29 Responses to Comments

  1. Sabrina H September 13, 2015 at 5:58 pm #

    Thank you for all that you do.

    • Richard M. Cohen September 13, 2015 at 8:22 pm #

      And thank you for all your help . Hope to meet you someday.

      Best,
      R.

  2. Ann September 14, 2015 at 9:18 am #

    I can not live any other way than “keeping the faith”. I think the “I am not a robot” software might have been part of your problem for what it is worth. I’m happy to see your site getting better.
    Ann

    • Richard M. Cohen September 14, 2015 at 11:50 am #

      Maybe all; of us have a software problem.

      R.

  3. Jenny September 14, 2015 at 11:46 am #

    Technology is like RRMS. One day it works (remitting) and one day it doesn’t work (relapse). I wish programmers would be able to work with MS researchers and come up with a new program to “reboot” us!!!!!

    • Richard M. Cohen September 14, 2015 at 11:51 am #

      Agreed.

      R.

    • Yvonne September 15, 2015 at 9:46 am #

      Jenny perfect !

  4. Sue in tx September 14, 2015 at 5:11 pm #

    Yes, i like the reboot idea!

  5. Dale September 14, 2015 at 11:23 pm #

    Thanks for sticking it out so we could have a place to escape the daily castle siege again…..

  6. Yvonne September 15, 2015 at 9:50 am #

    My comment posted before I added “researchers need programmers so they can learn the reboot techniques and leave those damn mice alone”

  7. Jan1 September 15, 2015 at 10:40 am #

    Will try again, as it appears that messages are going through?

    Yes, perspective and a positive attitude, regardless of the challenges, truly are important, I think.

    Feeling rather horrid this morning (that was last week; no change) but still pressing on with what I need to do. While at the computer, I found this in my LinkedIn home feed: http://goo.gl/t1Rbqw

    Thoughts of perspective, new definitions… and warm cookies. (Sometimes caving into gluten is good for the soul).
    —————
    Anyone else out there plagued by:
    1) Horrid head pain–not your regular-type of headache, dizzyness (not vertigo); ankle weakness (they seem connected-a brain lesion thing, perhaps);

    2) Continual burning in feet (sometimes through knees). A walking Lyrica commercial, to give a visual (I don’t take that).

    I’m not under a neurologist’s care right now (what’s the point, other than costly MRIs to tell me what I already know empirically). 10 years now, no MS meds.

    I’m not a flower child purist, but I just don’t see the meds benefits, esp when I’m so very meds-sensitive. Succumbed to some Advil (didn’t help too much). Can’t handle slight tricylics for the pain (messes with my thinking too much, and the help wanes anyway). Yes, I’ve had my childhood shots–that reminds me, I’m due for a tetanus shot and will do that this week. (Stress abounds–not a good thing; hard to eliminate).

    So, does anyone else out there deal with such pain? And what do you do? Is anything effective for you? (If so, what?) Thanks.

    • Sue in Tx September 16, 2015 at 9:29 am #

      Jan1 :
      Yes, I have a particular headache I think is MS related. I had it with a major attack and I get it periodically. I take it as a warning to slow down. I’ve tried several approaches. I increase caffeine and ibruprofin, I treat any allergies with Mucinex and decongestant. Anti-histamine if needed. In texas right now ragweed and mold are at high levels and I have my special headache. Are allergens triggering an immune response and bothering my MS or is it just sinus? I don’t know. Ginkgo Bilbao and gingsing both increase blood flow to brain if I recall correctly, so on occasion I will supplement or take tea. Keep blood pumping to the brain!

      With re to pain, I’ve tried a lot of meds my
      Neuro gave me and I didn’t like side effects so I just deal with it. But I do think it’s beneficial to have a neurologist to check in with every once in awhile. There have been a lot of changes in the past 10 yrs for MS treatment. Also, dMDs have shown to slow disability. Keep the faith, and know many understand.

  8. Liz September 15, 2015 at 3:43 pm #

    My life is a juggling act. I try to take as little medication as permits to survive the pain – tegretol and gabapentin – and still be able to act normal and use my brain. Consequently I’m in chronic pain. When I have a flare up of the dreaded TN pain, my husband and I both sit down and drink shots of Makers 46 whiskey.

  9. Jan1 September 15, 2015 at 3:58 pm #

    Thanks, Liz… I actually tried Gabapentin/Neurontin very early on (and before I knew pain as I know it now). Meds-sensitive me couldn’t handle it: too drugged of a feeling, unfortunately.

    Now, that last suggestion… just came back from the store with a bottle of red wine–not a budget-killer variety, but fruit-forward and from CA. And dark chocolate. Like both!

    Prior to that, I had coffee with a woman I happened to meet at side-by-side H spots recently. We both agree–a positive attitude is huge (even amidst it all). And she is familiar with Richard.

    All I have to do is to flip on the TV to grab perspective. One day at a time here, and as much as I am able. I aim to bring purpose to my plate. Thanks for replying.

  10. David September 16, 2015 at 10:42 am #

    Its been a long time since I have made comment, computer problem, problems finally solved

    Anyway, I have only one that’s advice I try to follow

    I have not mastered this yet myself but its good advice

    Never compare yourself to what you were before

    Just try to move forward

    Be grateful for what you can do now and try to improve!

    • rm cohen September 22, 2015 at 1:41 pm #

      Easier said than done, my friend.

      R.

  11. Yvonne September 16, 2015 at 12:42 pm #

    So tough not to miss who you were for 28 yrs before the diagnosis turned from RRMS to SPMS. RRMS was a piece of cake because drugs worked and I was back on my feet. These last few years of SPMS have been difficult to cope and no flowery thoughts or rainbow platitudes help. I miss me.

    • rm cohen September 22, 2015 at 1:42 pm #

      Nothing but good memories of RR. SP sucks, but what are our choices?

      R.

  12. Jan1 September 16, 2015 at 1:09 pm #

    David I used to say, “Don’t compare yourself to others–just to your own self.” But what you said makes good sense, as well. Comparing at all really serves no good benefit: learning from others, yes; comparing–even to my earlier self–no. Thank you.

    David and Yvonne, I lost my skating, but because of MS gained writing as a replacement passion. I had to write for business before, but it was the cathartic writing of getting out my feelings of loss that sparked this. I try to improve upon my writing skills amidst the rather prickly everyday thorns of SPMS. (And Richard here provides some of that writing inspiration–great writing style).

  13. Jan1 September 16, 2015 at 1:10 pm #

    Oh, and Sue… thanks so much for your insight. I will also look into all of that. (I am in Texas, too. My husband speaks of allergies; I should also look into that).

  14. Sue in tx September 16, 2015 at 2:55 pm #

    Liz is correct too. A few shots can serve as a temporary but sometimes needed respite from the pain and spasticity. Truth be told.

    I try not to compare myself to others, but on occasion I will see a woman jogging or biking with her child and I get a pang of envy in my chest. I want it. My child does not share activities like this with me. There is no equivalent substitute. But I recently was reminded of my physical abilities at a clinic. Everyone around me was less mobile and far more impaired. I suddenly felt out if place, as if I walked into the wrong room. I wanted to leave. Almost as if I had an irrational panic that staying in room would equate my disability with theirs. I then got it together in mind and told myself how fortunate I was to walk and not to envy my more fit counterparts. It is relative. So yes, you can’t compare yourself to others. We each are on our own journey.

  15. Sandy September 16, 2015 at 4:42 pm #

    I was thinking today about the hackers that wrecked your blog/site. They remind me of the vandals that tip over headstones in a cemetery or smash windows in cars. Wrecking stuff for no good reason. Wrecking stuff that is important to others and costs money and headaches to replace. And even when its replaced or fixed its not as good as it was before and leaves its victims feeling like it never will be the same again. Comes out of nowhere and without reason….like MS. I am and R and r MSer. Big R for relapsing…little r for the remitting which seems to be less and less over time.

    But the vandals/hackers reminded me of my Rr. Comes out of nowhere…wrecks everything it can find…leaves me waiting for the “r” to start.. and I wind up not being as good as I was before. And I find myself increasingly superstitious or as Michael Scott said on “The Office”…I am not superstitious…I am just a little stitious.

    • rm cohen September 22, 2015 at 1:44 pm #

      Hackers remind me of MS. They attack without cause.

      R.

  16. Jan1 September 16, 2015 at 10:25 pm #

    After reading the recent posts, and then scrolling to the top, Richard now can take a victory lap (with Brooke, perhaps), as your site appears to be functional once again. I’m going to take some joy in knowing that something is all functional again!

    • rm cohen September 22, 2015 at 4:55 pm #

      Praise the god of your choice.

      R.

  17. Linda September 19, 2015 at 3:54 pm #

    I’ve missed one of the highlights of my day. Thank you, Richard, for bringing all of us together again!
    FALLS! After a fall n the restroom of an Infusion Department last year, I have suffered tremendously. What a distraction from the MS problems. I don’t recommend it.
    I had the walker with me, but I fell into the walker hand rail and suffered a fractured, displaced rib. A few weeks ago, the fracture had healed but the pain in my chest wall was a 10! I found out that I have Costochondritis. It’s an inflammation of the cartilage that connects a rib to the sternum. Patience! In time, it should heal.
    The MS is acting up with a withering drop foot that has a mind of it’s own.
    My biggest priority is NOT FALLING AGAIN! Even though falling into the walker caused my injuries, I just must use it!
    Trying to use common sense with the aids that are necessary. The MS is crappy enough! So, I, even though I hate it, will suck it up and play this challenging game safely!
    Anybody else have injuries from falls?

    • linda September 21, 2015 at 1:55 pm #

      I am a below the knee amputee due to a fall I sustained on my son’s property, in the country. I was running after his dog, not watching where I was stepping, and I stepped into a hole, fell, twisting my ankle, shattering bones in my foot and ankle. The surgeon put everything back with metal plates and pins. He attached a external fixater, I was in hospital several days. I went to a nursing home for rehabilatation once the fixator was removed, For three weeks until my followup appt with the surgeon. During this time, once the doctor received instruction from surgeon to clean the wound daily, my leg became infected, but the surgeon was not informed since the followup appt was in 5 days. By the time I kept the appt…..the surgeon was shocked at the condition of my leg, back to hosp…subsequently, amputation.

  18. Jan1 September 21, 2015 at 8:24 pm #

    Linda (a different Linda than the prior, I’m assuming…), must comment that I am so sorry for all that you have endured. Life can be so challenging at times, can’t it? (And more so than many would know). Extending empathy right now.

  19. Louisa September 21, 2015 at 8:26 pm #

    Geez. lInda. Brutal . I am so sorry. Reinforces my belief that medical care is best avoided.