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Fear of the Phone: Speech Related Issues And MS

Fear of the Phone: Speech Related Issues And MS

The many, varied symptoms of Multiple Sclerosis can make a lot of normal, often trivial, activities into massive hurdles for us.   I’ve discussed some of these before, like showering, shoveling snow, walking, and even sleeping. Today I was reminded of one I deal with often, but had gotten so used to that I had forgotten that it wasn’t normal until recently.  I’m referring to being able to talk on the phone.  This is such a basic thing that so many people do every day, but I avoid it like the plague because of a combination of MS-related speech and cognitive issues.  This all seems like a great reason to talk about some of the speech issues that those with MS might encounter.

Like many folks with Multiple Sclerosis, I suffer from some speech and swallowing issues.  I’m going to throw out some terms and examples here in case you here your doctor or speech language therapist mention them; these are common issues that aren’t always discussed a lot.

Dysarthria

Dysarthria is a speech problem that involves the weakness, slowness, and lack of coordination in the muscles used for speech (like your mouth, tongue, lips, throat, diaphragm, etc).  Just like many people have problems with their using muscles in their legs, the same can happen with our speech muscles.  There are different types of dysarthria you may hear your doctor/speech therapist discuss: flaccid, spastic, ataxic, hypokinetic, hyperkinetic, and unilateral upper motor neuron.  I won’t get into each of those, just understand that they are all related to different speech producing muscles.  The signals our brain is sending to those muscles isn’t fully making it there because the myelin around the nerves needed for that communication have been damaged.  One of the big issues this manifests itself as is slurred speech (ataxic dysarthria).  I’m sure many of you have heard the phrase “I’m not drunk, I have MS”, well add a little dysarthria to your foot drop and you can indeed appear drunk!  This is a pretty common problem for me and a big reason I hate using the phone.

Dysphonia

Dysphonia is very similar to dysarthria, except that it affects the muscles that control voice.  The end result is that we may end up speaking in different pitches, or we may sound out of breath, or even only be able to speak quietly at times.

Aphasia

Basically, aphasia is the loss of words resulting in communication issues.  It is the inability to comprehend or formulate language because particular areas of our brains have been damaged by MS.  Trying to remember the name of people, places, and things is a common example (that “word on the tip of your tongue but you just can’t get it” phenomenon is known as anomic aphasia, as with all of these, there are different types depending on where your lesions are).  Aphasia can also include difficulty understanding what others are saying and even how to use words in a sentence.  Though we are discussing speech here, note that this issue can extend to written communication as well.  This is an issue I experience, and I can tell you, it’s both frustrating and terrifying.  I know it’s not my actual intelligence that is wrecked, but it sure feels that way.  I know the information is in my head somewhere, I just can’t access it.  It’s a maddening symptom and if you talk with me long enough, you’ll witness it.

Dysphagia

Ok, this doesn’t necessarily hamper my ability on the phone, but since we are talking about speech issues in MS, it must be talked about.  Dysphagia is difficulty swallowing.  The ability to properly control the muscles needed for swallowing is damaged.  This causes coughing, the feeling of liquids “going down the wrong pipe”, and even aspiration of liquid and food into the lungs (which can lead to pneumonia).  This is also one that I have some experience with: I choke on liquids often.  I have also gotten pneumonia many times because of it.  This is a serious issue.  I’m often asked if I think MS can kill people.  I say, not directly, but I believe some of the symptoms caused by it can.  Dysphagia is one example of that: it can easily cause pneumonia, which can eventually lead to death.

Speech issues are pretty common in MS, so I highly recommend seeing a Speech-Language Pathologist (a speech therapist) if you have them.  They can help you learn strategies to deal with all of these issues.  They certainly helped me a lot; many folks may not even realize I have an issue.  That said, I still get weird about talking on the phone (with the exception of calling my mother. No matter what your speech sounds like, ALWAYS call your mother if you can folks!).  Thanks for reading and as always, I’d love to hear from everyone!  Do you suffer from any speech-related issues?

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Learner2010
    2 years ago

    Thank you for sharing your experiences and these definitions. I haven’t added speech issues to the ever-lengthening list of MS related symptoms but in reading your list it becomes clear I need to do so. I get several of these symptoms when I am tired and even dropped out of singing groups because my vocal cords give out after about 30min of straight use. Good to know there are exercises I can try.

    I use Luminosity and Brain Games for the Aphasia and memory issues, but it’s still a bummer to be having all the memory loss of my friends in their 80’s while I’m just 50.
    Thanks again!

  • Devin Garlit moderator author
    2 years ago

    Thank you Learner2010! Appreciate you taking the time to share your experience with us!

  • saddison
    3 years ago

    Your articles are so excellent and so very much appreciated. Having had MS for a very long time, I have experienced many of the speech-related issues you mention. My speech/language/cognitive issues worsen over the course of the day, as do my other MS-related issues. My voice is always low volume. The degree of slurring is proportional to my level of fatigue and/or relapse. I run out of air before I can finish a sentence. I can no longer sing, but I can whistle. Talking on the phone is avoided for all of the above reasons as well as for cognitive reasons. I have swallowing issues, and have had aspiration pneumonia. MS gifted me with an active temporal lobe lesion which caused seizures. These seizures left me aphasic at times. I have worked with OT, PT, and SLP’s for many, many years with helpful results. They, my husband, family, and friends have helped me through some frightening times. You must learn to begin again…and again, while keeping your spirit strong.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much saddison! My issues also get worse as the day goes on and as I get fatigued. Afternoons can be very tough! It sounds like you have an amazing support system AND a great fighting spirit, I’m so happy to hear that! Thank you for sharing your story, I appreciate that very much, and it’s helpful for others to read as well!

  • lcal
    3 years ago

    Hi Devin
    I have never written on here before(I read articles) but I felt compelled to chime in on your phone topic. I have ended up isolating myself from family,friends over the last 8 months because of my sudden hate of using the phone and I cannot thank you enough because I have been racking my brain as to why I will not answer or make calls, instead I message.
    Now that you have brought light to this topic it makes total sense. I have always been an outspoken person with a not quiet voice. It has been years now that when I speak everyone tells me they cannot hear me yet to myself I feel like I am speaking loudly. That put together with running words together, forgetting words etc.along with major fatigue I have been feeling I must have totally lost my self confidence which I have never had a problem with. Ive been dealing with MS for 22+ years, have always been active in the neuroscience behind this and other Nero issues and never put the speech issue together
    with MS which I feel I should have since I had a stroke at 19 yrs old(am 49 now)and had plenty of speech therapy for a yr after that.
    My lack of explaining myself is horrible so I hope all of this makes sense and again Devin thank you for writing about this topic along with all of your articles!

  • Devin Garlit moderator author
    3 years ago

    Thank you lcal! Yep, all that makes perfect sense to me. I think this is a much more common issue than people realize. I’ve had a number of people message me and say what you’ve said, that they just never put it together. So you most certainly aren’t alone! Thanks so much for taking the time to write. It’s nice to see that others experience the same thing, it’s helpful for others to see that too!

  • Paidion
    3 years ago

    Thanks, Devin, for another articulate artilcle! Well done! I sometimes have difficulty understanding what someone is saying on the phone. I prefer to talk face to face, but that isn’t always possible – especially at work (I work remotely – not in the office). I also have a friend with MS who prefers talking on the phone to texting

  • Devin Garlit moderator author
    3 years ago

    Thank you Paidion! We all seem to have our particulars about how we communicate! I definitely sympathize, as I worked remotely for a long time as well and getting on the phone was often very rough! Thanks so much for reading!

  • tfs
    3 years ago

    Devin: I so love reading the information you provide. Again, I never thought about speech until you wrote about it. I am no longer able to work, however, in later working years I noticed I was always being asked to repeat myself. My partner would often ask me to speak up. I am very aware of the fact I do not project my voice very well, and never really attributed it to the neurological stuff. I was always “quiet” and “shy” by nature so I thought that was the origin. I’m going to look into it. I don’t really mind the phone so far, and I love talking to my daughter. Grasping for language is certainly a thing, but I try to be patient with myself. Keep writing. You are wonderful.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much tfs! As I mentioned, I hadn’t really thought of it either, until a close friend that is a speech therapist pointed it out! Thanks so much for reading and sharing your thoughts! Always appreciated!

  • chalknpens
    3 years ago

    Yes, telephones are challenging. I sometimes will forget who I’ve called while their phone is still ringing, and have to pray that i will recognize the voice when it is answered. I don’t have a cell phone anymore (expense and too easy to misplace) so text messages don’t reach me (I wonder if they would be easier to keep track of?)

    I prefer emails to phone calls, though sometimes it will be hours before I happen to be at the computer to receive those. The era of cell phones and social media seems to require immediate access; that’s not my style, not my comfort level. I do my best to answer messages left on my machine as soon as I hear them.

  • Devin Garlit moderator author
    3 years ago

    Thank you chalknpens! Just as you mentioned, I often have a panic moment when I forget who I’ve called, and that with really only calling one person (my mother). There is certainly something to be said for not having that immediate access that seems all the rage these days. I often wonder if we’d all be better offer without everything being right at everyone’s fingertips, it would be much less stressful!

  • Dimitri
    3 years ago

    I think this is an important issue mainly because people may not even realize it’s an issue. I went for some neuropsychiatric testing, because I realized there was something wrong with my thinking. The results were devastating.

    So my neuropsychiatrist recommended I go to rehabilitation therapy. When I went for rehabilitation I had to have an assessment done. So while I only thought I needed some sort of cognative rehabilitation they ended up sending me to a physical therapist, occupational therapist, and a speech therapist. That really surprised me, because I hadn’t realized I had a problem in the speech area.

    The speech therapist pointed out a lot of problem areas and used a lot of scary words to describe the problems. I was introduced to telegraphic speech. That’s when you use simple three or more word sentences usually comprising at least one noun and verb speech. I recorded my voice and analyzed it and to my surprise I realized how awkward my voice really sounds.

  • Devin Garlit moderator author
    3 years ago

    Thank you Dimitri! I also didn’t realize I had speech problems at first, however, I have a good friend who is a speech therapist and she pointed them out (she also assisted with this article). The importance of physical, occupational, and speech therapists are too often not explained to those of us with MS. They can be invaluable when trying to live with the symptoms we have, even the symptoms we don’t realize we have! Thanks so much for sharing with us, very much appreciated!

  • Dragon Lady
    3 years ago

    Hey Devin – MS hit me hard with my speech. For eight months I basically could only speak a couple of slurred words at a time. I did not go to a doctor. I taught myself how to speak again but it was a long and arduous journey! I am considering going to a speech pathologist now, after reading your story. I want to know what type of speech difficulty I have. I do know one thing definitively. That is, the more tired I become, the worse my speech gets. By 8:00 pm I can’t really have a conversation, it is too difficult to talk. I am not understood by these stupid automated phone menus. They do not recognize my responses. I find myself, sometimes, actually, yelling my answer into the phone, like that would make a difference. It is very frustrating. So, yes Devin, I understand totally about the problems of speech that MS can leave us with. Thank you for your article. You inspired me

  • Devin Garlit moderator author
    3 years ago

    Thank you Dragon Lady! Like you, the more tired I get, the worse off my speech becomes (as well as a few other symptoms as well). I’m happy to hear that you’re considering seeing a speech therapist, they really can be very helpful and give you tips to adapt! Thanks so much for reading and sharing your experience here, I very much appreciate it!

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