Good Morning My Friends,

     There have been no miraculous improvements or unexplained back slides. This is the time for bearing down and sticking with it. When I was in the military, this is the time during those 20 mile marches, or 5 mile morning runs, when you kind of just space out and though you’re putting one foot in front of the other, you’re somewhere else.

    My point is, this is the part where you must get from here to there, and do it in a step by step basis. Nothing Pretty, just necessary. As I have stated before, My Physical Therapist (PT) Rick Meyer, is also a sports therapist. He has been my therapist since before my

Hematopoietic Stem Cell Transplantation

(HSCT). Now that we are working together again. He has seen and shown me where there are improvements. He and his fellow PT that I work with Seamus Meteer, take turns week to week.

    Rick had not seen me in two visits. The wife came in with me (To see what or how she can help at home). There are some things I cannot do on my own. Rick was going through the different exercises, and having me do the normal things. He brought up that two weeks ago I could not do some of the things I am now doing! Also, he was noticing that when he was providing resistance (Mostly Hamstring Exercises), it is getting a lot harder when resisting. Ergo, my hammy’s are getting stronger. He wants to continue working on these areas for now, after a certain point, which neither of us now know, we will begin working on the balance thing as well.

    One of their main points are, they are just not familiar with what reaction to expect after HSCT procedure. Rick keeps saying, “Carl, this is cool. We just have to learn together! We need others to do this so you are not a One-Off”. Recovering from Primary Progressive Multiple Sclerosis (PPMS) is just not something you see every day. This is a “Game Changer”! The main thing is HSCT halts the progression of MS. Relapsing Remitting MS(RRMS), Progressive Relapsing MS(PRMS), Primary Progressive MS (PPMS) and Secondary Progressive MS(SPMS). HSCT is the ONLY known procedure with medications that actually halts MS. One Time Procedure. What upsets me is, it is not approved by the FDA, NIH, or any other government agency around the world. It drives Me and others crazy! It has been performed since 1997 for MS!!

Taken from Wikipedia:

“Multiple sclerosis

Since McAllister’s 1997 report on a patient with multiple sclerosis (MS) who received a bone marrow transplant for CML,^[57] over 600 reports have been published describing HSCTs performed primarily for MS.^[58] These have been shown to “reduce or eliminate ongoing clinical relapses, halt further progression, and reduce the burden of disability in some patients” that have aggressive highly active MS, “in the absence of chronic treatment with disease-modifying agents”.^[58]”

    Unfortunately, things are backwards as far as HSCT is concerned. They say though it has proved successful, we don’t know that it is completely safe yet. I feel it has been proved successful enough to be approved, like the DMDs, while they continue to isolate any contraindications or side affects. I have seen none, but I am sure the Doctors performing the procedure could and would state them. Well you look at ALL of the Disease Modifying Drugs (DMDs). Somehow those medications, such as Tecfidera, Abaugio and Gelenya to name a few, have been approved for use. (None of which are for PPMS) Now, these Meds have such rough side effects. Click on the links (Names), and go to the Side Affects tab. For instance, here is one of the things about Tecfidera:

“Although its exact mechanism of action is not known, Tecfidera is thought to inhibit immune cells and molecules, and may have anti-oxidant properties that could be protective against damage to the brain and spinal cord.” And the side affects:

I have only listed three of the most common DMDs.

Here is a 6 minute recording.  MS Cost

I will continue to fight the establishment of this and try to get more political heads to see it. But the Pharmaceutical Lobby is BIG and STRONG!!

This is my update for now,

Love You Guys, as always

Carl