Bladder Issues Archive

50

Pride Wins Again

restroom

After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

Salon Hair

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)

Gleason

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14

Exercise and MS

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Content provided by: Tammy Mahan of Healthline

MS affects the communication between the spinal cord and brain in those with the disorder. Electronic signals are sent down long fibers known as axons found in a protective, insulating substance known as myelin. Myelin is thought to be a threat and attacked by the immune system causing it to become damaged when MS is present. There is an inability of the axons to conduct signals properly when the myelin is lost.

The signs and symptoms of multiple sclerosis are similar to other problems making a diagnosis difficult to obtain. The diagnostic process has been standardized by the diagnostic criteria that medical organizations have created. It is particularly effective in the first stages of the disease. When someone has had different episodes of neurological symptoms associated with MS such as numbness or tingling, utilizing clinical data alone might not be enough to diagnose the condition. Analyzing the cerebrospinal fluid and neuroimaging are the most common tools for diagnosis. There is a less attentive response to the optic and sensory nerve stimulation in those with MS because of the demyelination of the pathways.

There are obvious benefits to exercising for healthy individuals; there are also benefits of exercise to those with MS. Benefits include:

●Exercises helps you to manage your weight
●People with more severe MS are aided in maintaining mobility
●Muscles weakness is reduced and mobility maintained thought the toning and strengthening of muscles.
●Some of the symptoms associated with MS can be helped.

MS cannot be cured with a single exercise but it can be used for prevention and to supplement current therapies. The exercise that is chosen depends on the individual. You have to take into account the things that you enjoy and whether you prefer to be alone or with someone when you exercise. Are you going to need help and instruction for an exercise program? These questions will aid you in picking the program of exercise that is right for you and your MS.

●Bowel and bladder problems are aided with pelvic floor exercises
●Depression symptoms improve with aerobics
●Muscle spasms and stiffness are helped by stretching, Thai Chi and Yoga
●Balance is improved through aerobics and walking

Your energy will be renewed as you start to have the natural inner balance restored. MS symptoms such as aches and pains will begin to disappear along with other symptoms associated with the disease. There are several exercises that you can do to assist you with the problems of lack of endurance, ataxia, and weakness in the muscles and loss of coordination and balance so that the problems are effectively aided when you have MS.

It is important that exercises be tailored to the symptoms and begins immediately following the onset in order to get the most benefit from the exercises. Waiting increases the difficulty of overcoming the problem making it vital to start immediately when balance or weakness are the problem. Difficulties can increase when exercises are put off for too long, and the wrong exercises can make the problems worse.

Content provided by: Tammy Mahan of Healthline

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.

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.

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