Got to see alot of bald eagles though!

The cruise experience was awesome! Didn’t get to see any whales breaching or anything but the entire trip was memorable!

About 5 years ago! We flew into Seattle then Juneau! Then a brief trip from Juneau….cant remember where to, but it was lovely! Here are a couple photos!

Would love to go to Alaska! Did you recently go there? How was the cruise experience?

That’s great! How long have you been doing it? Has it helped you?

Yes, I lift weights three days a week.

Cruise through and around Alaska was really awesome as it wasn’t as well hot! Food for thought-avoid the heat!

What are some of your favorite places to go during the summer? Do you have a place that just makes you happy?

This could be the beach, local state fair, boat docks, fishing, anything!

I love anything by the water or being in coastal towns. Definitely captures the summer feel!
🌊🐬

How do you take care of your mental health while living with MS? 🧡

I find these tips super helpful in my personal self-care journey: https://bit.ly/4gUAHxt

I’m sure many of us have heard the benefits of resistance training, but came across this article talking about it protecting nerve cells.

article: Pilates, resistance training exercises may protect nerves in MS

(This is the article I was referring to, @Ary )

Does anyone participate in resistance training?

I hear you! Sometimes you know who you can tell the real answer to. Peace is important.

It’s hard depending on others or learning to! Hopefully you get good news in your next appointment🙌🏻

My husband has MS, but as a caregiver, this story is mine, too. – This is good!

LINK: My husband has MS, but as a caregiver, this story is mine, too

I think people can forget that those caring for others with MS deal with it too, of course, in a different way. 💙

Yeah, used to be able to drive a car…right side numbness took that away! Now I have to sit back and watch my wife and her mother do things, that we used to do!

Don’t want my wife to stop living because of me…

Going way back (3 decades) used to be able to dunk a basketball! Whew, just hoping for a new and improved DMT! Been on Ocrevus for 5…

Read more

The relationship with your neurologist can be tricky. Sometimes you feel it’s a great match and then other times you’re looking at a list of new ones to call.

When do you decide to stay with your doctor? Have you changed doctors since your diagnosis?

It’s extremely frustrating! When doing certain tasks I would catch myself saying, “ugh, I used to be able to do this”, especially when asking for help. Then I had to let that go because like you said we have no control. I had to switch my mindset when approaching certain changes. Definitely easier said than done!

I’m not sure I do, I tend to think of what I used to do when I attempt to do that now. Everything takes longer and I still grieve how much quicker I could do that same thing before.

I know I am not the same as I was prior to my MS diagnosis and I have my fair share of difficult days but I cannot let this control me. I know for whatever reason…

Read more

Sometimes it’s easier to say”I’m fine” or “everything is good”. Definitely understand the grieving part. Adapting to the change is not easy, making reminiscing on the past a habit. How do you deal with that?

I agree, I always say I’m fine when asked how everything is. So far from the truth but what I say. People have no idea what I have been diagnosed with (my choice, it doesn’t benefit them to know) so it’s always – all’s good.

I’m 4 years into this journey and I’ll be honest, I hate not being the me l used to be and grieve that. I’m navigating…

Read more

Keep us posted!

I think this is similar to the one I was currently looking at! We shall see in about 3 weeks what the status may be, for a Nov like infusion!

Responding ‘I’m fine’ has never really been about how I feel over the 44 years since my diagnosis . It was to avoid conversing with people that either didn’t really care or just wanted to tell me what I should do to feel better. It’s tiring listening to all the ill-informed experts out there. My world is smaller now and zen.

Here is the latest news on CAR-T therapy: FDA clears CTA313 trial for progressive MS, autoimmune diseases

I’m not sure if you came across this, but take a look!

Any thoughts or discussions on newer CAR-T therapy? I keep googling it and end up around what seems to be a dead zone. Would like to see more about it, even if it is phase 1b trial…outcomes look promising from what I can see!

I understand the newer CAR-T drug, have been assessed, but my neuros switched in the process. I meet with the new guy in about 3 weeks, and can only hope and pray that I am still a candidate.

I think my EDSS came in around 4, still mobile, but can’t drive or work!

Areli’s, thanks again for mentioning!

Support can come from many places, but unfortunately, not everyone has it.
This could be family, friends, neighbors, groups, care team, and more!

Do you have support, or do you feel like you need it in your journey with MS?

I always add two or three points (1-10 scale) onto what I think I’m feeling at the time.

As the chronic pain becomes “normal” after a while and your body gets used to it, so it masks it for you to cope on a day-to-day basis.

And be as vocal about your symptoms as much as possible with any medical or allied health staff… If anything, they…

Read more

I’m interested in reading the results of this study, which focuses on cognitive symptoms and uses a coaching app. 🤔

Read about it! Would you participate?

Trial to target MS cognitive symptoms with mindset coaching