Myasthenia Gravis Support Group

Good morning all-

My name is Doreen and I have been reading the posts for this support group with much interest. I recently became re-acquainted with an old friend, a 47 y.o. man who has been battling MG for almost 3 years (2 years 9 months). Because of our geographical locations (he is in NY and I am in NC), our reconnection has been on-line and over the phone so far. His personal circumstances provide little or, most times no, support and he is becoming increasingly isolated. He works 10 hour days, 5 days a week, but his weakness is all encompassing. He is taking prednisone and mestinon and also has a monthly IVIG (or is it IGIV)?. That seems to provide temporary relief...he is at his "best" for about 7 days after the IV. But, from our daily conversations, it has become increasingly apparent that the time has come for the 10 hour days to cease. The weakness and fatigue are so overwhelming the only things he can do are sleep, get ready for work (showering and dressing are both time consuming and arduous processes) and go to work. The cycle is taking its toll on him both physically and mentally. When he told me that there was a time that he was so weak he could see his medicine but couldnt reach out to get it, well...the visual image was almost too much for me to bear. I care deeply for him and think that he should be eligible for some type of disability compensation, but neither of us have any idea where to start. The discussions in this forum have been a wealth of knowledge to me as I try to learn more about this disease. I am trying to convince my friend to relocate to NC...but he is concerned about income...or should I say lack of. Please advise about the disability process and if anyone is aware of any resources in North Carolina, I would be grateful. Thank you in advance...sending up prayers for all!!

Post edited by: mslump2u, at: 07/16/2010 07:01 AM

Hi Doreen,

The amount of hours he is working is way too much! I work full time but take 1 1/2 hours for lunch each day. I live close by so I'm able to go home and really relax. It makes a huge difference. The 10 hour days must stop.

As to going on disability, I saw something somewhere that MG is often approved as a reason for permanent disability but I believe you need to be over a certain age. If you received your yearly statement regarding future social security benefits, there should be a web-site mentioned that you can check out.

Good luck!

Cheers!

Sandie

P.S. Have him check out this site and read the diaries and various discussion groups. He's not alone.

Thank you so much for responding Sandie! Unfortunately he does not have as much computer access as either of us would like...I have passed along/relayed several of the discussions/testimonials from the group to him. I am not sure what else I can do from here/long distance. I am encouraging him to come to NC; but income is definitley an issue. He is too weak to apply/be considered for another job...it is almost as if the diasese is holding him hostage! I just want to offer him some relief, comfort and support. He has been dealing with this all alone; family support is virtually non-existent; he drives himself to and from all of his MD and hospital appointments...even when weakness and double vision rear their ugly heads. I am sure we will work things out; the advice and response from this group is invaluable. Thank you again for your response.

hi doreen, i was diagnosed in april 09 and had to quit working. i finally applied for disability in dec 09 and was approved in march 10. did not have to go to a lawyer. in fact the lady from social security did all my information by phone. i was very surprised and pleased that it went through that quickly and they even went back as far as my original diagnosis in april to approve. i am in a mda clinic in memphis,tn. social security did call once and wanted to know if was in a mda clinic and the address for it and the address for my neurologist as well, even though i had already supplied them with that information. i am 58 years old. hope this information may help your friend. i understand completely what he's going through. they had started making us work 12 hour shifts and i could no longer work them because of the fatigue and so i had to quit and applied for disability.

Greetings mslump2u,

Welcome to the group. I hope you can find answers in this group to help your friend in coping with MG.

In regards to some of his symptoms I notice that he works 10 hour days, 5 days a week. This is way too much. I also work 8 hour days, 5 days a week in a hospital and do get overheated and need to stop and rest every hour or so and the hospital allows for this with me but it’s about time for me to give this up also. I know each person’s financial life can have a big effect on this and disability is sometimes the only answer. I will be retiring in 3 months so the disability does not come into play for me. For me it’s a matter of struggling along to get retired and each working day it is getting harder & harder to perform my job with the constant weakness & fatigue.

I notice that your friend has a very hard time with showers and even getting dressed. Both have the same effect on me but through this forum I found out that even the duration and temperature of the showers can have a very big effect on the fatigue. I might suggest that the person take very short showers and keep the water temperature down to very cool. Body temperature can have a very large effect on MG symptoms. And a simple warm shower and even the steam from the warm shower can cause weakness. Cool water down, turn water off, soap up, cool water rinse off and this might help. Remember... For most MG’ers any high body temperature or overheating is one of the biggest factors in controlling weakness & fatigue and keeping the bodies temp down no matter for what reason can help. I know I have repeated myself above in the body temperature thing but some new MG'ers do not realize how simple day to day things like showers can have such a dramatic effect on weakness.

As for myself, while getting dressed after a shower, I actually sit in front of an AC unit in my bedroom to put my clothes on. There again just to keep my body temp down. These might sound like strange habits but in my case they do help. At least for the shower & dressing.

Keep coming back to this group in this forum and hopefully you will find other little tips that others have tried that help to relieve some of their fatigue and weakness.

Good Luck and remember you and your friend are not alone in this!

Best Wishes

Hoz

Post edited by: Hoz, at: 07/16/2010 10:52 PM

Good morning Hoz-

Thank you so much for your response. I am thrilled to be a part of this group/forum and so is J! I've been sharing responses and advise with him. The advice and experiences that are being shared are information for me and confirmation to him that he/we is/are NOT alone. The consensus is unanimous that 10 hour days are WAAAAAY too much and thankfully J is in agreement. Schedule adjustments are being tweaked and tested...we will see how it goes.

Good for you that you will retire in a few months...that is a bright light at the end of the tunnel. We are actively investigating disability compensation for J. Not sure how long the process will take, but we are getting started. He doesnt seem to be as responsive to treatment as he would like and I dont think his expectations are unrealistic. But with the vicious cycle of a schedule he maintains his body just doesnt have a chance to rest, rejuvenate nor relax.

I appreciate you sharing your shower experiences...I will pass that along. We both get excited when I tell him that I checked on line and there was another response. The feeling of support and comrarderie is almost tangible...thank you so much!

Darlene, You are indeed, a very, special lady; your friend is incredibly lucky to have you as a friend. I would agree with posters that this gentleman's schedule is impossible, and that it is likely time to look into Social Security Disability benefits. It's my understanding that often, people are turned down on the first go, however, don't let this stop him from re-applying.

Keep us posted...

oops, I mean, "Doreen"...my apologies!

Post edited by: MGCanada, at: 07/19/2010 07:15 AM

Thank you for the support MGCanada. I took the liberty of reading some of your postings and I see you are a seasoned MG'er. Thank you for your insight as J and I move forward. You WILL be hearing more from me!!!

He needs to contact his local Social Security Administration office and apply. I have been through this process and my case went to appeal; I have overlapping symptoms from Lupus, Graves' disease and cognitive dysfunction (visual/audio-spatial dysfunction), and other CNS problems. The complexity of my case required explanation to the good folks at SSA, but the appellate judge was a quick study!

Depending on the severity of his MG symptoms, he may not have a problem. MG is now one of the diseases recognized by SSA as a potentially disabling disease.

Does this man have any immediate family to help him?

Post edited by: LupieToons, at: 07/27/2010 10:30 PM