A delicate matter for female travelers with FSHD

Tips and tricks for managing urinary incontinence

Editor’s note: This is a summary of the May Women on Wellness Zoom meeting. The members met to discuss their concerns and solutions around toileting while traveling. Note, many of these solutions are applicable for men. Thank you to Ranae Beeker, RN, and the WOW members for this valuable contribution.

We are all on a different trajectory on this FSHD journey, and as such, our needs are different. Not everyone has symptoms of urinary incontinence. My hope is readers will be able to take away tips and tricks that will keep incontinence at bay, for as long as possible. As always, our members were most gracious in sharing, what for many are thought of as intimate and sensitive perspectives, tips and tools.

A new research topic was noted: what is the percentage of FSHD women who are affected by urinary incontinence? Is urinary incontinence on the radar of our researchers, neurologists, physiatrists, and primary care providers? If you are challenged with urinary incontinence, make sure your FSHD provider is aware! (Editor’s note: The FSHD Society assisted researchers at the University of Iowa on a survey last year to investigate this topic. We expect there will be a publication soon.)

Overall, all agreed, traveling is a challenge. Often our destinations are based on toileting capabilities. Product research and trial and error very important.

1. As we are all built differently and have different needs, the importance of individual product research to identify what will help with our own specific challenges and needs, was emphasized.
2. Once we identify what might be helpful, it is most important to try the new techniques and to experiment before we actually use them in actual travel.

We are all our own experts… trust your instincts, and practice before you travel.

Incontinence and medical treatments/self help techniques

Members shared they have had success with the following:

1. Botox injections to help stabilize an overactive bladder. It was noted this injection has been helpful with overactive bladder symptoms such as urgency, frequency and leaking. Must be obtained from a physician. Administered by a physician approximately every 6 months. Noted the neurologist and PCP were positive and endorsed this treatment. And insurance covered after the deductible was met. However, each insurance policy is different. Please research yours well, prior to initiating this treatment.
2. Oral prescription medication such as Gemtesa or Oxybutynin (and many more are available). These were the two that were mentioned and noted to be effective for our members. Members noted they had less urgency and leaks, with better overall bladder control. If you are interested in a prescription medication for an overactive bladder, please consult with your physician. There are also over the counter medications available, however none of our members spoke to these. For more information from our members on this treatment form, this would be a great topic for our FaceBook page.

3. 

   A TENS-like device to stimulate the pelvic floor and muscles surrounding the urethra. Noting using this device has helped with overactive bladder symptoms. Product on Amazon.

4. Innovo. This device provides external muscle stimulation. I don’t believe anyone noted they had used it, but many were familiar with the product. One concern voiced with this product, is that it appears to be difficult to get on, as it looks very tight to the hips.
5. Kegel exercises and pelvic floor muscle exercises were also noted to be effective. Your provider or physical therapist can help with these specific exercises. Also can be found on a well sourced internet page.

Urinary collection devices

1. Travel Jane. This external female urinal is a small pouch with absorbent crystals (reduces odor as well) to assist in easier disposal. Place the open portion of the pouch up to your urethral meatus, tightly, The crystals inside the pouch absorb the urine for ease of disposal. Please read the instructions and details on the product to identify how much urine your particular pouch brand will hold. These can be found at many drugstores and on Amazon. Many members use these frequently and speak very highly of the efficacy and ease of use. It was noted, traveling with limited or no undergarments (underwear) to promote the ease of use of a product such as this.
2. Shewee. A female urinal, with a small funnel to direct the urine flow outside of the clothing and legs (can be multi-use). When I looked it up these are the instructions I found. How Does a Sheewee Work? ● Undo your trousers and push your underwear to one side. ● Place the Shewee under your urethra. ● Press the device firmly against your skin (but not too hard or you may bruise yourself). ● Aim the Shewee funnel away from your feet and towards the ground or toilet. ● Relax and urinate!
3. PureWick. An external catheter, designed for use by women (there is a men’s version also). The package label describes the product as: The PureWick system is a urine collection system that includes the PureWick female external catheter, a flexible, disposable “wick”, which is attached to a continuous low-pressure pump, the PureWick urine collection system. The system is designed to gently pull the urine from the external catheter into the sealed collection canister. The female external catheter works outside the body to absorb and wick urine. The wick is replaced every 8-12 hours or if it is soiled with feces or blood. Some notes:
   • This system, as it is now, would not be appropriate for public transportation
   • This device is not currently covered by Medicare, as it is not thought to be medically proven to be needed or effective. HOWEVER, The Ohio Department of Medicaid has approved its use as of 1/1/21, with the correct documentation and coding. More research on the product is needed to coax Medicare and other states Medicaid program into covering this device. (See report.)

Assistive devices/mobile toileting helpers and toilet concerns away from home

1. When flying, assistive devices are not counted as luggage. This includes medical devices such as CPAP/BiPAP as well as other necessary medical equipment. You may need to point this out to the airline personnel.
2. There is a law that states any commercial aircraft with the capacity to hold more than 100 passengers MUST have a closet for assistive devices such as wheelchair, walkers, canes. It doesn’t say if the closet must be big enough to hold a foldable power wheelchair. Many airline personnel are not aware of this law. Personally I noted, once I tactfully and nicely shared this information with them they went above and beyond to help me get my portable wheelchair in the closet, which unfortunately was ½” to big to fit…. But there are all sizes, so give it a try. This allows for your assistive devices to be closer to you at de-planing and for less damage potential.
3. Use of a transfer chair versus aisle chair to get into your airline seat. They are different heights and different widths. It was noted by members that airline staff are not always trained in the appropriate manner to transfer. Please be your own best advocate. If what the airline staff are recommending doesn’t seem reasonable or safe for your own specific needs, speak up.
4. The use of a portable toilet extender with travel can be helpful. This device is carried in cognito in a colored trash bag. It allows the added height to facilitate getting on and off a “foreign” toilet safely. If the toilet extender moves, use packing tape to keep in place (or a rolled up magazine or newspaper). This is the product (the hard plastic on top of toilet.)
   • Difficulty getting off the standard airline toilet was noted as a big challenge. We are often unable to push ourselves off the commode. The classic airline bathroom design allows for pulling up, but in a very tight space, with strong arms, legs and core muscles.
   • It was noted that the airline bathroom was much too small and not well sourced with grab bars to pull up from the low toilet.
5. Members noted using a bedside commode chair with the capability to sit over a normal toilet (also known as a 3/1 BSCC) offers just what is needed in terms of additional height and arms to stabilize with. Some are more collapsible for travel, than others.
6. Members noted the ability to use a Travel Jane or Shewee in an airline bathroom if you can still stand ok, and correctly place the product, then have the ability to dispose of it immediately.
7. Historically, Air Canada has not charged for a caregiver companion… we are not sure if this is still pertinent, but worthwhile to check it out!!!
8. Limiting fluid intake was mentioned by many members as a mechanism of limiting incontinence while traveling. It was noted the limitations of liquids and foods that break down to liquids the evening before and the day of travel. Sucking on ice chips helps to keep the mouth moist.
9. International travel, with different accessibility requirements in different countries, presents its own unique challenges. Research the countries and their accessibility laws, before you travel.
10. Family bathrooms in department stores and airports (to name just two sources of these) are generally equipped with low toilets for the general public and children. Higher toilets can be found in the ADA women’s bathroom.
11. As noted previously, the types of clothing worn on travel days are important. Many members noted the ease of wearing skirts, or pants that are easy to get up and down.

Urinary incontinence products

1. There are a multitude of different products out there, serving as urinary incontinence collection portals. There are many internet sites built just for these products. Amazon is but one of many sources of these products. A browser search of urinary incontinence products will yield many sites to review.
2. We noted that we are all built differently and there is no one-size-fits-all solution. There are many different pads, with different widths, sizes, shapes and absorbency differences. It is really important to read the label, note how the pad absorbs, what type of incontinence it is intended for ( light leaks, spurts, heavy flow), and how much it will potentially hold (in liquid).
3. The products that were mentioned were (but as noted above, there are MANY products out there to choose from): Poise, Always, Tena, Silhouette, Depends, Prevail, Amazon’s brand Bladder control pads. Read the pads specifications to determine if it is the correct one for you.
4. Members shared their ingenious method of layering different size pads while traveling:
   1. Use a large pad i.e. Tena Overnight pad or a brief liner as the first layer, on top of your underwear.
   2. Next layer is a thicker, longer pad, that is designed to be as long as you need for excellent coverage AND absorbent enough to collect how much urine you leak and how you expel it (fast, in spurts, slow, large amounts etc…) DO NOT remove the whole protection from the sticky layer, just enough on the top and bottom to keep the pad(s) in place.
   3. For the subsequent layers, DO NOT remove the whole protection from the sticky layer, just enough on the top and bottom to keep the pads in place. For many 2 or more layers are what it takes to keep dry for many hours of traveling.
   4. This way, you can go into the bathroom and remove and replace (if necessary) the wet layer without ruining the layers beneath. Noted that this method allows for staying dry for 8-11 hrs. Also noted, depending upon your anatomy the extra layers may keep the pads just where they need to be.
5. Another suggestion noted, while traveling and unable to use the bathroom (for whatever reason), do not wait until your bladder is very angry and ready to explode. Try to release small amounts of urine into your pad(s) at a time, this will help to ensure the urine is absorbed into the pads. The trick to urinating in a pad, is being aware how you are sitting (and how you placed your pads), if you lean back it will drain to the back (do you have enough coverage at the back with your pad?) if you lean to the front, it will drain towards the front (same question in reverse–do you have enough coverage in the front with your pad?). Also pulling up on your underwear when you stand, helps to assure the pads are where they need to be for a successful pad collection of urine, and not pants or underwear.
6. Noted by many, the importance of carrying a version of a “Wet One” for personal and hand hygiene.

How to express our concerns, problems, and needs regarding airline travel to the Department of Transportation

1. In a national call in March 2022, the Department of Transportation (DOT) hosted a day-long public call to explore complaints from disabled passengers and review what the DOT has in the works to promote ease of travel for disabled passengers. They made it quite clear that if we, as disabled airline passengers, experience any dissatisfaction, we need to share this with the DOT. If they don’t know of a problem, they can’t work on it. Share your experience! If you limit liquids for several hours to prevent a toileting accident, they need to know. If you had trouble with an assistive device, they need to know. If you have trouble transferring into your airline seat, they need to know! The MDA also has this as an important agenda item for their goals for this year and the next several. Here is the link to share this information.
2. The passenger’s bill of rights. It is in the process of being updated. I found limited, or rather incomplete, information on this here.
3. The DOT noted in this March call that they are working on providing wheelchair users with the ability to sit in their own chairs during their flights. It is several years off, and much work from then til now, but it was part of the conversation. This could be mentioned in your complaint/sharing to the DOT in reference to your airline travel, our need to sit in our own wheelchairs.