Walker Archive

31

MS Milestones

broken computer

Today is different. I’ve been having increasing difficulty typing. I previously promised myself that if this ever happened I would use assistive devices available to me. That is, no matter how humbling it may be. Because like it or not I’m not the same woman I used to be!

Now, today is different because I’m using dictation software in order to complete this post.

I guess you can say it’s a milestone of sorts. In fact over the course of the last few years every time I had to start using a new device I considered it a very big deal. Whether it’s my cane, walker, wheelchair, scooter or power chair, I had to accept my new reality. Or as we say every year it seems to be something, and here once again is one of my new normals. To be honest though, I saw this one coming. More often when I’m tired, I’m require help to do normal, easy, simple tasks; for example buttoning my shirts or putting on my own deodorant or sometimes even feeding myself! Thank God for my husband and my mom.

Fortunately, with this computer program I simply speak into the microphone on the computer and it in turn types what I say. I really, really didn’t want to use it or anything else. It was hard to accept any kind of help at first. But, I figured in order to keep with what I preach… I had to. Writing has become my outlet from MS. I’ll be damned if I let multiple sclerosis shrewdly yank that away from me too.

MS Sucks

At first for me, like many others, multiple sclerosis meant only blurry vision. But look at me now. I imagine I’m going to accept my new typing limitation and move on to embrace this dictation software on my computer. I may even be drawn to purchase brand name fancy software. Who knows?

I’m even having problems using my computer mouse. My hands just will not listen to me. I did however read about a device that moves your mouse with your eye movement.

Maybe in a few months I’ll be ready to tackle that one.

32

Twists and Turns

A long road

My dad, who had a stroke a couple of months ago, shared a card with me that at the time we both could relate to. It said, “Do not worry that you’re not strong enough to make it before you begin. It’s in the journey that God makes you strong”.

The card also reminded me of a fellow MSer I met in passing. The encounter was a long time ago when I was still walking on my own. She was admiring how much physical ability I possessed. Then she lowered her head and confided in me, “Nicole, I can’t even lift myself off the toilet.” I subsequently squeezed her hand, offered a genuine show of support then we exchanged contact info and departed.

Now, years later, as I sit in my scooter I’m probably closer to her than she will ever know. I no longer have her info so I can’t reach out. Besides, what am I going to say? “Hey I can’t lift myself off the toilet anymore either!”

I am always in the toilet

I would’ve never thought I’d be here today. It’s been a long journey, but Tom (my husband) and I have made it through. He hears me racing to the restroom and just meets me there. He saves me from actually having to ask for help. It’s a very humbling experience. Actually, it’s mostly in the mornings that I’m the weakest.

How does one prepare themselves for this?

This journey has made me into a different woman. I’m weaker yet stronger in more ways than one. Somehow my dad, Tom, and I are making it through despite all the wired twists and turns…but certainly not on our own.

32

No Escape

It is hard to get away from MS.
I would love to say one day, “I used to have MS.”

But since that’s not going to happen… at least not this weekend, I think I will stick with reality.

In my quest to escape multiple sclerosis, I’ve been weighing the possibility of getting a Baclofen pump implanted in my abdomen to combat my tight leg muscles. According to the Baclofen pump website,“This technology is to loosen overly tight muscles. The key is a surgically placed pump that continuously delivers medication to your spinal cord fluid.”

Sometimes my legs are like logs and then others times they are “normal”. When they are log like it can be pretty grueling to accomplish everyday tasks. Making it to the restroom on time is more difficult and getting in and out the bathtub is nearly impossible.

In my dream world, I’ll get this pump that delivers a muscle relaxant and then with a little strength training, I’ll be able to walk with a walker again. I just don’t know if that’s how it actually works in the real world. In all likelihood I’m probably not stiff enough for this therapy. Also, I’m not sure if Medicare covers it.

The truth is, my muscles are too weak for walking so tight legs may not even be the main problem. I am currently taking the Baclofen pills so I may just stick to the oral medicine.

Either way, the one thing I’m sure of is that there’s no escaping MS.

But that won’t stop me from trying.

River walk event

47

Horse-N-Around

If u want to ride...

The reason for my outbursts of relatively gloomy posts is because I just can’t seem to get a handle on what’s happening to this MS body. I just want some sort of reprieve. Now, I say this fully aware that things could always be worse. I am learning from your comments and my readings that the essence of who I am is still here. It’s perhaps why I continue to blog through this onslaught of “new normals”.

I just don’t know of any of my MS friends who are continuing to encounter decline. Or do I? Please let me know because I’m feeling alone on this one.

One good thing is that I recently started horseback riding. I began the process of registering a while back. There was quite a bit of paper work involved. I refer to it as legal mumbo jumbo. But once I got past that I was on my way to the horse farm.

Basically, the type of hippo-therapy I am doing mimics the action of actual walking. It works my core tremendously and also the muscles used for walking. I’ve been riding for three weeks. I go once a week for 45 minutes. I had to work up to 45 minutes of course, at first lasting for only 20 minutes. Since starting I find getting up out of the bed easier, so I think I may be experiencing the benefits already.

Horse in around

Though, I may be on this slippery slope, it’s so important who I surround myself with. I try to associate with supportive folks that love and help me in all my endeavors. I mean riding horses with spastic legs, minimal core strength and slight cognitive impairment is pretty risky business.

But listen, if you tell me this may move me closer to walking with even a walker then…SADDLE ME UP!

By the way they call it therapeutic horseback riding and it may be covered by your insurance if you get a prescription from your doctor. So far I recommend it. I guess Ann Romney was on to something.

I takes some doing for me to get o

39

Make It Work

My family takes a week long cruise every two years during Thanksgiving. I myself have gone three times in the past but never with my husband and certainly never in my present state. So it was the first time for both of us in many ways. He has never been on a cruise of any kind. I have never been since my diagnosis has tainted me physically. So, it was bitter sweet.

For my husband I could understand the 10 years it took him to finally agree to join us. First off, it is basically all my friends and family. That means most importantly his in-laws including his father-in-law (my father). Secondly, to make matters worse, my poor hubby was sea sick the majority of the cruise. Remember, it was a SEVEN-day voyage. I should have known it was going to be rough for him because he can barely stomach flying!

As for me, it was challenging viewing a world I use to be an active part of. Many of the activities offered on board that interested me really didn’t accommodate me. Also they only offered two wheelchair accessible excursions at the three ports of call we stopped at.

Still it was nice to be catered to. It was welcoming to be surrounded by family. It was great that for once hubby wasn’t totally responsible for the cooking and cleaning. Also we still participated in many activities despite the accommodation hurdles.

It was scary yet invigorating to step out of my comfort zone and to revisit an old pastime yet in a different way. Because of my fatigue it was exhausting trying to keep up with everyone else…but I did. We did!

I’m so proud we made it work and had a good time.

34

Immune Compromised

Finally, I got a new non-multiple sclerosis endeavor to talk about! Well sort of…you’ll see.

My husband and I are trying to buy a new home! Yes and I naively thought banks and/or credit unions would have a separate grant program for people with disabilities. Especially, since our income is drastically less than it was pre-diagnosis. But no, they don’t. I guess the best answer is to earn as much as you can before joining the disability club. Also, make sure you get long-term healthcare insurance through your employer while you’re eligible.

I thought that in accordance with the Americans with Disabilities Act, financial institutions would make certain accommodations. Meaning lower interest rates for people living with disabilities, but I quickly figured out they don’t. Besides the financial issues, I’ve also found myself weighing options I haven’t considered in a long time. Surprisingly, it was quite welcoming. I’m pondering things like, what’s more important, having a bigger living area or larger bedroom? Let me tell ya, I’d much rather make those decisions than what disease modifying drug to pick. I must admit, having MS has taught me not to sweat the mundane issues. Past hardships don’t seem so problematic anymore because I’m becoming immune to worrying.

But I’m still not completely enlightened yet. As it turns out, the home I really want is out of our financial reach. When will I just be satisfied with what I have or in this case, can afford? But that’s the human condition. That’s the reason for the whole stock market crash, right? I always want more. Be it walking or scooting around. I never quit. I remember a time when all I wanted was a scooter. Now, I have it, but I keep busting my butt trying to use my walker. It’s so ironic that I’m drooling over square footage that I can’t even walk?

The next day, as we were leaving to meet with our realtor the phone rang. It was my doctor. Apparently Gilenya, the pill I take for MS, is doing a serious hacking on my white blood count and my doctor wants me to go to the emergency room if I get a fever, feel lightheaded or dizzy. A low white blood cell count means your immune system is suppressed. This leaves me open to getting sick really easy. The plan is to let my counts rise again and start on the other new MS pill. He said it has just been released and is safer than Gilenya, but it’s not as affective. Ultimately, it might also lower my white blood cell count! Great! (I’m being sarcastic)

Nevertheless, I pulled it together met with my realtor and put in a bid on a new condo.

See we just got to keep moving forward with or without an immune system.

30

Sex, Intimacy, and MS

Sex has been on my mind for a while now. So I figured I’ve blogged about urine and bowel issues, why not follow up with sex????? Natural transition, right? No not at all. Don’t worry; I’m not actually going to talk about the act of sex. I’m going to focus on how MS has affected my capacity for sexual feelings or my sexiness to be clear.

At first, I was just so spastic. My legs wouldn’t cooperate. Now that I have muscle relaxants, I’m a tad bit more limber but I don’t feel desirable. After all, my husband helps me with things one normally wouldn’t want any man to be present for, much less help out. I know I’m blessed to have him around but honestly how much of this can we take? I always harp on the activities Multiple Sclerosis has stolen from me but I forgot to mention my sex life. That part of me is somewhere between my walker, wheelchair, scooter and shower bench!

I just don’t have the energy to get “cute”. You know to go the extra mile from presentable to attractive. I think people don’t really look at me that way in a wheelchair. It stinks not being at eye level. I try to shake things up and actually dress like a 37-year woman. We also try to live that way too. Well, as much as we can. I know there are things my husband loves to do together that I just can’t do anymore.

Most mornings all I can do is simply get dressed. Makeup has been a casualty of this war and high heels are impossible for me to wear. I do pride myself on weekly visits to the beauty salon. I get my hair styled and a pedicure with hubby waiting patiently by my side. It’s funny, because I want to at least try to be seductive. But sometimes even with the hair and nails complete, I don’t feel like the diva I think I used to be. I do my best not to take him for granted. I wear dresses and cute sandals as often as I can but my shape is not where it was before this despicable disease. I remember him telling me my legs were his favorite body part of mine. I wonder what it is now? It’s surely not these wobbly stumps I have today.

But despite all of my MS faults, my husband still tells me how nice I look. Now, I just need to convince myself.

That’s the hard part.