Looking for info
 

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 former speech-language pathologist and have been asked to guest lecture at a local university on MG and its effects on the patient and caregiver. 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...

Hi DJ,
I was DX with MG last spring - my Dr has rec a thymectomy and 3 weeks ago I sought a second opinion and am still waiting for results of tests. So bear in mind what I say in response may not be MG entirely but I feel pretty confident it is.
I started having trouble swallowing and would tire eating food when I was about age 20. I thought everyone felt this way so not concerned. Fast forward to age 37 and I changed jobs into a high sales atmosphere - a lot of talking. I would get terrible sore throats by noon and almost could not speak. Today I look back and think I was pushing muscles that did not want to be pushed perhaps??? So changed jobs after five rough years.
Now symptoms got better, but came and went. I would tire speaking and avoided meetings where I had to speak and family events as well. I was also careful eating in public so I didn't start choking and embarrass myself...
Now last 5 years many other symptoms have popped up. Extreme fatigue, tremors, balance issues driven by sight problems etc. I again avoid going out in public for meals and events if I feel I may have issues. An example would be getting dressed up and having to sit at some banquet perhaps where it would be obvious to many if I got sick.
I will sum my thoughts up by saying: to others, most of us appear healthy, when in reality inside we want to scream and say I am miserable! Many of the neuro diseases rob you of being able to truly express to others how mentally challenging it is to cope with something that is almost invisible to others. So many times it takes away the simple joys we can experience in life and those are sometimes the best ones...
If any good has come from this disease I will say I am a better person today for not judging others by what I see and instead listen to what they are truly saying...
I hope this helps and others chime in.. Good Luck!

My face muscles were the first to go about 12 years ago. I noticed I had difficulty chewing anything that was not soft (steak, apple, etc) and also, that I would wake up with my pillow soaked with saliva. Also, I started to choke a lot more; I put it down to "swallowing down the wrong pipe", but I now know that I was having difficulty swallowing at all.

After diagnosis, I did okay with medications for about 5 years before I started having more difficulties with mg overall. The last 2-3 years, I have had more and more difficulty with talking. I am an accountant and one of the tasks I enjoyed the most about my job was training new staff members and holding training seminars for the entire office so they would understand the reports the accounting department produced. I started losing my voice while I was talking and when you can't talk above a whisper, it is difficult to talk in front of a group, so I had to turn that over to my assistant. Also, talking on the phone when you can't speak above a whisper is impossible.

I retired about 14 months ago on disability and my speech problems were one of the reasons.

My family understands and they can tell before I can that my voice is going and they tell me in the nicest possible way to "shut up". However, I live alone and don't have anyone to talk to during the day, so when I do get visitors, I can't seem to shut up! Oh well...

Good luck with your seminar!

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 have had both -- the speech difficulties are CONSTANT -- the swallowing difficulties are mostly when I'm trying to swallow pills, when I'm trying to swallow ANYTHING late at night, and when I'm in exacerbation. See below for compensation techniques.

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, I was seen by a sweet, compassionate, and SMART young woman who spent a lot of time testing me and then explaining exactly what was going on. She then showed me techniques for swallowing (which I used SUCCESSFULLY about an hour later at a restaurant -- chin tucked over shoulder and swallow -- YAY!!) When she mailed me a final report, she included EXTRA materials about MG that she had researched after my visit. She even called about a month later to see how I was doing.

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?
No, I had already been diagnosed.

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)
I am no longer able to work due to speech issues.

How has your social life been affected? (Same as above)
I have always been more of a listener than a talker, so it hasn't been a BIG problem. But, when I DO talk (I can say a couple of sentences, usually) -- I tend to slur badly. My family and close friends can USUALLY understand me -- I tend to keep paper and pencil close at hand, just in case. I also do a lot of hand "motions". :D It also helps that I am NEVER left alone. A family member or close friend is ALWAYS with me (due to possible serious breathing problems -- MG "fun", ya know?) -- so, the people who are MOST likely to understand what I am trying to say are close at hand. Life "ain't" so bad! :)

Hi a quick hello djvallejo
 

Just wanting to thank you for doing a lecture to student doctors as they learn how to manage patient care. I did this also at the University of Comumbia Medical center, regarding my own experiences with a condition I have. I was in a trial study. What you are doing is the very best thing to help student doctors address the patients concerns as they stuggle with their health conditions. I brought my two children to this formum at the time they were teenagers. They too were able to tell this huge group of third year med. students, how my illness effected their lives too. Thank you for doing this. A Better and more compassionate group of doctors will be the result. Happy Valentines day, ginnie

Thank you so much for your input. My husband & I feel the same way and are much less judgemental of others (our daughter is learning this also). :hug:

Thank you Juanitad! I'm glad you were able to get disability. The "shut up" part of your post made me giggle! We sometimes do that to my husband too :D

Jana, thank you so much for the detailed response. I'm glad you had such a positive experience with the speech pathologist - I can't wait to share it with the speech grad students! Do you mind telling me what type of work you were doing? BTW, you have a GREAT attititude!!! :hug:

Thanks for the kind words Ginnie! The students I will be lecturing to are actually speech language pathology grads and it is truly my hope that they will go out into the field with a better understanding of how MG and other diseases affect the patient. Happy Valentines Day to you too! :)

:hug:, Alison, I was a teacher -- have also been a guidance counselor. After my session with the fantastic speech language pathologist, I wished I was STILL a counselor -- wanted to go encourage students to go into this MUCH needed field! The young lady who worked with me was also teaching at a local college. She talked a little about working with her students -- we compared "notes". :)