Relapsing vs. Progressing

[pvp27]

I strongly suspect the majority of members here have, or deal with, relapsing forms of the disease. I have a progressive form, and "conserve energy" is what my docs have encouraged.

Anyone know the stats on ActiveMSers -- relapsing vs. progressing?

I couldn't participate in anything requiring meaningful physical exertion, but I travel and live life outside of my home.

[ActiveMSers]

pvp27, I'm going to move this to the General forum. I think you might be surprised....

[Penguin]

Not been on for a while, saw the link on FB.
I'm progressing, I also had a lot of "conserve energy and don't push yourself too hard advice".
I ignored it, and I don't think I'd still be walking if I hadn't.
I do need to conserve energy, and rest before I reach the end of my reserves - but when it comes to exercise, the more I push myself, the more energy I have.
I built up from being a sporadic, occasional runner to running my first half marathon last year, and have recently taken up fell running up here in the Welsh mountains.....the fitter I get, the better I cope. In summer I need to sleep in the middle of every day, but before and after that sleep I'm more active than most of the "normals" I know!
The way I see it I need more exercise, as well as more rest than the average to stay fit and active.

[KarenMac]

relapsing v progressive

Primary progressive here (trying to be a rebel)

[Fit Paul]

Secondary progressive MS. I went from being completely sedentary and obese to exercising regularly, eating much healthier and less alcohol. I now maintain a normal BMI, my weight stays in the low 160's and my blood pressure is ideal. My walking has slowed down in the last year and my weight lifting has gotten harder to do but I am resolved to fight MS wherever I can.

[ladyjane]

PPMS here. I exercise regularly but have an EDSS of 6.5. I do have to conserve energy or my body ceases to work, like my CNS just temporarily shuts down for several hours at a time.

Also I'm new here, hi!

[Veronica]

Secondary Progressive here, too. Prior to my diagnosis, I had to stop cycling....and if it wasn't for my physical therapist, I would not have been able to have started up again. I can't run, or skip, or hop on one foot, but because I continually stretch, do balancing and strength training ( only talking about 5 and 10 lb. weights here) I have been able to add skiing in the past several years, got back to gardening, and am working on improving my walking....which was down to a city block and a half before the walking got very sloppy and my legs tired extremely. I agree with others here, the more I exercise the better overall I feel. It is worth the recovery period after of barely being able to walk.... My PT recently reminded me that exercise ( extreme or even moderate) releases cortisol.......a natural STEROID...... tamps back the inflammation.... "Exercise is medicine for my MS" is a mantra of mine... If it calms down the MS and helps my body fire up new connections, why would I ever stop?

[MindyWatt]

My first post on this forum!

SPMS here and have given up all structured exercise since Feb 14 when I found even walking around the supermarket too much. Breaks my heart; I used to regularly snow ski every year until I kept falling due to balance issues in Apr 13. Am excited to begin the research of how to start exercising again.

Should I find an MS experienced physical therapist as a starting point?

[AMFADVENTURES]

RR but probably transitioning to SP here. I've managed to maintain a normal brain volume and extend my mobility by at least 10 years so far and I hope to get several more years out of this old bod, MS and age willing.

MindyWatt, by all means, get a physical therapist or a personal trainer to get you started again. If you can find one who is familiar with MS, that would certainly make sense. Hopefully you will be pleasantly surprised by how much function you can recover.

[pvp27]

One of the significant manifestations of my MS is an extremely debased walk. Not sure how I can participate in any activity requiring me to stand. Run a marathon? Absolutely impossible to walk from my chair to the front door without a walker or cane.

[Veronica]

Really sounds to me, pvp27, that you could use the expertise of a PT with MS experience. Based solely on my experience, I would hope that if you could find such a professional, the therapist would start with very small increments to help you build back some of your strength. It all takes time and committment to get the connections and strength going. I have seen the evidence over and over in person of how we can gain back with the right therapy. And we all don't need to run traditional marathons... everyone's gains and accomplishments are so individually based. One person's stroll in the park is another's marathon...
If you haven't already, I'd check out some of the research studies that Dave has posted under Exercise and MS....covers this topic for the wide range of how MS affects us

[garyp]

Yoga or Pilates or similar?

Hi PVP27:

Have you explored something like Yoga or Pilates? Or swimming?

Everyone: I think Fat Paul deserves a new user name....I am thinking "Beating The Odds" or something like that

[LivWell]

Everyone: I think Fat Paul deserves a new user name....I am thinking "Beating The Odds" or something like that

Rad Paul?
Power Paul?
Paul-o-mite?
Mighty-P?

[Cvfactor]

I came to be diagnosed with RRMS after first being attacked with an aggressive disease called ADEM. I used to have to ration the amount of walking in a day I did otherwise I would be exhausted by days end.

I think researchers are finding that when the myelin sheath is destroyed, profound changes occur within the axon in an attempt keep signal conduction, however these changes result in an enormously higher energy demand in the demyelinated axon than a healthy axon. This may also usher in the death of the axon.

Looking at it from this perspective, I started taking supplements that are said to offset the axonal changes in the demyelinated axons:

http://tamar.tau.ac.il/~eshel/Bio_co...0cognition.htm

Personally this combination has helped me very much.

[Daremoon]

RRMS and believe it's progressing to SPMS.

I have worked with a PT that is MS certified and found this to very helpful and I would recommend this. In lieu of doing what I always used to do, she showed me a variety of options to do instead. She said I have a Type A personality, and being a guy she's not going to say "You can't do this" but she will provide options.

I've progressed with Spasticity, drop foot and falls. Her recommendation was to go from my type of jogging - not very good form - to Nordic Walking using Trekking poles. It's not the same, but it does help me not fall or have controlled falls, and I'm moving at a better pace. I just keep the Million Dollar Man theme or Matrix movie in my head - slower is faster.

Another thing I was introduced to was Wii Fit Plus on Nintendo's Wii. My PT said that, for myself specifically, I need to move from "having" to workout to "having fun." The game is a blast - I do Cardio and Balance activities on it. It also has Strength and Yoga type exercises I haven't tried. I just have to go through and figure out what best I can do or need to do.

Favorite game is Snowball Fight - I've got Miis - characters of my family and friends - and it does prove satisfying to throw a few snowballs at the wife...on the game that is (can't outrun her anymore).

So yes, 1) get physical therapist that is familiar with MS 2) Nordic walking - or find activities similar to what you were able to do and 3) Wii Fit Plus - good for yourself and can involve the family.