11 posts in the category “Guest post”

Breaking the silence on incontinence

Posted November 21st, 2017 by

A guest blog by member Shannon

 

MS gives me a lot to write about, which is a wonderful coping mechanism when certain aspects of the disease are difficult to talk about. Initially, I wrote about stress and the heavy toll it’s played in my life, and on my body, in the last month. But, as often happens with this disease, I was interrupted. My body said unexpectedly, “No, this is the way we’re gonna do things.”

And just as suddenly, my writing inspiration is changed, because although my temporary season of severe stress was very real and terrible, there is a part of this disease I must expose for the sake of anyone who may suffer in the way I do. Possibly, I’ve waited years too many to share. I’ve written multiple accounts to describe my suffering which have never been read; kept private to spare myself additional pain and embarrassment. I tucked them away, in the same way I attempt to shamefully tuck away this symptom and pretend it isn’t there. Until the next time.

I received an email recently from PatientsLikeMe which prompted me to share the details of likely, the most humiliating part of MS. Incontinence. The word itself is uncomfortable. Many can’t even say it right, and most people aren’t totally sure what it means. Having worked in retirement homes, it’s a familiar word to me, yet even I was unsure of its depth, assuming it meant, “a little bit of urine leakage, typically in the elderly when the bladder simply gets old and tired.” And then there’s my own personal definition.

A few months back when my kids got out of school for the summer, I decided to take advantage of the peaceful morning (not filled with making lunches and carpooling for the first time in nine months) and take my beautiful big-white-fluffy-dog, who we like to call our own personal pet bear, to a local preserve to practice using a mobility harness we bought her. If you know anything about me, you’d know this was overly optimistic and risky from the start as my walking range is quite small and as a rule, I don’t walk our dog ever. I reasoned that I would walk a very short distance to save my strength for the walk back. I hoped that the a harness and mobility handle would assist me enough to make this a successful morning stroll.

On my drive to the preserve, I realized that if I didn’t find a bathroom and attempt to empty my bladder, I might have a predicament at the preserve, since I didn’t know if there were any restrooms there. My preparation seemed flawless, this was going to be a great morning. But, when I arrived at the preserve there were no restrooms in sight.

Although a very flat and easy trail, my legs didn’t take me very far. As soon as I noticed my gait changing, I turned back. A rather predictably-unpredictable symptom of my MS related bladder problems is bladder urgency. The word is self-describing. Urinating suddenly becomes urgent. I may not have a full bladder, yet without warning, it must be emptied. Sometimes this results in a little bit of leakage. Thankfully, I’ve always been able to locate a restroom before my bladder decides to empty prematurely. Until this day.

How did I not know?

Nobody told me that somehow the weakness in my legs, which grew with each step, would also somehow impact my ability to hold my bladder. Duh, “lower extremity weakness” might include those parts below the belt too, not just my legs. Here I was, growing fatigued to the point of limping, trying to speed walk and creating constant tripping hazards – my own feet. For the first time, I felt complete bladder incontinence. The external sphincter outside my bladder, which I had depended on for nearly 40 years, and assumed I had ultimate control over, decided that today was the day it was the boss of me. Alone, no restroom in sight, and, before I could even consider my plight, urine fell out of me like it wasn’t even mine. Like it was being poured from another source. Zero control. I couldn’t stop it, I couldn’t hide it, and I couldn’t even continue walking forward. I instinctively used all the tricks I’ve used in the past to control the situation, but I failed. The more I tried to hold it, the more I realized I must surrender to what is happening. My dog, unaffected by what was happening, stood beautifully still. Unbeknownst to her, she became my shield. From what? I don’t know. Myself maybe. This truth maybe.

When I felt the sensation pass, I pressed forward to get to my car as soon as I could. Tears rolled down my cheeks as I processed what was happening: “I just peed all over myself from the waste down – pants, socks, shoes, and now I can’t even walk quickly to get back to my car, I’m hobbling at a snail’s pace. God, don’t let anyone see me. God, help me get to my car.”

It was a miracle no one was on the trail that day. It was a miracle I wore black leggings instead of shorts. It was a miracle my dog sensed that I needed this makeshift harness more than ever. It’s a miracle that I drag myself out of the basement of my humiliation every day and continue to keep on going, keep on trying.

Clearly, I survived, and this day is behind me, but the issue of incontinence isn’t. I live every day this way, on the border of “Can I make it? Should I leave the house now or wait ten minutes?” And always, my MS superpowers are paying attention to where each and every bathroom is. Leakage, well they make something for that. Complete emptying in public, I’ve never had to consider what those options might be. And for the curious, yes, I’ve had some very close calls with bowel movements as well.

There are many solutions offered to those of us who live this way. I’ve found some work better than others. I thought since the experts form helpful lists, I myself as a self-titled expert, would do the same.

These are some tricks that work for me:

  1. Unfortunately, restricting fluid intake is necessary at times since obviously any fluid intake causes additional urination. Which is the exact opposite of what we want to do if we are fighting constipation, but sometimes we have to do what we have to do.
  2. A nurse once told me, “Sip, sip, sip equals pee, pee, pee. “ So I almost never sip water, rather, to hydrate, I chug a whole glass at once, and then typically, empty my bladder all at once.
  3. Wear black and dark colors, it hides leakage well.
  4. Know where public restrooms are everywhere you are spending your time. I cannot emphasize this enough. And know which bathrooms are the most public friendly with the least amount of walking.
  5. If going somewhere early, reduce caffeine intake as it is a diuretic. For me, this means if I have to leave the house first thing in the morning, I limit myself to half a cup of coffee.
  6. Various movements help buy me minutes or seconds to get to the restroom or while waiting for it to become available. Pushing on my bladder slightly and doing a subtle potty dance of bending, lifting one leg up on a bench etc. helps distract my brain from the urgency.
  7. Since I also suffer from bladder hesitation, going before I leave the house isn’t always an option. Sometimes I just can’t go. I always consider how long it will be until I can get to the next bathroom. And when my bladder is playing it’s hesitancy game, it is very shy, needs complete privacy, and gets even more agitated and hesitant with heat, so I make sure to keep those things in mind too and plan accordingly.
  8. Limit drinking any fluids in the car. Just don’t do it. Hydrate plenty before or wait until after.
  9. Don’t assume because you’ve had multiple children this is the cause of leakage. Although I have three children, my leakage is very different than simply a tired, stretched out, child bearing bladder. I never leak when I cough, sneeze, laugh or squat. Neither can I push on my bladder to initiate flow or complete emptying (incomplete emptying is another bladder symptom I’ve dealt with in the past).
  10. Tell a few, understanding people close to you, so that when you say, “I gotta pee”, they stop what they’re doing and practically form a military procession to remove any obstacles and get you to the nearest toilet, or at least, they just get out of the way.

This symptom can be very isolating. I don’t know another human being who can share in this experience with me. And that’s my hope in sharing with all of you. Even if it feels that way, we aren’t alone, and we need to offer our experiences and our tips to a community struggling to feel less alone in our disease.

Can you relate? PatientsLikeMe members are sharing how they cope with incontinence in the MS forum. Check out what they’re saying and chime in with your own tips.

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Practicing Reiki and Qigong with Parkinson’s disease: Karl Robb shares the benefits of these complementary therapies

Posted October 31st, 2017 by

What kinds of complementary treatments can help people with Parkinson’s disease (PD)? PatientsLikeMe blog partner Karl Robb recently shared with us about his complementary therapies of choice: Reiki and Qigong.

Karl has been living with young-onset PD for more than 30 years and practicing Reiki for nearly 20 years. He and his wife, Angela, are the couple behind the PD blog, “A Soft Voice in a Noisy World: Dealing and Healing with Parkinson’s Disease,” and authors of two books. Karl – who went from “huge skeptic” to Reiki master and Qigong practitioner – acknowledges that practices like these may sound “too far out” at first, but he breaks down which symptoms they’ve helped him manage (along with taking prescribed treatments).

Reiki for Parkinson's disease

Karl practicing Qigong alongside his dog, Lily

Can you fill us in about Reiki and its potential benefits?

Simply put, Reiki is a very old complementary therapy that can assist the body to help itself through light touch. Reiki incorporates the use of the energy that is all around us. Reiki involves the placement of hands on different areas of the body to direct energy to release tension, reduce stress, lessen discomfort, and enhance well-being. A trained Reiki practitioner learns to transfer this universal energy through his or her hands and allow that energy to help assist the recipient. There are two ways you can experience the benefits of Reiki: You can receive a session with a certified Reiki practitioner or you can take a class to learn to perform Reiki on yourself.

My wife, Angela, (who does not have PD) and I have both personally experienced and seen many benefits of Reiki, including:

  • Alleviating pain
  • Lowering blood pressure
  • Temporarily stopping or reducing PD tremor
  • Increasing calmness

Reiki is very much like explaining an emotionally moving photograph, a sunset, a song, or a work of art; you can talk about it all you want, but not until you experience it for yourself can you fathom the raw power that it can offer.

What do you say to skeptics?

When I first learned about Reiki, I knew absolutely nothing about what it was. The truth is that Reiki fell into my lap, much to my benefit. I don’t have any problem with skeptics, because I was a skeptic. When someone starts talking about the concept of universal energy or energy being transferred from one to another, it sounds too far out to comprehend.

Once I tried it, I was hooked! I was a huge skeptic, until I tried it, experienced the results and saw dramatic changes.

I took a leap of faith and trusted in my practitioner, a former Army Ranger, who is now one of my dearest friends. Since my first Reiki treatment, Angela (who was also an admitted skeptic) and I have both become Reiki masters (completing three levels of training plus a fourth level of a one-year Reiki Mastership program), so that we can share and teach Reiki. I write a lot on my experiences with Reiki and encourage anyone and everyone to experience it, at least once!

What is Qigong? When did you learn it and why?

Qigong is an ancient form of moving meditation, similar to Thai Chi. The Reiki that we learned, Reiki Jin Kei Do, in January 1999 is composed of three parts: A six-movement Qigong, mindfulness meditation, and a hands-on Reiki self-treatment protocol – which all promote self-care. The first degree of Reiki is all about taking care of yourself. Often, after you learn the first degree, you have less need to receive sessions from your Reiki practitioner, as you can do much of the treatment on your own.

I find that Qigong brings me peace and a sense of calm, improves my balance, increases my strength and centers me. The six movements are quite easy and can be done standing or in a chair. Qigong helps me to feel more energized and clear of mind.

How does Reiki help your Parkinson’s symptoms, in particular?

I am confident that if I hadn’t learned about Reiki and incorporated it into my life, I would be much worse off than I am today. I use it to keep myself calm and relaxed, reduce or stop dyskinesia, clear my head, keep balanced in my mind and body, and even get a good night’s sleep.

The first session that I ever had not only improved my walking, relaxed me, put a smile on my face, and made takeout Chinese food taste the best that I can remember it ever tasting. For me, it improved almost all aspects of my illness.

I give myself Reiki almost every day. Sometimes in the morning I place my hands on my stomach and breathe to start the day with some Reiki. I use my breath and Reiki to help myself, if I experience dyskinesia. At night, I may do some of the Reiki self-treatment to fall asleep. Just as everyone’s Parkinson’s is different, you may find your experiences with Reiki are different than mine. Discovering Reiki and other complementary therapies can be a very pleasant experience with minimal risk, have real benefit, and leave you with a daily practice that makes a lasting impact.

What advice do you have for people considering a complementary therapy for the first time?

Don’t be afraid to try something that might be out of your comfort zone, like Reiki. Just be cautious, smart, and willing to give it a chance. Some Reiki practitioners may be willing to offer a brief session at a discount to let you experience it and see if you like it. Make sure that your practitioner does their own daily self-practice and that they have some experience with people with Parkinson’s disease or your related health issue. Referrals are always a good way to find your Reiki master.

How often do people do Reiki? What other complementary therapies are helpful?

You and your Reiki master must work out a schedule that works best for you both and one that you can afford. A Reiki session can last from 15 minutes to 1.5 hours and a session usually can be close to the equivalent to the cost of a massage, depending upon where you live. Most providers do not take insurance.

Reiki may not be everyone’s cup of tea, but what I do write repeatedly is that you must look for something that works for you and excites you! Massage, yoga and meditation are just three wonderful ways to get started and exposed to a therapy that may open new doors that you might not have experienced before.

You may find classes in your area that are devoted to people with back issues or mobility challenges. Look locally for adaptive yoga to find a class that may cater to your needs. Some instructors may come to your home for an added fee and some may have studios near you. I wish you the best on your path to health and wellness.

See what PatientsLikeMe members are saying about Reiki and Qigong, and join the community today to learn and share more about complementary therapies for your health condition.

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