Posted by: snowie ®
02/19/2008, 07:55:08
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Hi guys,Just thought I'd ask again ..... anybody know of any good amplified phones by ANY manufacturer ? I did do a search as I know this subject comes up alot but not much came up, will try again, Thanks, Snowie
AB SD, Devon, UK
Modified by snowie at Tue, Feb 19, 2008, 12:09:39
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Posted by: kat ®
02/19/2008, 14:27:29
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Hi SnowieI never succeeded in finding an amplified telephone, so I got in touch with social services and they provided me with a text phone and use the deaf relay service (typetalk). Fine for when you have no voice or you can use it as a normal phone when your voice is good. This works well for me, the only problem is for internal calls at work, this does not work for that. But all staff know me and know that if they phone me they will have to be in a quiet place to hear me over the phone. If you want any more info on this let me know, I have had a lot of dealings with the deaf community over the years so know quite a bit about text phones. Kat
AB/AD SD? AB SD? Who knows?
Blackpool, Uk
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Posted by: snowie ®
02/21/2008, 04:31:36
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Hi Kat,Thanks for your reply, that's strange that you couldn't find anything in the UK either ... there must be something out there other than a text phone. I spoke with our area contact perosn for Access to Work, and even he didn't know of anything, other than to try BT, as they have various equipement for hard of hearing etc. I will do another search. I need to find something soon, as I'm suppose to get my application in within 6 weeks of starting this new job. By the way, I was also interested in how you described you're SD, sounds a bit like me!! .... I thought it was AB SD, which I was diagnosed with about 4 years ago and have been getting regular botox injections, but recently saw a different consultant that thinks I have AB/AD mixed SD, so like you ... who knows!! ...... Out of interest where do you go for your injections ? ...I was getting mine in London, but have just moved to devon, and thought I would find someone local, but no such luck, closest place is still London! ... unbelievable really ... there is someone in Plymouth that can do the AD injections, but not the AB. ... oh well ...... on we go ...... thanks for your reply, it was nice to hear from you, Best wishes,
Snowie,
Devon, UK
Modified by snowie at Thu, Feb 21, 2008, 04:36:50
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Posted by: kat ®
02/21/2008, 06:05:07
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Hi SnowieI'm still not even officially diagnosed with SD...I have had whatever I have for nearly 9 years now and go from the diagnosis of psychological to neurogical to psychological to neurological. I have had a few treatments with botox, some successful, some not as successful. The most successful one was where he injected all 4 muscles, but they are still undecided on me. I did have some injections in london with Mr Brookes years ago, but as he wasn't convinced either he decided that I should see someone nearer home....ie not cost him any more time or money! So now I am seeing Mr Swift in Liverpool, who is more optimistic that they can help me. The first injections went well, the last lot I was swallowing too much for him to be able to get the needle in the right place for the AB injections, so I ended up pretty much mute for over a month. I am back there again at the end of march. Thinking back, years ago, I tried a phone in the BT shop that was amplified, but all it picked up was my breathing. I have very little voice for it to pick up on and amplify. So you may well find something there, but for me it wasnt an option. Keep me posted on how you get on, I too am looking for a new job and have an interview in 2 weeks, so IF I am successful I will be looking for some help too. Kat
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Posted by: snowie ®
02/22/2008, 04:50:28
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Hi Kat,9 years is a long time not to have a definite diagnosis! ... I will be interested to hear what the final diagnosis is ? ... but it sounds to me that if the treatment was sucessful then surely it must be SD ? ... ... I really hope your next injection works for you ... Re: BT, I've checked out the telepohones, but there doesn't seem to be much there perhaps I'll just have to stick with a platonics 22. There doesn't seem to be much choice out there ... I'll keep my fingers crossed for your interview in 2 weeks time, let us know how you get on. By then I might have found a good amplified telephone that I can recommend! .. By the way, Mr Brookes is the consultant who administers my botox injections in London, very small world isn't it .. I am also helping to set up a support network with a Trustee of the UK Dystonia Society, if you would like to know more or just want to chat, feel free to email me on debbie.skerrett@ntlworld.com. I don't have email at the moment at home, as I've just recently moved to Devon, and haven't got it set up yet, but I pick up my emails every couple of days. Take care, Snowie
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Posted by: TMK ®
02/25/2008, 08:46:44
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Snowie-I also have AB SD and had a terrible time with the phone - as most people with SD do! I was very lucky to find a phone that has been working well for me. It is the Ameriphone XL25s. It isn't cordless and is designed for people with hearing and sight issues too. The buttons are huge and sometimes I feel like a toddler playing with a "grown up" phone. However, it amplifies the outgoing voice and people can hear me! It also helps me feel much less stressed about talking on the phone. I have no idea if this is available in the UK but I do know it is here in the US. I did extensive research on phones before getting this one and it seems that there are very few phones which amplify the outgoing voice around. Good luck with your phone search! TMK
ABSD
Dallas
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Posted by: snowie ®
02/28/2008, 05:50:51
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Hi TMK,Thanks, that made me chuckle at the thought of feeling like a toddler playing with a 'grown up' phone! ... great so I have a choice between a toddler phone and a batmobile phone!:) It's amazing to think that there is such little choice for people that need to amplify their voice, I'll check it out, thanks, Snowie
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Posted by: TMK ®
03/02/2008, 18:33:59
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Snowie-I agree that there needs to be better options out there for those of us with SD. Unfortunately, not many people know about SD or understand it! I keep trying to do my part by basically telling everyone I meet about SD and giving them information. Let's keep spreading the word! TMK
ABSD
Dallas P.S. Even though my phone has HUGE buttons - I love it!!!!!
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Posted by: spasdysian ®
03/13/2008, 03:20:26
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To TMK or anyone that has used Ameriphone XL25s that TMK mentioned, with Ameriphone XL25s, will it work if I just "whisper" and then the other party will be able to hear me?I have AB/SD and I can "whisper" like normal people. Thanks.
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Posted by: TMK ®
03/13/2008, 08:44:11
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I haven't tried whispering but I can try it out and get back to you.Are you getting treatment for your ABSD? Have you had Botox? Speech therapy? I always like to know what others with ABSD are doing. TMK
ABSD
Dallas
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Posted by: spasdysian ®
03/13/2008, 16:38:32
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Hi TMK, I had my first BOTOX shot (one side) on 03/11/2008 after having AB/SD un-diagnosed for 20 years. The doctor first used EMG to find the spot and then I think he gave me 5 to 6.25 units. It has been more than 24 hours since I got the shot, I am not feeling any side effects and at the same time I do not notice any changes to my condition. I understand it will take several tries to get the dosage right. I will be patient. Meanwhile, I am interested in getting a telephone amplifier before BOTOX magic happens on me. I find this amplifier quite affordable on the auction site (like $30 each).
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