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As a person with MS, have you seen a pulmonologist?
I requested a referral to a pulmonologist, and I’m so glad that I did. I’m also a little perplexed that none of my providers have suggested it before.
My MS is fairly advanced, but I was having difficulty with the muscles of breathing even when I was still walking and driving. My hospitalization in the fall with pneumonia was a wake-up call of sorts that spurred me into action. Now I’m having many of my concerns and shortcomings when it comes to breathing properly addressed.
Normally, I’m a “don’t do what I did” kind of guy, but in this case, I can’t recommend that you see a pulmonologist if you need to nearly enough. My primary issues have been a weak cough and not being able to fill my lungs completely.
If you have MS, do you see a pulmonologist? Why or why not?
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4 Replies
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I have seen a pulmonologist more than once. The first was after a hospitalization for pneumonia. Most recently, there have been occasional visits along with voice therapy from specialized SLPs, Speech and Language Pathologists, for a weak voice, something I never expected as trained singer and public speaker.
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I was probably about as far from a trained singer as you can get, but I always enjoyed singing in the car or shower. So much so that losing the ability due to weak breathing and weak vocal cords depressed me a lot more than I thought it would.
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Oh, do I understand that depression. For me, I think of it as long-term grief rather than reactive or clinical depression. More than once, and from everyone from a friend who was a physiatrist, to a psychiatrist consultant, to a series of SLPs, I was told to practice complete vocal rest (no speaking, singing, humming, whispering, or straining at anything, including bowel movements; in short, anything that uses or forces the vocal cords closed). I could only listen to music that has no lyrics because I automatically begin to sing, if only in my head, which engaged my vocal cords. Music is so much a part of my worship. At first, I realized that I had to take a legal pad and a to-do list with me to church because I couldn’t answer the phone, and I wouldn’t see most of these people for another week. it was very hard to explain my silence to children.
At work, where I saw many of my patients at their bedsides in my acute care hospital, another Registered Occupational Therapist had to come with me to do the speaking, to be my voice. It couldn’t have been helpful for their disorientation when my “voice” was coming from my male colleague.
After I found a speech therapist who specialized in voice (or singing, public speaking, and voice, I slowly regained my voice. We worked on breath support. My vocal training as a singer came in very handy here.
You don’t have to be a trained singer to take singing lessons. You’ll get that if you join a local church or community choir. If getting out into the community is not for you, you can hire a singing teacher who can come to you. You don’t need to own a piano or anything else. You’ll learn to sing/speak to the imaginary person behind the person you want to speak to. You’ll learn to recognize and live within your limits, whether that is length of time, loudness, effort, turning off any sounds in the room when carrying on a conversation, or making sure that anyone with a hearing loss is looking at you before you speak, and so much more.
There are many tools that a voice therapist can consider to help you. That can be an iPad-based communication app or sound meter to practice your volume. It might the intercom on your landline to call others within your home. Or it might be something as simple as a voice amplifier you wear around your neck or as high-tech as a computer with eye gaze technology that allows you to type with your eyes, then speak what you have written.
Whether you have problems with breathing, breath control, or your voice, don’t let depression be the thing that keeps you from finding the help to be the best that you can be.
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Thanks! That last paragraph was especially inspiring.
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