Thanksgiving

I look forward to Thanksgiving. I like the holiday. I am a New Englander, so my positive attitude makes sense, for as long as it lasts. Family, friends and food. Who would have trouble with those? Two of our children are heading home. Seattle is a bit far for a turkey dinner. A wonderful energy will return to our usually empty house.

As always, ill health is the unseen guest at the table. Actually, my physical flaws are seen, even obvious. But nobody seems to notice anymore. The limp and slurring, clumsiness and fatigue are just part of the landscape. And then there is the matter of giving thanks.

To each his/her own, I say.   I am pleased I am still on my feet, that I have a life outside the house. I am in the homestretch on the book. The ax falls early next year. Most of all, I an grateful I can laugh and love and do not take myjourney too seriously. May you live in interesting times is either Chinese best wishes or a curse. I will leave that in the eye of the beholder.

Lastly, there is you. I am a lucky guy to have all of you, or whomever is left after I jumped off my moving train. I will be back by March. Until then, happy holidays.

31 Responses to Thanksgiving

  1. Jana November 20, 2016 at 6:25 pm #

    And Happy Holidays ro you! Looking forward to your new book and to your return!

  2. Jack November 20, 2016 at 8:32 pm #

    Have a good Thanksgiving. In spite of all the tribulation, being with family reminds us that there are still things to be thankful for.

  3. Pat H November 21, 2016 at 6:15 am #

    Still here, in both the blog and the physical sense. As the days click by I am more aware that there are a finite number allotted. Don’t know the number, but it is not infinite. Sometimes it seems to be a race between maintained abilities and the game clock. Even so, still in the game and thankful, for sure. Play on.

  4. Kat November 21, 2016 at 10:01 am #

    Still here! Happy Thanksgiving to you and to everyone who follows this blog.

  5. Joan November 21, 2016 at 1:38 pm #

    Peaceful and safe holidays to all

  6. Jenny November 21, 2016 at 3:49 pm #

    Best to all during this beautiful holiday season! “Hoping” you step back to see and feel love and peace.

  7. Dale November 22, 2016 at 12:21 am #

    Me too, so glad to see you and some friends again. I’m always hopeful when I log on these days. So few people can relate to what is going on with us that after a while it’s not worth explaining. So now its time to be grateful for the here and now, thanks for sharing the ups and downs of this journey. Enjoy your time with family! We’ll be here when you have time.

  8. Andrew November 22, 2016 at 4:35 am #

    I extend my best wishes for you and your family to have a happy Thanksgiving together. To all my MS family, I wish the same. I am very blessed to be with “family” I choose as most remaining family by relation are too far away, or no longer living. I know I will be at a table of like minded friends this holiday. No biting my tongue over opinions or views I take issue with–how relaxing. May all of you find peaceful and delicious moments.

  9. grandma November 22, 2016 at 11:31 am #

    I am thankful that you are still writing your posts. I look forward to them and I am looking forward to your book! Happy Thanksgiving and Thank You!

  10. Mari Dias November 22, 2016 at 7:11 pm #

    Hi Richard!
    Unfortunately it took me this long to read “Strong at the Broken Places”. I’m ashamed of myself! Anyway, Sarah’a story really resonated with me ( as in sure it did with thousands of others!) I hope since the book’s publication Sarah has opted for the surgery which I did at age 21 and never looked back. My life changed dramatically ( for good) and if she hasn’t I strongly encourage her to do so! How one can opt for a miserable, painful existence fraught with hospitalizations and surgeries over “The bag” is surprising to me. In fact I know of a man who chose death rather than an ileostomy. Life is so grand and full – my epithet will read ” I’m not finished living yet!” Even if I am a 110! I have 2 children, am a scuba diver, a Fulbright specialist to South Africa, a college professor, a therapist and a radio talk show host. There are no limits!!

  11. Jan November 22, 2016 at 9:28 pm #

    Happy Thanksgiving, Richard and all.

    This 2016 has been overall rough, culminating in my recent purchase of a Nova rollator. Head off; feet hurt even more from nerve damage; eyes dry. Will say that the rollator, despite my joking about going incognito at age 94, has been a great help (my back previously hurt from poor posture with the cane). Researched it, but still spent $70 more to purchase it locally than from Amazon – I like and use the latter, but the people at the local med supply store used time, expertise, and care: Small Business Saturday is coming on 11/26, don’t you know.

    Still something positive in each day – thankful for that and for people (those who are close, plus when I am “social snacking” on errands).

  12. Yvonne Brewer November 23, 2016 at 11:20 am #

    Hi everyone. Glad to see man have stuck around keeping ourselves busy but still checking in. Thanksgiving for Me: just another day trying to maneuver around a lot of people with my rollater! The history of the holiday is a fantasy to distract from the horrible things that actually happened. So I guess my fake smiles to hide my aches and pains along with trivial conversations about health are appropriate. Holidays are a little bah humbug for me but I appreciate my family and friends (just in small gatherings) I’m not the social butterfly I strained to be in the past. So I guess I’m thankful it’s just 1 day!

  13. Linda Lazarus November 24, 2016 at 7:33 pm #

    Hello to everyone and happy holidays to all. Here in western MA where we have a small farm, I managed to crawl my way through the entire growing season. I am enormously grateful for that.
    Linda

    • Dale December 6, 2016 at 12:07 am #

      Linda I kept thinking about this. Good for you. It makes me want to keep trying. I can no longer sail but I can still splice rope and find a way to hang all the buoys I’ve collected over the years. No one else seems to care about those but I do, each has a story. Farms are wonderful, my old boss was a gentleman farmer and I learned a lot from him. It’s a really noble life. I admire anyone that can do it successfully.

  14. Barb O. November 26, 2016 at 2:24 pm #

    Hello All! I’d like to wish you Richard & Meredith & family & all of you MSers & your families a very safe and “healthy” (I guess that means in spite of MS) Holiday Season. Also thank you Richard for the Journeyman Blog & your wonderful books I look forward to the new one! Until then let’s just hope the New Year brings peace, happiness & perhaps dare I say, a cure or at least a treatment to give us all a glimmer of hope.

  15. Ken November 27, 2016 at 11:49 am #

    Happy Thanksgivng Richard,

    I always look forward to your comments, so glad you will be back again in March. I am learning more about living in the present and giving thanks for the good things that are in my life each day, without future tripping or regretting the past, which is wasted energy, it is “the past”. the only things that matters are what is before me this moment, and for those things I give thanks. Have a good day, can’t wait for the book, take care,

  16. Christopher November 30, 2016 at 11:35 am #

    Happy Holidays to all. May the new year bring new hope and new possibilities without more suffering.

    December 3rd is the United Nations designated Day of Persons with Disabilities. Interestingly started about six months before the first MS drug Betaseron was approved for the treatment of MS.

    http://www.un.org/en/events/disabilitiesday/

  17. Yvonne Brewer November 30, 2016 at 7:08 pm #

    So since we’re talking a amongst ourselves in this seasoned group anybody ever tried antibiotics to see if you noticed any difference? I know all kinds of things have been tried in this group and the idea of antibiotics has been around a while. I’m also revisiting the idea of Novatrone which I also poo-pooed many years ago. These last 3 years was SPMS ,with no money for expensive treatments have me revaluating my position on options. Tried diets but not disciplined enough for things like Wahl’s. Just curious

    • Ken December 14, 2016 at 8:44 pm #

      I have had many bladder infections with constant need for catheter, I am instantly worse off, symptom wise, with an infection. Daily anitbiotics has become an unwelcome necessity, definitely improves the symptoms.

  18. Christopher December 1, 2016 at 7:01 am #

    Antibiotics never did anything for me. But I’m also pretty sure my MS wasn’t viral in nature (multiple sclerosis is in a unique group of neurological conditions as it can have several different etiologies).

    Novantrone (mitoxantrone) is known as a “last resort” drug, because of the serious side effects–most notably, cardiotoxicity (usually in the form of CHF, or cardiomyopathy). It’s a very strong antineoplastic (anti-cancer) chemo drug. Because the cardiotoxicity risk is cumulative, a patient can only have about 14 lifetime doses. So if the drug doesn’t work, you’d just be left with more problems on top of the MS. Also, you’d have to put up with all of the nasty side effects of chemo drugs. When I took Cytoxan (cyclophosphamide), the side effects were pretty awful. I could only imagine how much more miserable it would be with a much stronger chemo drug–the nurses wear thick gloves when handling Novantrone, which is a kind of ugly bluish-green fluid. I’ve seen it before in the infusion center, and it’s scary-gross looking. Blecch!

    I really do understand where you are with your MS, Yvonne. My journey with this disease has been really difficult and frustrating as well. I’ve taken about 10 different drugs so far in 14 years [Betaseron, Solumedrol, Copaxone, Cytoxan, Cellcept, IVIG, Tysabri, Tecfidera, and a couple others I can’t remember], and my disease has–what the doctors call–“broken through” every time. I remember my first second-opinion was with Dr. Stanley van den Noort at UCI. Very nice man, and a great doctor and researcher who unfortunately passed away about 8 years ago. He told me that he would do what he could to help me, but that MS is wildly unpredictable. Some people have a relatively mild case of relapsing-remitting, and others are’t so fortunate. I’m in the second group. I keep believing that things will change for the better. I just have that hope and I don’t know why… yet. In the meantime, there’s also new drugs that look promising. Like right now is Lemtrada, which has been getting very good reviews. And hopefully very soon, ocrelizumab (likely Feb/Mar 2017 FDA approval). Then the new antisense (VLA-4 targeting) drugs come out in 2017/2018, as well as the new anti-LINGO drugs which promote myelin repair. Ocremizulab, btw, is the first ever MS drug developed for progressive disease, both SPMS and PPMS. It is basically a safer reformulation of rituximab, which is a chemotherapy agent usually used for leukemia and lymphomas. It goes after the CD20 phosphoproteins on B-cells to reign them in and stop the wanton destructive inflammation. If that’s all way too technical, please let me know. As far as diets go, there’s too many variables to account for to say whether a strict diet will help any certain person. That’s one of the reasons I’m a big proponent of individualized medicine, also called personalized medicine. There’s big advancements daily now in epigenetics, proteomics, and genetic sreening that will make medical therapies more effective for more people. And I also know they can’t come fast enough for some of us.

    Just keep that hope that it’ll get better, and keep it close. Trust me… I know how hard that is, because I wrestle with it every moment of every day. We’re almost there at the point where this suffering will just be a bad memory, and we can all start moving on with our lives without that huge boulder we’re pushing up that mountain every day. I just know it.

  19. Yvonne Brewer December 1, 2016 at 9:44 pm #

    Christopher you always a seem to have the latest MS info so thank you for sharing. I’m usually rolling with this stupid disease through all it’s freaking manifestations and morphing but transitioning this time has been hard. I was used to going in the hospital, getting Solumedrol and bouncing back. Now there is nothing but progression so I’m frustrated. I haven’t taken a “prescribed” drug in about 2 yrs to relieve symptoms. My neurologist is very nice but useless except for paperwork as he doesn’t know what to do with me now that I am SPMS. Keeps telling me what an awful disease it is because it’s such a mystery. He doesn’t keep up with what’s the latest. I miss my old neurologist who I had to stop seeing because I couldn’t drive that far anymore. He was younger and open to researching if it was something he hadn’t heard of before as he knew I was the curious MSer that was open to trying. Sigh….after 35yrs I guess I’m frustrated we aren’t seeing ANYTHING new that doesn’t cost a fortune to try so I’m grasping at old solutions hoping to at least slow progression. I know I’m singing to the choir as the band plays on. Thanks again for all the information without the BS of flowery talk. I can’t hear hang in there and keep a positive outlook one more time. Sometimes ya just need to scream!

  20. Christopher December 2, 2016 at 5:58 am #

    Screaming is good… in small measures. Just remember to close any open windows. :p

    What state are you in? And I mean geographically. I might be able to put you in contact with an MS specialist instead of just a general neurologist. Surprisingly, many neurologists aren’t very up to date when it comes to MS and its treatment. Multiple sclerosis is still the weird stepchild that everyone knows of but is unfamiliar with, except maybe one or two close relatives. Even Google searches can be hellishly frustrating. If I’m not too familiar with the state where you live, I can at least push you–or anyone here, for that matter–in the right direction for good resources that should help.

    I’m wouldn’t tell you to “hang in there,” because you’re already doing that. Even as disappointing and frustrating as it is. And forget a positive outlook… I’m pissed off almost every day. There’s a house of sorority sisters next door to me that’s still trying to figure out why their trash can always has a used commode chair bag the day after they throw a party. I mean, seriously… you post here more than me. People who have given up don’t post their thoughts to the world. They hide away and become misanthropes. I wouldn’t ‘blow smoke’ because it doesn’t help anything. It’s awesome you keep moving forward, even as hard and unrelenting as MS is. If you need to, then hell yeah… just go ahead and scream! Or cry, or laugh maniacally. It helps.

  21. Yvonne December 2, 2016 at 9:54 am #

    Have done all of those Christopher sometimes in succession! I’m in Palm Beach Gardens Florida my neuro was about 20 mins south in Delray Beach and I was sad to leave him as he worked in Miami where they do research and trials:-(
    Just keep posting here and that’s loads of help.:-)

  22. Dale December 6, 2016 at 12:14 am #

    Christopher you continue to be an anchor for this group, it really helps. We’ve all seen the BS. You don’t have to answer this but I’m curious how long since you were diagnosed and how old you are. Not that either matters but you seem exceptionally well versed on the ins and outs of the latest research. Again feel free to keep that private, I’m just trying to figure where I fit in sometimes.

  23. Christopher December 6, 2016 at 6:09 am #

    Dale,

    I don’t mind answering.

    I was Dx (abbr for diagnosed) in August 2002, 18 months after my first clinical symptoms. I say ‘clinical symptoms’ because if I look back I believe I was showing signs of MS going back to my childhood. Around ten or eleven years old I remember having these strange episodes where it would start with a kind of perceptual disturbance almost like an epileptic aura. First was a feeling of deja vu, after which I would get dizzy and light-headed. Then all of the color drained from everything in my vision and took on a purplish-gray hue. I’m guessing that was a type of optic neuritis. I would have to sit down or I would fall down, and at that point all sound got muffled like I was underwater. I would just sit there kind of spacing out while the other kids would ask, “what’s wrong with him?” My brothers would always ask me if I was alright and tell the other kids to “shut up… he just does that sometimes.” It never scared me. Actually as a kid I thought it was a pretty cool experience that I thought only I could have and no one else. Wasn’t until adulthood that I began to realize that it was the precursor to something much more serious. Then there were isolated issues with numbness, balance thrown off and other things that made no strict sense in isolation. So I never paid much attention to them; I just thought I was awkward. When I started falling and couldn’t get up for 10 or 15 minutes, then I knew something was very wrong. So I could have had MS for years, but I wasn’t Dx until 14 years ago.

    Oh… and my age? I usually say to people that, “I’m old enough to know better, and young enough not to care” because it’s really difficult for anyone to tell how old I am just by looking at me, or hearing my voice. I can tell you that I am a Gen-x’er.

    And thank you for the compliments… I don’t think of myself that way, I just want to be helpful. They’re really nice to hear though. I know I write a lot, and I apologize if it’s too much.

  24. Dale December 7, 2016 at 12:42 am #

    Good Lord, never too much. I’ve grown to trust your information more than my old Neuro. It is clear, honest and to the point. Hopeful but not unrealistically so. I think most of us had symptoms long before officially being diagnosed, but bodies are weird sometimes. The annoying thing about this is that with most other illnesses there is usually some glimmer of hope you’ll get better. I’ve given up on that but try not to let that show to others. I was diagnosed officially in 2001 and thought I could handle it. Now I’m not so sure in the long haul. Well one day at a time. Thanks.

  25. Jan December 8, 2016 at 1:21 pm #

    Dale, have to say that I totally hear you about not being sure of being able to handle it… right now the walking and pain are rather horrific, yet the world around me is swirling about as usual. But I have no choice other than to handle it.

    This certainly does bring about a different perspective on what problems truly are, doesn’t it? I have some other ones, but the health stuff beats them all.

    Still one day at a time, and thoughts about being grateful for certain people and circumstances helps.

  26. Yvonne December 11, 2016 at 8:59 pm #

    I appreciate all the information I have gotten from this group. I ended up trying Biotin as a result of hearing about it hear as my Neuro is nice but clueless so this place is my resource. I don’t even mind the foofoo sunshiny stuff because I know folks are trying to be helpful 🙂 It’s nice people are still checking in now and then while Richard is away!

  27. Dale December 12, 2016 at 12:49 am #

    Yvonne did you join the Biotin for Progressive MS Facebook group trying to replicate the MedDay trials with 100mg 3 times a day that supposedly showed some success for SP and PPMS? I think Laurel Whitman is still the admin. They’ve really grown, folks from around the world it seems. It is interesting that most note improved incontinence on the stuff yet that wasn’t brought out in the study. It is also interesting to see a wide range of abilities represented.

  28. Christopher December 13, 2016 at 5:54 am #

    I have a recommendation for you of an MS specialist in Southeast Florida.

    This is a recommendation I asked for directly from my MS doctor. My MS doc is Dr. Daniel Bandari, here in Southern California. He is fairly well known in the MS community, and you can actually see him talk about treating MS on Youtube. He recommended Dr. Kottil Rammohan, at the University of Miami–which I know is quite far from you. He specializes only in multiple sclerosis, and is an immunologist as well as a neurologist, which is important in dealing with MS. Also you mentioned your previous neuro was in Miami, so it would be quite a coincidence if this is the same doctor. I’m sorry I couldn’t find someone like this closer to you, but perhaps Dr. Rammohan may be able to recommend someone else near you.

    I also found a couple other places run by the Cleveland Clinic in Palm Beach Gardens and in Weston, but I haven’t gotten enough information yet to see if those doctors would be helpful or just more neuros who just deal with MS patients infrequently. I’ll keep checking though.

  29. Yvonne December 19, 2016 at 9:20 am #

    Thanks Dale. I joined the Biotin group about a year ago and they are great group. Biotin has only help with bladder urgency for me. Little thing but a BIG deal!
    Thanks Christopher. I used to go to the MS institute in Miami when I moved here in 1999. The Drs were wonderful and When Dr. Farronay opened his office in Delray I started going there as he kept up on everything MS. Unfortunately I can’t drive that far any longer so I ended up with a neurologist closer to home. I have gone to the Cleveland Clinic in Palm Beach Gardens where there was a wonderful Dr. but she was so busy you ended up waiting for a couple hrs in the waiting room for your appointment! Word was there was a minimum amount of people they needed to see to keep that office going. Business vs patient care:-( She left that office because of that policy and fled the state from what I hear. I so appreciate your help Christopher. I will try Dr. Rammohan’s office to see if they are willing to recommend someone specific and not just the laundry list of neurologist in my area!