Quest for Fire

[Windwalker]

Just want to tell you Good Luck and keep Fighting!

Bree

Thank you Bree

Was about 90% recovered at the start of yesterday's session. Did a quality 1 hour workout and actually felt better after the session than I did before.

Cog fog kicked back in mildly in the evening...today I am about 95% recovered. Two days off to fully recover.

I read my Tsyabri literature this morning. The message is clear; we must have a fighting attitude.

[rdmc]

Even better, (I didn't know he had an account here, but apparently he does) he paid for it himself but got his insurance company to reimburse him plus interest. There's a Youtube vid too.

http://www.msworld.org/forum/showthread.php?t=133955

Over at Wheelchair Kamikaze, Marc wrote an article about Dave's battle with the insurance company (and how he won, 2 fold, in the end.) Here's a link if anybody's interested.

http://www.wheelchairkamikaze.com/20...ent-beats.html

Another therapy that I was recently introduced to was E-stim therapy. I had a sudden case of foot drop develop in my "good foot" (I had had foot drop in my other foot for years) and since it was so new the neuro recommended PT with E-stim. It was very effective. I realized later that Dr. Wahl's protocol had no only involved diet, but also E-stim, so it may be one more thing to add to your arsenal.

[Nicoly3467]

Hi Windwalker

I wish you the best in fighting this progression and I hope you find a good medicine soon to help you and keep up with your physical therapy that sounds great!

Take care, Nikki

[RockysMom]

Please don't feel you wasted your time. I am extremely grateful for each and every response. Fact is I just don't buy into "crystals" or any other new age, totally outside mainstream medical science type of approaches. Stoic? I thought the post was quite passionate.

Windwalker, I understand about the not being into crystals but actually you are into crystals already if you use a computer, watch, radio, many medical devices, etc., they are in everything 😃 This is just a device with a type of crystal (amethyst) which has unique properties that can change electricity into far infrared light better than other transponders. The DoD uses them too as laser weapons because these do it better than other crystals. Far infrared light penetrates deep into the body as opposed to regular infrared which only warms the surface.

[Windwalker]

More PT!

My insurance approved another 8 sessions
Used two of them already...going on 5 full months of at home physical therapy.

Worked through some stomach issues to have a great session yesterday.

PT is not fun, I exhaust myself. The physical therapist sets a quick pace. At 53 yrs. old, I just don't enjoy it...I hope that changes in time.

Waiting for my first Tysabri infusion.
Always fighting that little voice that say's it's all just a waste of time and effort...I'm not going to get better.
Well, the status quo is just not working out...so, bring on More PT!

[Windwalker]

...and still more PT!

Burned through those 8 sessions, got approved for another 8 sessions. About to start one in 15 minutes. Love how I feel afterwards...kind of dread it beforehand.

This is just the starting point...6 months of PT! Tysabri infusions start next week. The hope is I feel better and can increase the number of PT sessions per week. Lifestyle changes.

Feel like I'm just at the starting line.

[Goldfinch]

Windwalker,
I did not read the other replies on here. SO if I echo anyone ele's thought you may discount them or disregard the repetition.

If I were in your shoes and the neuro I'd found was still on board as your treatmenet provider but was hard to reach...I'd call the phamraceutical company directly and enlist their help. Whoever manufactures Tysabri and or Gilenya (not coming to me at present although I was on Tysabri and am mnow on Gilenya) has an army of representatives willing to acquire another customer and frequently assist in communications between pateints, doctors, and insurance companies.

I think Novartis makes Gilenya....can't be bothered to look it up but Google is your friend.

Keep fighting, OP, as my neuro tells me time and again: Time = Brain. Sounds like you already know that, but he uses that philosophy in his treatment decisions and I am grateful for it.

[Windwalker]

...the paradox of MS

You can get physically stronger while at the same time continue to whither from nerve damage, existing or new, and lose capabilities.

For 6 months I have focused on my core, it has never been stronger. My legs have also benefited and are engaging better than they have in a long time. My arms...kind of neglected the arms, shoulders. One thing at a time...right?

Six months of relative "neglect" and my arms lose serious ground. The right arm stays decent because it is the workhorse, does all the heavy lifting. This is why the Tysabri, the rate of my disease course has to slow down. I can't get the upper hand unless it backs off a little bit.

My first infusion was on Monday. PT picks up again tomorrow. The Tysabri initially has had minor effect. My mornings are much better than my evenings.

A little bit, more than a little, of sciatic pain issues have developed I think due to the PT...the darn power chair does'nt help either. Will have to watch that but the PT sessions continue to excel.

[MSW1963]

Windwalker, I remember when stroke patients w/paralysis were sent home with their affected limb/s in a sling, in order to protect the paralized limb.

Of course that now antiquated form of treatment has been replaced with agressive PT to restore use of a limb affected by stroke related paralysis. Now the useful limb is 'restricted' in order to restore/'force' patients to use their paralized limb.

I hope that type of agressive PT becomes the standard of care for MS, along with the 'new generation' of DMTs.

Inspired by your determination and spirit, and all the MS Warriors out there.

[Windwalker]

The epic journey continues...

I'm dedicating this update to Rocky'sMom. I feel were in the same place at the same point in time. In the same boat, in the middle of a vast ocean, we must row to survive...

Starting a few weeks back, I'm on to phase II...the standing wall. How this wall has kicked my butt. My first "stands" were generously put, ugly...I won't even say the durations. I hold on to a disability bar mounted on the wall. I stand, facing the wall, holding on to that bar. It keeps me from falling over.

Then I got to the 1-2 minute mark. I try to do 5 "stands" during a session... standing straight. This has been my progression; 5 stands, total 8 minutes. Then 5 stands, over 10 minutes...each just over 2 minutes. Yesterday...5 stands, 13 min. 15 sec., two 3 minute stands.

I spent 7 months solidifying my core, now we stand, then we take steps.

The Tysabri? At this point, just got the 3rd infusion, it's more mild side effects that any physical benefits. BUT...there's something that makes me think small, incremental, positive changes are occurring. I can get by on surprisingly few pain meds some days, my spasticity MAY be lessening, there may be new flame being ignited... I don't know, but I'm more determined to walk than ever.

[Seasha]

So glad you are seeing some improvement, Windwalker! Keep up the good fight

[bree2013]

Windwalker - You are determined! Keep it up -- your journey is inspiration for a lot of folks. Even those that may not currently be in your position, can benefit from your perseverance attitude.

[pennstater]

Your strength is inspirational. Keep up the fight. Hope you continue to see small gains that eventually lead to more and more recovery. Will keep in thoughts. Look forward to more updates.

[RockysMom]

I'm dedicating this update to Rocky'sMom. I feel were in the same place at the same point in time. In the same boat, in the middle of a vast ocean, we must row to survive...

Aww thanks Windwalker. However, I wish that I were having PT twice a day instead of OT then PT. The OT only seems valuable to me in as far as the exercising. The other tasks are just, it seems to me, wastes of energy that exhaust me and make it impossible for me to do the important PT things like...um...walking.

I'm keeping up with this thread, am subscribed to it and wonder what your thoughts are on this? I never really had trouble with my upper body so why force me to do things that get in the way of the important PT stuff?

[Windwalker]

Thanks for the amazing support people...

RockysMom--- I think the OT is valuable. Especially if it is a functional kind of OT, like processes for getting in/out of bed and getting on/off toilet. I think you have a lot going for you. The upper body is so important, your lucky you have yours. We must not neglect strengthening that but the focus is so much on the legs in our case. It's the challenge, keeping up with it all.

My PT is moving at a faster pace than expected. Last session I stood wearing my AFO and holding on to a 2 wheel walker. If I'm going to take steps, this will be the "gear"...so might as well start standing with it. Did my first 4 minute plus stand...total of 15 min. standing.

The last several days I have felt, dare I say, strong. Previous to that a rougher week to 10 days. Oral surgery...root extraction, set me back a bit. There will always be setbacks. Tomorrow is another session, another day in the journey. Optimism might be creeping in but I guard against it. There is still so far to go.