I have Secondary Progressive MS which means, according to the NMSS, a
transition occurs from the more inflammatory disease process seen in Remitting Relapsing
MS to a more steadily progressive phase of the disease characterized by greater
nerve damage or loss. During this phase, relapses become less frequent - or stop
happening altogether — and people experience gradual changes in function, with
or without some periods of stability along the way.
When I was diagnosed
with MS in 2011, I believe I was already on the way to having SPMS. If I had
received a correct diagnosis in the early 2000’s, I think those would have been
considered my RRMS years. Who is to say
that a DMT (disease modifying treatment) or DMD (disease modifying drug) taken years
earlier would have staved off my disability or not? I often wonder. “What if?”
After I broke my ankle in 2010 – which put me on the road to my 2011 diagnosis
- my mobility continued to decline. I went from a cane to forearm crutches to a
scooter to a power wheelchair within a matter of less than five years.
There is no treatment
for SPMS, I take medications to control my symptoms and a variety of vitamins
and supplements. Since there are so many drugs for RRMS however, the medical
field has become more interested in developing treatments for progressive MS. Some
have been met with success.
With SPMS, I feel things are not as easy as they
used to be. I have become resigned
to the fact that my current state of disability will probably not be reversed, I
probably won’t walk again. I am slower. I am weaker. I need more help. I am more easily
fatigued and need more time to complete the tasks that I would have found easy
in the past.
Now that I am reading this, I realize it sounds like a bit of a downer. SPMS
isn’t puppies and rainbows but I am finding ways to cope with these changes,
including support resources and finding ways to make work and day-to-day
activities easier on me.
I am also encouraged by research that is leading to possible treatments
for progressive MS on the horizon, including remyelinating agents like Anti-lingo and a dozen other
promising
therapies. I wonder what the future holds for MS.
SPMS isn't puppies & rainbows, it's your reality. In order to give meaningful support you have to be blunt & honest with the people that care about & for you. Thank you for sharing & educating. I'm learning a lot and I'm inspired by your strength.
ReplyDeleteI like your blog because you *are* honest. There aren't a lot of blogs about people who are living with MS or other mobility limiting diseases.
ReplyDeleteI want to know how better to cope with what I'm going through. It really helps to know I'm not alone. That there are people with more advanced MS that are living vibrant, happy lives.
The link to the Luggie was incredibly helpful. Thankfully right now I don't need a scooter, but I've had relapses where the Luggie would have been exactly what I needed. --A few years ago, my husband took me to the state fair in a wheelchair--there was no way I could have walked that far. The Luggie would have been perfect. I really didn't think I'd ever walk again. Right now I can walk short distances--using a shopping cart as support really helps, and other times I use the scooters provided in the stores.
Keep on sharing. I think that it's not fair to expect those of us with these diseases to always be positive. You're not being a 'Debbie Downer'. You're sharing your life. Nobody's life is all roses and glittery unicorns. One of the most common complaints about social media like Facebook, etc. is that seeing how great other people's lives are is depressing. Only sharing the highlights isn't honest or helpful for other people with MS.
Thank you so much for your wonderful blog and sharing your life with us. You're giving me hope.