[djvallejo]

Hi Everyone,

I am djvallejo's wife, Alison. It has been quite a while since my husband and I have been on the board so I hope you don't mind the intrusion. He is doing quite well on Mestinon only and we are very thankful for the improvement he has had. We sincerely hope you all are doing well also.

My reason for this post is to gather info - if you are willing to share. I am a speech-language pathologist and have been asked to guest lecture at a local university on MG and its effects on the patient and caregiver. (I did this 2 years ago also, but I'd love any info from anyone who didn't respond before). If you don't mind answering any (or all) of the these questions, I would greatly appreciate your input since my husband is my only source. Any info you provide will be kept confidential. My hope is to provide the graduate students with information that will assist them as they enter the workplace and also help them to see their patients as more than just another person on their caseload. Sometimes the universities fail to stress that there is a "real person" under all of the symptoms!

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)

How has your social life been affected? (Same as above)

Thank you all for any info you are willing to share. Even though we are not on the board often, please know that my husband I travel on this journey along side each of you...

[Juanitad]

I had to retire on disability 3.5 years ago due to mg. Not specifically speech or swallowing, but the whole of it.

Before I was diagnosed in 2000, I had a lot of difficulty chewing and swallowing. In fact, it was one of my primary symptoms. I could only eat soft foods and had to be very careful when swallowing to not choke. I didn't see a speech therapist but my daughter is a physical therapist and she knew something was wrong - we just didn't think of mg (I had never heard of it). After 6 months of problems and arguing with my doc, I finally got a referral to a neuro who diagnosed me pretty quickly.

Once I started getting the proper treatment, my chewing and swallowing symptoms abated. However, when I feel my cheeks getting sore and start having difficulty swallowing without choking, it is time to call my neuro and discuss changing or adding to my treatment.

Don't ever feel you are bothering us on this site. We live to serve! (or something like that!)

[Panorama]

Originally Posted by djvallejo

My reason for this post is to gather info - if you are willing to share. I am a speech-language pathologist and have been asked to guest lecture at a local university on MG and its effects on the patient and caregiver.

There is a section in Myasthenia Gravis: A Manual for the Health Care Provider that deals with speech pathology and swallowing issues. The MG Manual is a PDF file and it is available for free.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 90

-Mark-

[Panorama]

Originally Posted by djvallejo

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)

How has your social life been affected?

At times before treatment I could not speak a word. I sounded like a stroke victim. This made it difficult, but not impossible to work. I drive a taxicab and need to communicate with the dispatcher and passengers. The inability to communicate could have created safety issues. What if I needed to call for help? Sometime a cab driver needs to raise his or her voice to defuse a potentially violent situation. One needs to project aggressiveness to avoid escalating some situations further. It is a disadvantage if weakness is perceived. Without the ability to scream at a passenger, I might need to take physical action where a loud voice might have sufficed.

There is a affect on ones social life. In my case I drive a taxicab on the graveyard shift, always weekends. This tends to be a rather isolating lifestyle. Friends and family are on a day-cycle, so it is already difficult to connect with them. Add to this the inability to speak and the the isolation is intensified. One cannot even stay in touch with friends on the phone.

-Mark-

Hi!
Since my MG is very bulbar, Ill answer your questions.

My MG even started with the bulbar problems, having swallowing difficulties was my only symptom for a few months.

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?
Yes, I had to use medicinal liquid food for over a year continuously. It is a very limiting problem, because not being able to chew, laugh, talk or swallow is awful. I have had a period where I could not talk, not even make the slightest sound. I felt terribly locked up and I felt like going crazy.
I still have many problems in that area. My food has to be: not to hot, not to cold, not to hard, not to soft, and one thing is the most important: never, ever eat stuff with both hard and soft / liquid bits in it. Like cornflakes or egg salad. It comes out of my nose, and that aint fun.

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?
Yes. It did not help, they gave me exercises. I have tried 2 different ones, because I do not give up easily.

How has your ability to work been affected by your MG? (Specifically interested in or swallowing issues but all info is appreciated)
It has affected it greatly, MG severly disabled me. I cannot work, which I still have problems with every day: it feels like failure and makes me sad.
But this is because it is generalized, I have breathing and energy issues to for example.

How has your social life been affected? (Same as above)
Yes, a whole lot. I cannot do much, and anything outside my house is like an adventure. The bulbar problems affect this to, because talking and laughing are very important for your social life.
It has greatly affected my love life too.
And it makes you feel unsure, and ugly, to have no control over your expression or your mouth. "Let's go out for a drink" might seem like a sweet little question, but it makes me nervous.

[Panorama]

Originally Posted by djvallejo

How has your social life been affected?

My two passions in life are off-shore fishing and photography. MG has a dramatic impact my ability to fish and pursue my photography.

We fish the Monterrey Bay for Salmon and Albacore Tuna, among other things. Both can be as big as 35 pounds or more, but usually 12 to 18 pounds. The Monterrey Bay is not a gentle body of water. Sometime we go 50 miles off the coast of Monterrey after the tuna. The Bay is almost always overcast, and the wind and waves make navigation tricky. Just holding oneself in position in the boat for 12 to 36 hours is stressful and fatiguing on the mussels.

Factor in the effort to get the boat, set it up, transport it to the harbor, and launch the boat, repeating the process at the end of the trip. I can barely type the concept, let alone physically execute it.

If I should hook a big tuna or salmon, one that might take over an hour to land, I do not have the upper body strength to reel them into the boat. I no longer have the physical ability to do this. I miss being on the water.

Photography too is a very physical activity. I have professional studio equipment that I transport in my van. The equipment is not kept in the van, but rather in my apartment. When I get an assignment I load the equipment from the apartment to the van and transport it to the location. I then setup the studio. I carry 150 bounds of sandbags alone, in 5 pound, 10 pound, and 25 pound bags, to archer light stands, background stands, and booms. After the shoot I break down and load the equipment back into the apartment.

I simply do not have the strength to do this any more. I could hire an assistant to do the manual work, but shooting is also a physical activity. It is also tricky accepting a future assignments. I don't know if it is going to be a good MG day or a bad MG day. How can I accept a wedding job months in advance with the uncertainty of my physical ability on the day of the shoot.

-Mark-

[limpy]

I have Lambert Eaton Myasthenic Syndrome, which also attacks the neuromuscular junction and has similar symptoms to myasthenia gravis, although mg has not been entirely ruled out as a secondary disease, because my bulbar symptoms are much more exaggerated than a typical LEMS patient.

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?

Yes. Even though I am much stronger at this point, I can still experience weak voice if I talk too much, expend too much energy with other activities, etc. I have to be careful with swallowing, even though it is better. In October I had a feeding tube placed, but in December, I was able to have it removed because of improvement from rituxan treatments. Let me just say that I have to be mindful of how and where I eat and under what conditions. I no longer eat out, because it can be very embarrassing. I do, however, get things and bring them home and eat them. When I was in the hospital eating was one of the most tiring and difficult things to do.

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?

I have been seen by three or more speech pathologists because of my extreme problem with swallowing, mostly in a hospital setting. I have also seen one outpatient for evaluation and outpatient therapy. Therapy such as swallowing exercises, tongue exercises, etc. proved to only exacerbate weakness and caused weakness in other parts of the body. During this time was when I discovered that I no longer have a gag reflex and pills or particles of food can sit at the back of my throat for periods of time without my knowledge of their presence. Swallowing has been the most difficult and stubborn to treat symptom since it first developed. I am currently experiencing significant improvement with swallowing since undergoing rituxan treatment in December.

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?

No, I was already diagnosed when I first saw one, but the one I had at my local hospital that tried the therapy and also did swallow studies when I was hospitalized, knew I had a problem, because she could see it firsthand.

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)

I was not working at the time I got diagnosed, but if I had been, I would have had to quit. For a while it was impossible for me to carry on tasks of daily living. I am much better now, but don't think I could tolerate a regular job. I can no longer go to sit down restaurants, due to the fact that I have to use muscles to get me inside, then to sit upright, which makes my swallowing play up. At home, I spend a lot of time reclining and resting between activities, and it is dangerous to try to do other things while eating. I have totally adapted to the way things are and am fine as long as I don't push my limits.

How has your social life been affected? (Same as above)

I can no longer make plans because, as Mark said, you don't know how you will be on any given day. I can't go to stores that don't provide handicap carts to get around. Although I am walking now for short distances, i have difficulty sitting upright to shop for longer periods. My neck and my core muscles get very fatigued.