wheelchair Archive

14

Road Trip

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“A vacation is what you take when you can no longer take what you’ve been taking.” ~ Earl Wilson

I’m going on vacation for two weeks. I do this once a year. Most times, I go somewhere close to home. But every once in a while, I fly to a place several hours away. My upcoming vacation will be different from both of those scenarios because this time I am taking a 6-hour road trip.

The difficulty with doing this is, my MS has always given me problems when I ride in cars. So I guess you are wondering, if that’s the case, why do it. Well, my biggest obstacles have been bladder issues due to frequent urination. Three months ago, I had a suprapubic catheter surgically implanted and I’m calling this car ride my first big test to see if it was worth getting.

During past road trips, we would stop every hour and a half so I could go to the restroom. We not only had to locate a restroom on the highway but, because of my wheelchair, it had to be an accessible restroom. Also, frequently getting in and out of the car would usually wipe me out before we even arrived at our destination. I’m hoping the catheter eliminates both problems.

So, I’m off for a couple of weeks and with any luck I will pass the test. I look forward to a fun, peaceful and MS free trip. I hope you find some time this year to relax too. We deserve it.

23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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27

Mourn The Loss

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While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

43

Stem Cell Hope

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For the first time in my history of multiple sclerosis I‘ve been shown a monumental glimmer of hope. Stem cell treatment may possibly be the closest thing to a cure we’ve ever seen. It implies the ability to not only stop MS in its tracks, but also repair damaged nerves.

This speaks loudly to secondary progressive patients like myself. It also applies to author/journalist, Richard Cohen. Cohen has dealt with MS for nearly 40 years. Multiple Sclerosis has left him nearly blind and dependent on a cane to walk and stand.

Thanks to Cohen and his wife Meredith Vieira, we’ve been invited along to share their stem cell journey. The plan is to “use viable undifferentiated stem cells collected via his breast bone marrow. A storehouse for viable stem cells.” Stem cells according to Mr. Cohen are basically blank which allow them to become whatever type of cell the body needs to heal itself.

Stem cells were taken from his sternum. Then in five months will be injected back into his spinal cord where they will hopefully fortify his spine thereby removing his dependence on a cane. In my case, relinquishing my need for a wheelchair, among many other problems.

Did I explain that well? If not, I’ve included his video below for you to review.

The reason I’m so optimistic is because there are seldom treatments that include those of us with secondary progressive multiple sclerosis.

In secondary progressive you never return to your baseline health status. For example, with me a doctor I barely knew declared I was secondary progressive the moment he saw my wheelchair.

Until recently, this procedure had never been done in the United States. I know this is not a cure, but it’s certainly a step in the right direction. The implications of what could possibly happen are endless.

I have to caution myself to remain calm. Mr. Cohen says he’s cautiously optimistic. That’s a good idea. He’s keeping us updated through his blog JOURNEY MAN (http://richardmcohen.com). He’s scheduled to get the first round of cells in the middle February.

To be honest, I’m excited!!!!

But most importantly it gives one room to…hope.

Stay tuned…

84

Clinging To Sanity

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I’m not clear what happened differently this week. I don’t have any new symptoms. Everything I can’t do, I haven’t been able to do in years at this point. My husband is still doing a good job taking care of me. We have not even been arguing. I’ve been seeing my same psychiatrist and I’ve really been doing my part to cling to my sanity.

But yesterday, I completely lost it. I cried endlessly all day long! I hate crying. I especially hate doing it in front of my husband. Because, I know there’s really nothing he can do and men always want to “fix” the problem. The thing is I don’t think there is a way to fix me.

Since nothing has changed, I am fiddling with the idea of increasing my depression medication. You know depression is really a side effect of multiple sclerosis. But of course it would be.

It’s so bad that I actually left a recent MS self-help meeting feeling worse, because I was the most disable one there. Meaning, although they all had valid complaints, at least they could get up and walk out. I had the nerve to judge them and that made me feel horrible.

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It seems as if once again I’m assuming that if you can walk you must be happy. From down here in my wheelchair it seems that has to be true. Right?

So I’m going to see my psychiatrist next week. Hopefully, it will be as simple as him writing a new prescription.

Hopefully.

36

Small Victories

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Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

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38

Aisle Chair

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I was excited from the very moment I was asked to speak on a panel of WEGO Health activists. The other panelists represented cancer, diabetes, and organ transplant patients; I of course represented multiple sclerosis. The conference was to be held in Boston. That’s a seven-hour flight and one layover from my home in New Orleans, Louisiana. This in itself did not pose a problem for me. I’ve traveled by airplane multiple times in the past. I see disabled individuals in the airport all the time.

But this time was different.

Tommy, my husband, wheeled me to the gate. Then both the airline representative and Tommy escorted me down the jet way to the airplane. In the past, I would then stand and wobble to my seat. This time it was deemed necessary for me to use what they call an aisle chair. I could no longer even wobble to my seat!

The aisle chair fits between the rows of the airplane. Can you imagine being wheeled between the two rows of seats? I was worried if I could even fit. They strapped me up like Hannibal Lecter. I had to ride with my arms crossed to ensure I passed. The plane wasn’t even empty as I missed pre-boarding thanks to bladder issues! I was forced to ignore all embarrassment issues. Once I made it to my seat. I was sad of course. I let a silent tear fall. Then pushed my seat back, closed my eyes, and relaxed. After all, what else could I do?

It was very humbling to say the least. It confirmed my disease had progressed. But it cemented that I could handle it.

I continued to move forward anyway and instead of saying my planned speech at the event I told this aisle chair story, which gave the conference attendees a glimpse at how it is to live with MS.

Have you ever seen an aisle chair?

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More WEGO Health 2013 Socialpalooza pics.