(Part 3) Top products from r/MultipleSclerosis

I have been struggling with the same thing, after years of being what some people might think of as a bit of a workaholic, once I got to “Now I can’t work, what do I do” (After I got done struggling with “Now I can’t work, who am I), this is what I came up with:

 


Exercise: Everything I have read thus far, highly encourages persons with MS to get as much exercise as they can get. All of the stories I read about MS that make you think “I would like to experience what that person is experiencing” start out with “I got MS, and I thought my life was over, but then I got very serious about sleep, diet, and exercise”) This gentlemen just posted a very nice one on this very subreddit: https://www.reddit.com/r/MultipleSclerosis/comments/ca5lem/something_uplifting_after_two_and_a_half_years_i/
One of the challenges for me was as someone who used to be fairly athletic years ago, for me exercise was a way to enjoy the wonders the human body was capable of, and going for a short, shuffling walk at the end of which I was exhausted felt… I don’t know, not great. At that point I went to a talk on MS and one of the doctors that was speaking talked about the importance of exercise, and relayed a series of stories about exercise and MS. One of them was about a gentlemen who had lost the use of everything but his left arm. His words were something like “That arm is one of the most important things going on in my practice, it’s the arm he uses to order food, to facetime with his children…”, and then he went on to describe the stretching and exercise he would do to try to preserve as much function as possible.
Some days of course are better than others, on the good ones I try to get in as much exercise as possible. On the bad ones, well I can do less, but I try to do what I can. One thing that has helped for me is thinking of the MS like a foe. It wants to destroy you, take things away, crippled you (I realize this is silly anthropomorphizing, but I feel like it helps me maintain a good state of mind). On the days I feel good, it makes it easier to go out and do what exercise I can, it feels like I am gaining on my foe. On my bad days, I think “Alright, you got me today, but let’s see how I feel tomorrow, perhaps the MS leaves a hole and I can slip through”. Somehow approaching it this way makes me feel slippery and determined, rather than crippled.

 



Reading: When I was younger I read a great deal, but it fell off as my career picked up. I got to a point where I would only read a handful of books a year. Now with more time, I have been spending more time with a book.
I recently finished Sapiens, and very much enjoyed it: https://www.amazon.com/Sapiens-Humankind-Yuval-Noah-Harari/dp/0062316095
I am now working my way through the histories of Herodotus (and am finding them fascinating): https://www.amazon.com/Landmark-Herodotus-Histories-Robert-Strassler/dp/1400031141/ref=sr_1_1?keywords=landmark+histories&qid=1562946514&s=books&sr=1-1

 


Watching: The wife and I watch some TV together, and we have both been on history kick. We have been watching some of the great courses, and really enjoying the experience. Some of our favorites:
https://www.thegreatcoursesplus.com/show/the_rise_of_rome?tn=Also+By+This+Professor_0_3 Everything I have seen by Greg Aldrete is good, he seems to conduct creditable scholarship (For example, he calls out when historians disagree on some topic, shares the views of both camps, and THEN shares his thoughts), and he tells a fantastic story.
https://www.thegreatcoursesplus.com/show/living_history_experiencing_great_events_of_the_ancient_and_medieval_worlds?tn=The+Great+Courses+Plus+Online+History+Courses+_0_70 Robert Garland takes moments out of history and works to make them come alive. I would argue that (at least for me) he succeeds spectacularly in this series.
https://www.thegreatcoursesplus.com/food-a-cultural-culinary-history The history of food, and history told with an eye to how everything has been shaped by food.
In addition to these, there are countless other good ones. As someone who purchased some great courses in the past (at what were some fairly exorbitant prices even on their sales), I very much like their new subscription model where you pay a fee each month and have access to everything. You can try out a lecture and see if you enjoy the lecturer style.

 


Gaming: Weirdly, being sick has destroyed a lot of the fun of gaming for me. Before I got sick, gaming was a thing I enjoyed “After I did my work”. Now that I don’t have work to be done with, someone how I don’t feel like I have “Earned the right to game”. Not saying this makes sense, necessary, but of course we feel how we feel. I have continued to play EVE Online (which I played before I got sick), albeit at a much lazier pace. I played through much of the latest Zelda with my 6 year old, which was fun, and recently played through FAR: Lone Sails which is a quiet, atmospheric puzzle solving game that involves piloting a vehicle through a post apocalyptic wasteland. Despite that description, I feel like the game is more soothing then it is anything else. It’s beautiful made, it was an enjoyable experience.

 


In addition to this jazz, I have of course been spending time with my wife and children. After my last flare I was spending a lot (almost all) of my time in the house, and more recently I have been making plans to see friends. Because my energy does not last so long, I have been trying to do lunches, perhaps meet a friend on their lunch break at work. The lack of outside the family adult contact once I stopped working has been weighing on me, and having a chat with an old friend has been a real boost.

I admire your mom for her desire to stay active. I was also diagnosed the week before my 50th. A couple of key things of importance is hydration and staying cool. According to my neuro, hydrate, hydrate, hydrate. I struggle with getting the water down but find it easier to add lemon and hot water in winter just because I like warm drinks in winter. Also in the summer I try to stay as cool as possible and have a scarf which I put in the freezer and wrap around my neck to stay cool. There are many cooling vests available which I haven't yet tried and may be worth looking into as it is important to not overheat.
As for exercises u/LDP78 trained for a long cycling ride by starting slow and building up to it. Very inspiring. There are others who do run long races and marathons as my neuro went to cheer them on at the finish line.
A website to check out is the MS Fitness Challenge run by David Lyons and his wife. David was and still is a fitness professional and bodybuilder diagnosed with MS. He has a book coming out February 1, 2017 Everyday Health and Fitness with MS. I have pre-ordered mine and am so excited for it. https://www.amazon.com/Everyday-Health-Fitness-Multiple-Sclerosis/dp/1592337414/ref=asap_bc?ie=UTF8
As for other types of exercises she may enjoy swimming and pilates. Here is a great video for stretching, pilates for MS I just found https://multiplesclerosisnewstoday.com/2017/01/10/pilates-exercises-for-multiple-sclerosis/
I also like Jack Osbourne You Don't Know Jack About MS and Lisa Cohen Rockstar Women with MS.
I'm sure your Mom really appreciates your support. My boys are also a huge support system. I have told them I want/need to pick up my workouts and goals and I know they and my husband are my huge cheering squad. You are doing a great job educating yourself about MS to support your Mom. Keep up the great work!

I like this a lot:

Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery

and they have a pretty cool website: https://overcomingms.org/

I also like Terry Wahls book:

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles

Her website: http://terrywahls.com/


Aside from that, I've done tons of research on the drugs and methods of diagnosis. Not all of it is pretty. Some of the harder to find stuff is pretty eye opening.

Basically MS is a huge pile of different symptoms that they just group together under the name. They don't really know how or why it happens, or why the drugs they give (sometimes) help.

There has been a large push lately to diagnose MS earlier. 10 years ago they'd not have told me I have MS. In one way this is good for patients, they can get the help they need earlier.
On the other hand, the docs might miss something else that they just group under the big umbrella they call "MS".

For example, Lyme disease might look like MS in some people.

As for drugs, the first ones they put everyone on, Interferon (rebif, avonex), and Copaxone have a horrible success rate. Something like 30%. That combined with all the side effects really makes them iffy. The doctor won't tell you that, and it defo is not advertised on the more mainstream (drug industry funded) MS "help" sites.

Hope that gives you some ideas where to start. Don't believe everything you read right off. Defo do your research on the drugs yourself! And watch out for the trap on most ms help sites. There's a cult of drug worship that can be pretty toxic.

I say drugs can be useful. I wouldn't tell anyone to stop taking them, but they can only help an otherwise healthy lifestyle.

Take care.

Thank you. Yes I did. It was a soft rubber tip, and would break off. You can go to Walgreens, Target, Walmart, or wherever and buy new ones. They're super cheap.

Medline MDS805161 Aluminum... https://www.amazon.com/dp/B00083DFOW?ref=ppx_pop_mob_ap_share

I thoroughly recommend this book, as it helped me to understand and accept all areas of my diagnosis. The Multiple Sclerosis Manifesto, by Julia Stachowiak

http://www.amazon.com/gp/aw/d/1932603441/ref=redir_mdp_mobile/181-4688963-2717761

It is written in a method that is easily understood by all, and as such it is also a good read for anyone who might be involved with the affected individual.

Here are the exercises that my Occupational Therapist friend gave to my husband with MS for his hands: http://imgur.com/a/ixtcR

Sorry if they are poor quality, I was unsure of the original source.

She also said that in the baseball section of your sporting goods store there should be a contraption like this that would help: http://bit.ly/2erBCbZ

I also found this: Gripmaster Hand Exerciser Blue, Light Tension (5-Pounds per Finger) https://www.amazon.com/dp/B0006GBDZY/ref=cm_sw_r_cp_api_QB0PzbC25TWCA

My husband is currently doing 5 days of high dose steroids that hopefully help.

Oh, that sounds just miserable! I hope you feel better soon. This goofy-looking thing actually helped a lot with persistent knots and spasms in my back. I was kind of surprised how effective it was, actually. It might be a good option for between massages.

Of course I can :) - this is an intro text book that goes over a lot of stuff. https://www.amazon.co.uk/Disability-Studies-Interdisciplinary-Introduction-Goodley/dp/1847875580 - also, this lecture (https://youtu.be/p2rO2v3kdGI) by simi Linton is great and a really accessible basis, at least I thought so.

You might want to look into a large trackball. onus in that they don't require much space and are also good at alleviating carpal tunnel pain.

The kensington trackball is a great one

http://www.amazon.com/Kensington-Expert-Trackball-Mouse-K64325/dp/B00009KH63

Swipe file I've been compiling on cognitive decline over the last couple years:

• Dr. Rhonda Patrick + sauna use: https://www.youtube.com/watch?v=jL7vVG_CFWA
  
• Dr. Terry Wahl’s book: https://www.amazon.ca/Wahls-Protocol-Radical-Autoimmune-Conditions/dp/1583335544/
  
• Ben Greenfield Fitness podcast addressing protocol for dementia or Alzheimers: https://bengreenfieldfitness.com/2015/12/episode-340-full-transcript/ (see the 45min mark of the transcript for a listener question about protocol’s for Alzheimers)
  
• Dr. Trent Austin - Natural Treatments for Symptoms of Multiple Sclerosis: https://www.youtube.com/watch?v=-HTn8Xr3TGk
  
• Olive oil + Alzherimer's: https://www.sciencedaily.com/releases/2017/06/170621103123.htm
  
• Cognitive Decline Protocols: https://www.reddit.com/r/Nootropics/wiki/cognitivedeclineprotocols

My neurologist recommended giving this a try. The Autoimmune Paleo Cookbook. http://www.amazon.com/gp/aw/d/0578135213/ref=mp_s_a_1_1?qid=1419802096&sr=8-1&dpPl=1&dpID=61ItZmIggTL&ref=plSrch
Just picked it up, but haven't tried it yet?

Many of the local chain supermarkets have it, Vons, Ralphs. Local pharmacies do as well. But me? I don't like interacting with humans, so I just buy it on Amazon.

Want to second the crock pot idea. Frankly, my wife and I were doing this well before I was diagnosed.

Prep on a Sunday afternoon, put it in the slow cooker monday morning, and by Monday evening you've got a few days worth of meals.

And, I couldn't recommend this cookbook more highly. They've got a few recipes in there (specifically, Tomatillo Chicken Tacos and Pozole) that are staples now in my house.

https://www.amazon.com/Slow-Cooker-Revolution-Americas-Kitchen/dp/1933615699

Just your definition of "(was) stiletto wearing dance party" reminds me of a book I read about somebody else's MS diagnosis. "Awkward Bitch" by Marlo Donago Parmelee. It was reassuring reading about somebody else's diagnosing difficulties and reassuring at the same time.
http://www.amazon.com/Awkward-Bitch-My-Life-MS/dp/1438990480

Chillow! I can't sleep without mine now.

What I'm taking isn't on there specifically but I think there's similar magnesium types.

https://smile.amazon.com/gp/product/B000GFJJKQ/ref=oh_aui_search_detailpage?ie=UTF8&th=1