Wheelchair Archive

9

The Power Of The Chair

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“Never worry about numbers. Help one person at a time, and always start with the person nearest you.” ~Mother Teresa

I own two power chairs. One is portable and the other is heavy-duty. Due to limited space in my home, the heavy-duty chair has been stored at my parent’s house. I never use it and it just sits in their dining room taking up space. My parents didn’t mind it staying there, but it bothered me. So last week I decided it has been at my parent’s house long enough and it was time to sell it.

So, what did I do? I took some pictures of it and tried to sale it on Facebook. I thought it was a good idea, but apparently…no one else did. Not one call.

Plan B was to give it away. I wish I had done that from the start.

I connected with my local MS Society and they gave me some leads of people who were in need. After a few days, I was able to connect with a fellow MSer who needed a power chair.

I recruited my dad to handle the specifics and the actual transfer of the chair. He’s good with that kind of stuff.

The man resides roughly two hours from my parent’s home, but was happy to make the trip. He was so appreciative.

Who knew how rewarding helping someone would be.

16

Living Cliché

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“We have to dare to be ourselves, however frightening or strange that
self may prove to be.”
– Mary Sarton

I wish I had a boring life.
I would be a mom with two kids and a stay at home wife.

I’d watch TV half the day.
Then shop the other time away.

I’d have lunch with friends.
Then, the next day, meet them again.

Go dancing on weekends and stay up late.
Every night, dinner with my husband is a usual date.

No medicine to ingest. No shots to inject.
I can go all day, no need for rest.

No doctors to see. No nurses around.
I’m always happy, you never see me frown.

I wouldn’t have to explain why I’m in a wheelchair, because there would be none there.

I would go to the movies and watch it from beginning to end.
I would run at the park with all my old and new friends.

I would sleep all day by choice.
And when I spoke, everyone would respect my voice.

No more smiling out of fear.
I’m the best at everything, the envy of all my peers.

My husband would be my husband, not my caretaker or nurse.
I would love that the most, because that part hurts the worst.

Am I wrong for wanting to be like everyone else?
I’m sad that I feel this way, but I really wish my life were a cliché.

35

Accessible Salon

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“Permanence, perseverance and persistence in spite of all obstacles, discouragement, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak.” – Thomas Carlyle

I mentioned before, my hair salon asked me to stop coming to their shop. To be fair, the owner actually said, “We can only work on you if you bring someone to assist you.” They said they were afraid I would hurt myself.

Well, since it usually took between 3 to 4 hours to complete, finding someone to stay that long in a hair salon was very tough. My husband volunteered but I knew he would be miserable. It was all women, everyone spoke Spanish and the TV stayed on Latin American television channels. That’s probably not his idea of a good time.

Since being asked, “not to come back”, it has taken a while for me to find a new beauty parlor but now the search is over. I finally found another hair salon. It is in a local shopping mall. It’s a pretty high-end mall. There is a fee to park and they also offer valet parking. We don’t valet park but we found out that the mall will validate parking if you show a receipt from a purchase.

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The salon is nice and it cost more than the old place. To remedy that problem, I go every two weeks instead of once a week. By doing that, the amount I spend comes to about the same as before.

The best part about the new salon is they work on me from my scooter. I never have to get up. Also, it is appointment only service instead of first come first serve. This cuts down my time in the salon to about an hour.

So far, I am in love with my new accessible salon.

Check out the finished product below.

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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.

34

A Night Out

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The other night my husband and I went on a good old fashion date. We left my MS with a sitter and headed to a concert at a local nightclub. Of course, I was in my ever-present handy wheelchair decked out with mountain bike wheels. I was also in a good mood and ready to take on the winter air.

We arrive at the club. We are early and due to my wheels, they put us first in line. When the doors opened the guards ushered us straight in. Subsequently, we had first row standing room only positions. I was thrilled. I was proud of myself for even going. I left the confines of my laptop and condo. My biggest worry was keeping my bladder in check.

The night began with a local female disc jockey. For some reason I felt a shared feminine connection. She was dong what she loved to do, despite the odds that stack against her. I like to think, I am too.

An hour later, the funk star, George Clinton & Parliament Funkadelic, arrived and nonchalantly passed directly in front of us! For those of you who are unfamiliar with his iconic status, the closest person I can compare him to is the late great Rick James.

Within minutes the house was packed. Still, George Clinton himself managed to greet me in person. It was the highlight of the night. Really, I think his security detail was concerned about a possible stampede.

George Clinton, “The Atomic Dog”, stopped to talk to me.

I’m not claustrophobic, but even the most stoic of us would have been a bit taken aback. Not even the oh so strong smell of marijuana could keep me calm. Since I was sitting, I felt that people were engulfing me. I think my husband saw my level of anxiety rising. He gently grabbed my hand; something he seldom does, in this case it only confirmed we were in a sticky situation.

A little over half way through the show we decided to leave. We received special permission to exit through the artist only door. There was no way we could make it back through the crowd to the normal exit.

After all, an hour and a half was good for me. I was drained. I met George. I was ready to go; besides, I had to go to the restroom!

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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…