May 30, 2019
A lot of the comments are posted by women. I know that MS attacks women for the most part. There are us men who also have male-specific problems. I'm wanting to open a discussion with the hopes of addressing Men and MS problems. I was diagnosed in 2007 with RRMS and am now SPMS. Any comments out there men or women? Thanks for this forum.
June 3, 2019
Hello David, thank you for posting! So true that MS affects more women than men and that women dominate the conversation. Here's a link to an article of mine about the ways MS affects men in contrast to women: https://multiplesclerosis.net/?s=MS+and+the+Manly+Man
You can also find articles by our male contributors about how they experience MS. Just click on "Menu" at the top of this page, then "Community" and "Contributors." There you can click on the bios of Devin Garlit, MattG, et. al, where there is another link that takes you to a list of all their articles.
I hope other readers will respond to your post very soon, David! --Kim, moderator
June 3, 2019
Thanks Kim. I will check out your entry. I have been following Devin for some time now. He certainly is relevant. Often I think he is writing about me. So far, I have been very blessed. They started me on Rebif early on. I was on it for 2 years and then my grant ran out and did nothing with my MS. Finally got connected with the VA. They just started a new program, the MS,VET. I was accepted into the program. I started on Avonex 9 months ago and am doing much better. The recent two MRIs have shown no new lesions. David
June 3, 2019
David, that's so great that the VA has a new MS treatment program! I've heard from veterans in the past that had unhappy experiences there, so this sounds like a huge step forward. I'm so glad you're doing much better and that your MRIs show no new activity since being on Avonex. Hope things will continue that way! Please keep us updated, we care. Warmly, Kim, moderator
June 4, 2019
My history with the VA in the beginning, years ago, was terrible. Any appointment was an all-day event. I gave up and began using my insurance and out-of-pocket payment. When the VA sent me a letter regarding the MS VET program I was very skeptical. I went and was hugely surprised. The MS program was a full smorgasbord of help. They tested me, they examined me, they provided me with all my medications. I was seen in psychiatry, physical therapy and even for chronic pain. Usually, they see me within 5-10 minutes. There were signs everywhere at the check-in desks that say, "If you have waited more than 15 minutes please check with us again so that we can see why you are still waiting." I have nothing but the best to say about how I have been treated over the last year and a half. There is such a massive change in everything. I recommend people to try it again. David
June 4, 2019
David, would you consider writing about this in our Stories section? This change in the VA treatment program is so important to so many, I'd like to think of ways to get the information out there. Your posts about this are a revelation! If you have any suggestions/ideas for getting the word out, that would be fabulous. --Kim, moderator
June 17, 2019
I would be happy to write about my experiences with the new VA program. I am a writer and am a photo journalist. I was the editor of three college campus newspapers back in the day. Do you want me to write here or under somewhere else and submit it? Just let me know. Sorry to not get back to you sooner. I live in a blended family and the accompanying chaos that goes with it. I didn't know until today that there was an inbox. I found a number of messages and am just now trying to catch up with all of them. I will check more often. Thank you. David
May 9, 2020
Hi, "dropfoot" Thanks for your note. First of all, you said it in your own post "...if you don't take care of yourself, who will?" That's the key to this whole journey. When I have to attend activities and don't want to feel weak or guilty I'm just honest with them. I tell them, either in person or in a note, That "Thank you for inviting me, I seem to be going through a tougher time than usual with my MS and will not be able to attend. (This gives you an honest answer and possibly a chance to educate depending on how they respond.) I admit it took me a while to tell people about my diagnosis but after a few times, it became easier. I found out that they were interested enough to inquire further or they dropped it. The response was freeing. It now comes easily. There is nothing to feel guilty about as you did not choose this for yourself. It's no more of a choice than the color of your hair or freckles. I guess I'm an educator at heart and always looking for a chance to teach. From your note, it sounds like you have already worked through many of the stages. I'm encouraged that you felt open and strong enough to share this with me. You do have strength and character. Have faith in you and take care of yourself, "dropfoot" Let me know if I can be of any further help to you. I, or we are all in this together and have "been there, done that." David
May 11, 2020
Good morning, Thank you for your words of wisdom. Moving on to a popular subject, covid-19. I like most people have been self quarantined. Being in quarantine has lowered my immune system. Today, coffee shops & restaurants open. I have mixed feelings about going out. Although, I am bitting at the bit to get out. I have concerns about my underlining health condition. MS’ers have a weaker immune system. However, by not exposing ourselves to outside exposure. We weaken our overall immune system. I guess I am feeling fear! I am caught sitting on the fence, scared. Later today, I will gradually gain exposure to help rebuild my immunity by going to McDonalds. I will avoid crowds. Meanwhile, start to live life.
June 17, 2019
Kim was referring to our Stories section. Just click on the blue "submit your story" button under the header.
Thanks for your generosity in sharing your story! We can't wait to read it! -Warmly, Donna (MultipleSclerosis.net team)