephone company and don't take no for an answer.

A speaking person will have to make a 911 call, quickly identifying the call as a test, to verify that the phone company data base (to which 911 apparently gets access) is showing the correct address.

Apparently, there is no provision to register an address for a cell phone -- The telco provides the fixed address for wired phones and the cell phones are located by GPS (if the cell phone has it and it's working).


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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