Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 H i, my name is ph and I am Monik'a husband.. Monika was diagnosed with SD in April of 2000 , at agee 55. My wife was a pharmaceutical representative but inthe past two years has lost ability to walk , has very little movement in her arms or legs. We have tried, Sinetmet, amantidine, selegeline. Mariplex. but done have helped her. Her new neurologist is now trying Requip. Her voice has become a real problem, At first, her speech was slurred . She has been to a speech therapist who gave her some voice and breathing excercizes but her voice keeps getting weaker, and in a few weeks, I'm afraid it will be totally gone. How do I prepare for this? Is there any way for her to communicate after her voice is gone.? I can't imagine what it must be like for someone not to be able to communicate what their feeling or thinking or need. I've been up most nights now worrying about this , God bless us all, patients caretakers, families and friends who are living in this hell called MSA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 ph, Welcome to our group. Sorry you had to find us. Monika seems to be progressing rapidly even for SDS/MSA. Have they checked her thoroughly for infection as that often makes the symptoms rapidly increase. When the infection is cured therapy can often help you get back some of the lost movement. She will need to exercise the rest of her life. If she doesn't movement will rapidly decline. Speech is movement of the tongue and facial muscles. "Use it or lose it" is our motto here. Yes after the voice is gone there are ways to communicate, stick with us and we will give you hints. Take care, Bill Werre ================================ monika9671@... wrote: H i, my name is ph and I am Monik'a husband.. Monika was diagnosed with SD in April of 2000 , at agee 55. My wife was a pharmaceutical representative but inthe past two years has lost ability to walk , has very little movement in her arms or legs. We have tried, Sinetmet, amantidine, selegeline. Mariplex. but done have helped her. Her new neurologist is now trying Requip. Her voice has become a real problem, At first, her speech was slurred . She has been to a speech therapist who gave her some voice and breathing excercizes but her voice keeps getting weaker, and in a few weeks, I'm afraid it will be totally gone. How do I prepare for this? Is there any way for her to communicate after her voice is gone.? I can't imagine what it must be like for someone not to be able to communicate what their feeling or thinking or need. I've been up most nights now worrying about this , God bless us all, patients caretakers, families and friends who are living in this hell called MSA. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 There are many different types of communication devices. If she is like my husband, she is probably 100% mentally alert and has lots to communicate. Bob usually has plenty of volume (when he remembers to take a deep breath), but cannot enunciate his words. His tongue and mouth just don't move as he wants them to. We have just been approved by our insurance company for a Dynavox communication device - it is a long process (approval) and still haven't seen it, but our hopes are up. It has a keyboard and a screen and a mechanical voice which repeats the key that is touched. Therefore, if a mistake is made (and Bob will make many due to lack of dexterity in fingers) the person can move to another letter. Only when the finger is removed from the board will the letter appear on the screen. For now, we use a white board with markers - we have to watch closely as he writes, but it does work. Best of luck to you - this, to me, with all of the other functional problems, is one of the very worst - not being able to communicate. We also use right hand/left hand for "yes" or "no." You can also use pictures. Elaine Grimmesey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi ph, my name is Annette and my husband has not been able to speak for over four years. I can understand your anxiety over Monika's loss of speech and the ability to communicate. That was the hardest thing for me to accept about MSA. At first I felt that I wouldn't have my husband when we couldn't talk to each other, but we still communicate pretty well. You didn't say how long you've been married but we have been married almost 38 years and I know him well enough to " read him " pretty well. He can still indicate " yes and no " by squeezing the index finger and thumb of his right hand.....so most of the time it's a matter of my asking him " the right questions " ...based on my knowledge of his likely wants, needs feelings etc. when it comes to questions where a definite answer is required. Like " what is hurting you " ...I start with naming most likely answers ....bladder, leg, hand etc....I joke about naming his " 2000 body parts " ....if that doesn't work we start with the alphabet and ask him to squeeze when I say the correct letter. This is very time consumming because his response is very slow and if I'm not careful he is trying to squeese on L when I've gone on to M...etc......everything must be confirmed with a Yes or No. I've written all of this to encourge you that where there is a will there usually is a way. I agree with Bill, there are several things that can be used to communicate as our love ones progress. We started with a microphone and speaker, softwear on the computer, a very expensive portable keyboard that would speak and also could be programed to remember phrases with just a touch of one letter etc....was wonderful as long as he could move his arm at least one foot in each direction (lasted about a year) a communication board with pictures was made by a friend when even touching keys became too difficult but by that time his range of motion was not enough to touch what he wanted. We started very early communicating with those two fingers in the shower etc where no device was practical. I've had to fight contractures ...and guess what?...eight fingers are curled now but we still have those two fingers.....sometimes I have him confirm with closing his eye lids but that is getting risky because he sometimes can not get them back open after closing them. It's not easy ph ,by any means ,but I've found that love overcomes even this obsticle! I've also learned to " read " his face even through that " parkinson's mask " and his eyes can't hide much from me after all these years. It's impossible to fully understand what it's like for our loved ones because we are not there but I feel like I can understand enough to help me help him communicate. PS....there is alot to wanting to communicate. I must add that when is " at his best " , he can move his head ever so slightly, but our wonderful nurse and others that are willing to make the effort can see that form of communication and it makes me almost jump for joy ( and that's saying alot of a 57 year old lady that's over 100 pounds over weight!....remember to keep your sense of humor. be yourself and communicate with them honestly ;and assume they are the same person and responds in the same way they always have. My husband can't tell me to " mind my own business " but when I start telling him things that I'm thinking, I can almost hear him telling me what he's told me so many times before.....I will then ask him if that's what he would like to tell me and when the answer is " yes " ...we both find a smile coming from somewhere. God bless you both and even though I don't read very many post now I'm almost always available to chat and would love to correspond by eamil...feel free to contact me anytime you think I might be of help.. > H i, my name is ph and I am Monik'a husband.. Monika was diagnosed with > SD in April of 2000 , at agee 55. My wife was a pharmaceutical representative > but inthe past two years has lost ability to walk , has very little > movement in her arms or legs. We have tried, Sinetmet, amantidine, > selegeline. Mariplex. but done have helped her. Her new neurologist is now > trying Requip. Her voice has become a real problem, At first, her speech was > slurred . She has been to a speech therapist who gave her some voice and > breathing excercizes but her voice keeps getting weaker, and in a few weeks, > I'm afraid it will be totally gone. How do I prepare for this? Is there any > way for her to communicate after her voice is gone.? I can't imagine what it > must be like for someone not to be able to communicate what their feeling or > thinking or need. I've been up most nights now worrying about this , God > bless us all, patients caretakers, families and friends who are living in > this hell called MSA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2002 Report Share Posted September 23, 2002 THanks Annette for taking the time to write me. Dealing with this seems unsurmountable at times.. Only love for our spouse can ghet us through it. You have been very helpful. Monika and I thank you once again. Quote Link to comment Share on other sites More sharing options...
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