Submissions regarding speech challenges
Submitted in an email support group post by Jackie Wellman
Here are a few tips the speech therapist gave me:
Speech (my main problem):
Tips from a speech pathologist
Submitted by Thurza Campbell
Thurza: When I went to a Speech Pathologist at Massachusetts General Hospital, I took this list and she thought it was excellent. The only thing she added is, "be sure to tuck your chin when you swallow, as that lines up the throat correctly so that food will not go into your windpipe.
1. Yawn-sigh: Yawn, then release your breath in a slow and relaxed manner. Sigh. Do this a few times, then add a little sound to the sigh, but keep it gentle and relaxed: "ahh". Add an "h" sound to the beginning of the "ahh". Can you feel your breath as you hold your hand in front of your mouth?
2. Confidential voice: Speak clearly to your communication partner, but as if you are trying not to disturb someone else nearby. Practice this several times a day, in ordinary conversation with your wife or friends.
3. Humming: Take two minutes a few times a day to hum a song. The vibrations of humming are gentle and will massage your vocal cords.
4. Scales or sirening: Saying "Ha", go up and down the scales, changing your pitch in a gradual and gentle way. Or you can imitate a siren (when everyone is out of the house!!). This will stretch the vocal cords and the surrounding muscles.
5. Words with "h" Practice lists of words beginning with vowels, putting an "h" in front of each one. This encourages a breathy voice. Hold your hand in front of your mouth to see if you can feel your breath. Words: e.g. "h" + "all" Say it slowly in a gentle, breathy voice:
all eye I’ll I’d I I’m our own ease eyes in ooze is ear air old odd on and am oh eel end aim egg ore are arm age eve ail owe aid add edge or owl Abe of ill earn aisle urge awe elm isle ad Ed earl
Enkidu speech augmentative device
Posted by Thurza to PLS Friends
This is for all of you with bulbar problems. 10 days ago my Enkidu arrived. This is a "talking" computer. I had been advised to apply for insurance coverage before I was desperate for help, as insurance approval would take awhile. It took 4 months to get the approval, which was handled for me by the therapist at Spaulding Rehab. in Boston.
I have had 2 training sessions now, and am pre programming many common sentences into it. I have tried it out on the phone with my business partner, and also a couple of clients. The possibilities to connect are fantastic. One of the things to get used to is that I have it set to use a male voice, as no one could understand the female voices. Using it out of doors in bright light is difficult, as the light reflects off the screen, making it hard for me to see. You might wonder why I don’t just use it inside – I’m a landscape designer, so my business meetings are outside with clients. Got to figure that problem out.
Jim just got me a phone headset, so my hands can be free to type words into Enkidu while another phone is lying by the speaker to relay the sound. Does this sound complicated? It is logistically something to get used to, but isn’t that what PLS is all about? If anyone wants to learn more about it, get in touch with me. The device is also a PC with Microsoft Word, Excel, etc. programmed in, so you can use your Enkidu anywhere and then transfer to your desktop (once I master how to do it!).
Posted by M. David L to PLS Friends
My understanding is that I have two major problems, the lack of flexibility and movement in my tongue, mouth and lips. These can be partially addressed by exercises. However, the major problem is the loss of air through my nose because my soft palate does not work properly. This is the prime problem, contributing to my lack of intelligibility. It results in a lack of differentiation in sounds and consequentially a confusion as to whether I said "pat" or "bat" etc. The problem is not in the voice box. What is effected is the Soft Palate. What happens is the soft palate becomes stiff and when this happens your speech becomes very garbled and slurred. I had this problem. My speech therapist told me about a palatal lift that could possibly help my speech. She made an appointment for me at the U Connecticut dental lab. I went there and they ran a gag test on me to see if I could handle the many fittings required to make this unit. I passed! It took about three months to get the finished product but it was well worth the wait. The prosthesis fits into your mouth like a partial denture. It has a tail on it that presses against the palate. My speech has improved to about 70% of what it was before PLS. Wear it all day; take it off at bed time. Ask your speech therapist about it. The soft palate also effects the volume of your speech. Try blowing up a balloon. If you are unable to blow it up, try pinching your nostrils shut then blow it up. If you succeed, it is your soft palate. Check with your neuro. He can tell you if your soft palate is functioning. My speech came back about 45%, enough for people to notice. I have a partial plate and a beaver tail was added to it. Check with your dentist he might be able to point you to a dentist. Dentists that have had 2 more years of school and specialize in working with people that have cancer of the mouth and accident victims usually also make the lifts. If you are on Medicare they will pay for since it is considered a prosthesis. Cost is around $2,000.00.
Tips from the perspective of a care-giver
Posted by Don Wilson to PLS Friends
Communication is likely the largest obstacle to a person with bulbar involvement of a motor neuron disease. Not only is it frustrating to the the person with the disease, it is often more frustrating to the caregiver, who wants only to do what the person wants or needs and feels totally inadequate when understanding is not reached. The easiest and least expensive aid is noting more than a notebook, sheet protectors and a little time with paper, marker, scissors and magazines. On one or more sheets, write in LARGE letters simple items that the user may want: "Bathroom, please." "Can we go outside?" "Is there a movie on TV?" "Could I have a drink?" And anything else you might need. The pages can be turned by the patient or the caregiver, and the patient can point at the item desired. Then, make up a page or two of items for each meal of the day. Cut pictures from magazines, newspapers, or even hand-drawn pictures Again, the pages can be turned and items selected. The sheet protectors insure that the book will be in use longer. The next level would be items like the Polyana 3, Link, and Lightwriter. I am sure there are others. Further along the list are items like the Enkidu. Most of these machines will connect to telephone lines in some manner. Some will even connect to the Internet. A few items should be considered when making a purchase of a communication aid. First, the easier to use the better. Something with a keyboard will work for many, but the future should be considered. As the disease progresses and the ability to type decreases, what then? Some machines can use a library of pictures and symbols which can be selected with a touch screen to form sentences that the machine then says. The Enkidu is one of these machines. Some of the lighter machines, some models of Lightwriter will also operate as a SCANNING aid, with a cursor or light bar highlighting letters and when the correct letter if highlighted, a simple switch is pushed (pulled, puffed, almost anything) to select that letter. The communication may be slower, the the object is communication, which will happen. Purchasers should consider the long run, especially when the Medicare will not purchase these items one after the other. Also, an evaluation by a professional speech therapist is absolutely required for assured Medicare coverage.
Saturday, September 8th, 2012
DON'T MISS OUT! Come hear the very latest about what is known about and what hope we have for a cure for HSP and PLS. Also, you will love meeting and learning from over one hundred other people with these conditions. Make friends, learn from others about how to cope, the best tools and just have a great time.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors, CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.