Good Morning my ms family. How are we all today? I hope “YOU” are facing a day as wonderful as me. The sun is shining outside, I expect the temperature to be below 110F, no excessive heat warnings, and I believe I saw the possibility of some rain. I live in a desert so rain is always good and I love to watch the lightning shows that we get. Thankfully they do not scare my joint dog so they are okay.
Enough about me, let us talk about “YOU”. Let’s talk about Disease-Modifying Therapy (DMT). This is NOT medicine to cure “YOU. To make “YOU”, the way “YOU” were before diagnosis (Dx), to end ms in “YOU”. It is not that type of medicine. There is NO type of medicine in existence today that does that. There is no miraculous treatment to make this go away. “YOU” and I will live with this illness for a very long time. I have done 20+ years so far and all things considered, I have 15 - 20 years left. Do “YOU” understand that? This is a lifelong condition, it does not go away. The choices that “YOU” and only “YOU” make about your DMT are important. Very important. The reported side effects are NOT. I would suggest that unless they lead to death “YOU” ignore them. I am referring to the medicine that has the risk of PML. Look it up and do your own research, I am not advocating against or for any particular DMT. I would SUGGEST MOST STRONGLY that “YOU” take the strongest medicine that “YOU” can lay your hands on. I believe for Relapsing-Remitting ms (RRms) it is called Ocrevus. It involves a 6 monthly infusion I understand. There are side effects, but they can be managed. Ask about them, learn about your medicine. Do not live in fear or ignorance. We have available to us a vast wealth of knowledge and experience, today. Make use of it, do not stick your head in the sand, cry and wish it would go away. it will NOT. As much as I would like the best for “YOU”, “YOU” my sister or brother must make a decision and do for yourself. Choose to be reliant and determined with the life that “YOU” now have.
Self-harm is NOT an option. “YOU” have to live with this illness, forever, and for “YOU” and I. that may be a very long time. Take the strongest medicine. Change if “YOU” have to BUT take a DMT. This is your life, “YOU” are taking control and deciding how “YOU” want it to be. “YOU” may still have exacerbations (attacks, episodes) but by taking a DMT “YOU” are slowing the rate in which “YOU” have them. After 20+ years I could not point to an attack. YES, damage has been done, I have the Magnetic Resonance Images (MRI) to prove it, I have lost skills. BUT I still take my medicine twice a day, mostly without food. When I first started the only medicine available was an every other day injection. As everybody knows I really dislike needles, BUT I still took them, come rain or shine. The only time I missed them was when I was travelling back and forth to Australia. Yes, a woman messed up my rhythm, but she is very worth it. Eventually, a tablet became available and now at 6 am and 6 pm i take a tablet. No exceptions. “YOU” have ms, “YOU should be like this. Find away to get your medicine and take it. There are places that will help “YOU” financially figure ”YOUR” need it, so there are no excuses. Only your own fears, and “YOU” must hide them in a bright corner and learn to ignore them. They will always be there, the what-ifs, the if only I had. These are fears that we all have had, fears that we still may have. Know that they are there, do not be a cave to them. “YOU” are strong enough to live in spite of them.
Royce (your ms writer and brother)
do what is best for the longterm you, always the longterm you
