Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Thursday, July 4, 2013

Accessibility Tales

We had a fun vacation in June spending much of our time in and around Pennsylvania photographing freight trains and seeing baseball games with a couple days in Connecticut for our nephew’s high school graduation and party. As is usually the case, this was a trip of extremes in accessibility.

Winners and Losers

Pit Stops and Side Trips

Most of the McDonalds we went to had the larger wheelchair and family stalls with enough room for a chair without having to climb over it to use the toilet or get knocked in the head by the baby changing table. That’s also enough room to safely change a baby with a toddler in the room. We stopped at several McDonalds that had the door near the back labeled as a handicap door with easy entrance for a chair and no chicane to maneuver. I’ll also mention that McDonalds openly offers their restrooms as a “no obligation” stop for travelers and in general McDonald’s restrooms are the cleanest I see in travelling. They are maintained constantly.

Every Sheetz we went to had the large wheelchair stalls at the back of the ladies restroom too with plenty of room to maneuver and transfer. However a few of them had displays crowding the entrances to the aisles making it impossible for a chair to get through.

The Turkey Hill convenience store right next to the Turkey Hill Experience failed miserably with a sign for public restrooms that was actually the employees only bathroom and too crowded to get a chair to. However, The Turkey Hill Experience was a fun attraction and wonderfully accessible and accommodating. (Can I get big thumbs up for all the scoops of ice cream you care to sample?)

Baseball Parks

Oriole Park at Camden Yard does not have a family/wheelchair restroom on any level and the largest stalls still require backing in and parking the chair next to the commode making a walking required transfer. The Fan Store was really not set up for wheelchairs, but they were accommodating. (So were the fans, even to someone wearing the “wrong” hat.)

In the minors, Atlantic League Lancaster Barnstormers’ newer stadium has family/wheelchair restrooms and the stadium in general is very wheelchair-friendly. The Reading Fightin Phils play in the oldest stadium in the Eastern League. They have tried to retro-fit for wheelchair access, but handicap parking on a curb with the passenger door opening into a grass bank and the wheelchair access seats being in outfield obstructed view made the experience less than ideal.


The hotels this trip were feast or famine. The second night we booked 2 days at Super 8 in Harrisburg PA. A shower chair was not required in the original ADA in 1991 but has since been added to the hand shower required in hotel bathrooms in the 2010 ADA. The Harrisburg PA accessible room had a shower chair, but the bar for the hand shower was empty. The shower had been changed and the hand shower never replaced. (I improvised with a cup for hair washing and rinsing, but that takes more water!)

Shower chair at Super 8 in Lewistown, PA

We stayed at Super 8 in Lewistown, PA where there was no shower chair and we had to request one. They found a chair but it was too big for the tub and wouldn’t sit safely flat. The tub was also higher than my knees; there was no way I could step over it to get in. That night was another improvised part shower and part sponge bath from outside of the tub.

Stamford, CT Super 8. too short toilet and 
those 3 bars are it for the entire bathroom

Our 2 nights in Connecticut at Super 8 in Stamford were unquestionably the worst accessible accommodations of the trip. The spacious enough bathroom had a total of three grab bars clustered around a toilet that was less than 18” high. The shower chair didn’t fit in the tub. The door had less than 8 inches of space from the wall when opened and entrance/exit to and from the room wasn’t possible unless the bathroom door was closed. That's a fire hazard, especially if anyone, regardless of disability or not, is in the bathroom. The room was cluttered and while there was a microwave and refrigerator, they couldn’t be reached by someone in a chair let alone used.

Super 8 in Stamford CT
I'd never seen an "accessible" shower with no grab bars before.

* This isn’t meant to warn anyone away from all Super 8 properties. It’s just the ones we stayed at this time. In 2011 we stayed at a new Super 8 in New Jersey in a room that was Accessible Heaven.

There were two hotels on our trip that I give an absolute stellar rating.

America's Best Value Inn, Harriburg, PA
Accessible done right!

We stayed at America’s Best Value Inn on Front Street in Harrisburg, PA. There was room enough to move around in my chair and the bathroom was fantastic. The shower chair was similar to mine at home with a bench that comes outside the tub to transfer into the shower while sitting rather than stepping over the tub side. There were ample grab bars in the shower, toilet and sink areas.

The Red Roof Inn in Harrisburg was top notch too. It was recently remodeled and is a pet-friendly property. Talking to the front desk clerk in the morning I learned pet-friendly means all hardwood floors. That’s something to note because those pet-friendly floors are also wheelchair-friendly! This room had a roll-in shower and the room was well-ventilated and the drain set so well that little water escaped the shower area and the floors remained relatively slip-free.


There are still some real losers out there for travelers with disabilities, but don’t let that keep you home! There are some real winners too. I get a business card at the hotels where we stay to make sure I don’t stay at the losers again and make a point of staying at the winners when we travel to the same area. I’m also sending my praise or criticism with the hotel to corporate headquarters and franchise owners.

If you’ve had great or not-so-great experiences in your travels with whatever level of disability, I welcome you to share them in comments! Also if you have an MS or disability blog and would like to share links, I’d love to do that too!

Friday, May 24, 2013

Book It, Then Block It

I have some travel advice as we start into the long weekend when a lot of people travel. David and I do a fair amount of recreational travel, taking weekenders to pursue our railroad photography hobby and see some minor league baseball. When traveling with challenges, planning ahead is important.

I try to remember to pack snacks and bottled water for taking medications and because I know that becoming dehydrated happens faster and is an issue for me. Dehydration can just totally drain me physically and that can definitely dampen the spirit of fun when we travel. I also keep a blanket in the car. I have secondary Raynaud’s with the MS which makes me very sensitive to cold. Even in the summer the air conditioning gets to me and a blanket keeps me comfortable without parboiling my husband in his own sweat. (smile)

Another important thing is a hotel reservation. When we travel I’m in a wheelchair. While I use the walker or “furniture surf” grabbing the familiar stable things in the house sat home, it’s much safer to use the wheelchair when I’m in an unfamiliar place and will be going more than a few feet. When we make a hotel reservation we, of course, always reserve an accessible room. But that’s not enough to ensure that we’ll actually have an accessible room!

Last year when we checked in to the hotel at a conference we attended, my husband and I went to the desk together; he walked up and I rolled up. The clerk at check in addressed both of us, so I was seen. She gave us our keys and we went to the room. The hallway into the bathroom was narrow. There were no grab bars in the bathroom, no hand shower and a low commode; nothing was in compliance with even ADA minimums. We called the front desk to complain and get switched into the room we reserved. She said they were "out of handicap rooms.”

Out of them? We reserved an accessible room, how can they be “out of them?” I reserved with a credit card. If we just didn’t show up they’d charge my card, but they gave up our room anyway? There was still no excuse for not telling us, me sitting right there in a wheelchair, that the room they were checking us into was not accessible.

My research after the fact told me that hotels notoriously overbook accessible rooms. Reserving an accessible room is not a guarantee that you’ll have one. After making a reservation online or when making one on the phone you need to call the actual hotel and say “block the room.” That means they have to have an accessible room for you when you check in.

I don’t think that's okay. It is absolutely necessary, but not okay. Personally, I don’t think it should even be legal to offer to reserve accessible rooms and then not have one at check-in. Something needs to be done to make it impossible for hotels to reserve more rooms that they have. It shouldn’t be difficult to only be able to reserve four accessible rooms a night if you only have four accessible rooms. After four are reserved for any given night, no more show up in the system. Not rocket science or even major computer programming.

But, until a time when that error is fixed, we have to do it for ourselves. Make sure you call the hotel you’ll be staying at and tell them you just made a reservation for an accessible room and you want to block it. Also, while saying “handicap” may not be politically correct, don’t be too proud to use the word. We stopped at a hotel deciding not to drive all the way home one night and asked if they had any accessible rooms available. The clerk said “all of the rooms are accessible.” She must have thought we were asking if they have doors. Saying “wheelchair” made a huge difference in her interpretation. Use words like handicap or wheelchair when reserving rooms in person and when calling to block a room mention that you want to be sure there is a correct room when you arrive. Just because”the system” or some of the people in it aren’t up-to-date, doesn’t mean you should give up any of the things available to you to enjoy traveling.

At another time I’ll talk about the wild differences in quality an actual accessibility in different hotels and different places.

Monday, May 6, 2013

Who Has It Rougher?

A couple of years after diagnosis, I’ve found many ways to deal with MS. I’ve accepted that I have challenges I never thought I’d have and I’ve found ways to work around them or get help when I need it. I’ve worked hard to deal with my situation and be emotionally okay with it. But my state of mind is not where the emotional turmoil of my disease ends
My Dad is owed by a little dog. My aunt got the dog because she wanted a tiny lap dog, but this dog fell ears over paws for my dad. I feel my aunt’s pain there, the cat I brought home many years ago, swearing I’d leave home if he didn’t let me keep her, fell in love with him at first sight and they bonded into mutual adoration quickly too. Animals really do love my dad. Pop also seems to have a thing for females who end up challenged. You see, the little dog, Zara, has recently become blind.

I talked to him on the phone and he told me about her retinas becoming detached. The vet asked if she played rough with their larger dog or if she might have wandered off, but the likelihood is it’s because she is of a new breed that has a number of genetic issues. Like his daughter’s MS, Zara did nothing to cause her challenge and there is nothing she could have done to prevent it. Pop says that she seems to be adjusting; learning new ways to find her way and get to the food, find him for cuddles and get where she needs to be when he takes her out for a walk. Hmm, similar to my using the cane and walkers to get around the house, strategically placed chairs in the kitchen and a wheelchair and paratransit for appointments.  We both adapted to our situations.

While Pop told me what was going on with the little dog and how she was handing it, he made a comment that really opened my eyes and gave me some understanding. He said she seemed to be getting adjusted but it was just really hard to watch her stumble and bump into things because there was nothing he could do to help her. I asked him if that was why he had a pained look when he visited and I was using the walker to answer the door when my medicine was delivered. He said “yeah.” It’s hard to watch someone you care about suffer when you can’t do anything. He’d love to wave a magic wand and make me MS free and give little Zara her sight back, but he feels helpless.

Zara is getting adjusted, the fact that she is dealing with the new blindness says she’s learning and accepting it. She has no choice and instinct stepped in. That’s like me. I’m constantly learning and dealing with the limitations MS gives me. But although I have my frustrating moments, and trust me, I have my occasional burst into uncontrolled tears moments, I am not suffering, I am adapting; It’s what I have to do to survive. The people who care about me are the ones who are suffering. They suffer because they remember when I was able to walk, dance, and clean the house. They cannot fathom what it’s like to not be able to do those things. And I don’t want them to understand because I care about them and wouldn’t want them to live with my limitations. That’s also why I understand their feelings; because I’d feel the same way if it was any of them and not me.

My own husband tells me he doesn’t think he could cope if he had my condition. But he could, if he had to. When you have a challenge, you learn how to accommodate yourself; you adjust the things you do so that you can still accomplish the tasks you really need to. That doesn’t mean it’s easy, but you understand exactly what your limitations are and just how far you can push yourself. Your loved ones can’t possibly know what you’re going through and it’s even more frustrating to them than it is to you because they can’t help you.

I’ve been much more careful in the past week since having my “hmmm” moment when talking with my dad. The toughest thing I’ve had to learn with MS is how to release a little control and let people help me, but it’s made my life much easier to accept and even ask for help. As with any aspect of life, communication is so important to understanding. Whether I ask or it’s offered, when someone helps me I try to remember to include why I’m grateful. For example when someone holds a door open I say, “thank you that keeps me from skinning my knuckles.” I add just one line that lets them know they’re not just being polite, but they’re making an actual difference. We do things to manage for ourselves to feel less helpless, but there are things we can also do to let people, relatives, friends or strangers who actually do want to help, know that what they do is an important part of helping us cope. If we work together to make it easier, none of us are helpless.

Sunday, April 28, 2013

Still Not Cured

First off if you follow this blog and are still here, Hello! Thanks for coming back! I’m still here, still have MS. Oh come on, if I’d found a cure I’d blog about it. If I’d found a cure I bet a lot of people would be blogging about it. But no, no cure. I’ve just been kinda lazy about posting.

There have been challenges so far this year. On New Year’s Eve I was sick, I’d caught a cold and was feeling gravely throat and tired, a nasty cold. David brought me home Chinese and I got half way through the won ton soup and started feeling achy, like a fever achy. So I sat down on the couch and fell asleep.

David wasn’t feeling too well either, come to find out later a number of people we’d been with the weekend before got sick, and I vaguely remember him saying happy new year and asking if I wanted to come upstairs or just sleep on the couch. I opted for staying put. I awoke at just after 3AM, still achy and slightly chilled and when I tried to get up, I couldn’t. I tried a few different ways grabbing the sofa, the walker… My husband came down after hearing me crying and whimpering and tried to help, short of bending down and picking me up, I wasn’t going to be able to move. He called 911.

The first couple days of 2013 lack the clarity my memories usually have, especially ones that recent. After my first ever ambulance ride, I was invited to stay with the staff at the hospital for a few days. It was the flu! The flu amplified every MS symptom I have, which is basically that I went from barely able to move or function to not being able to move of function at all for a couple of days. No, I hadn’t gotten a flu shot, I never get sick, I only get an actual pesky cold every few years, why would I get a flu shot?

Accepting and living with a disease takes pretty much constant adjustments and you don't get used to every new challenge at once. I was diagnosed in 2011, but the symptoms have been there since 1996. The girl who “never gets sick” has actually BEEN sick for 17 years! This year, and every year from now on, I’m getting the flu shot!

The hospital stay that started on January 1 took care of my out-of-pocket limit with insurance so, while I had almost finished my payments for my MRI in 2012, now with the hospital stay added It’s going to take until October…2014. The upside of that is that for the rest of THIS year, the insurance company picks up the full bill so I’ll ask both my PCP and my neurologist to make sure they order anything and everything they might want done next year by December!

I’m doing okay now, except that the reality of living in a 1950s era two story plus basement house is starting to take its toll. We did get a shower chair that I sit on outside the tub and pull my legs over and get out the same way. That has taken some of the shower anxiety away. There are a few other things I need to do as soon as I can. I need elevated toilet seats and grab bars in the bathrooms now and between the pain and pinched nerves that are almost permanent in my neck, arms and shoulders from climbing and the jeans that are wearing out quicker than I can replace them from sliding down on my butt, I really need to figure out a way to get a stair climber. I’d say the upper body and rug burn pain is almost worse than the back and leg trouble from the MS! I really want to work on finding a way to remove all the steps from my world whatever way I can. It’s not just for comfort, but safety too.

With the out-of-pocket done for the year, I’m going to be getting a power chair! The only thing I’ll have to pay for is the cup holder. My dream was that I’d use the power chair and our paratransit service for my husband and me to go to Mud Hens games, then I’d want the cup holder, right? It would also hold a bottle of water at the farmer’s market or when I’m dropped off an hour before my doctor’s appointment and with a power chair I was going to have the mobility to go to vocational rehab and get a job! So, I’d want coffee at work too.

Except that the power chair won’t be leaving the house any time soon. We don’t have room to install a ramp. I can still use the chair in the house and it has leg lifts so I can keep the swelling down in my ankles that I get from not enough weight-bearing exercise. We can still use the manual chair for baseball and doctor’s appointments and that cup holder can motor coffee from the kitchen to the dining room without me spilling it now. The carpet will appreciate that.

I’m not totally giving up on the power chair, but it’s going to take some time to come up with the solution. I’m open to any suggestions that don‘t include “you need a ranch.” We’ve heard that from both sides of the family. No one who’s told us that has ever said it with their checkbook open though, ya know? But any smaller-than-a-new-house affordable ideas, even crazy ones, are welcome. In my world crazy has often been the mother of brilliant!

Okay, for now I’ll sign off. Later this week I’ll post about friends, family and caregivers, especially caregivers, and what those of us that have the disabilities need to know to understand what they’re dealing with so we can help them cope too

Monday, November 19, 2012

A Type-A Mind With A Type MS Body

I find that my writing here is sporadic because either it’s sunny or it’s raining. The last few months have been rainy ones in my mind. I am by my nature an optimist, which really helps in living with my unwelcome guest for life but being an optimist also means I have my limits with negativity before I walk away. I can’t walk away from MS. Okay, truth is I can’t walk away from anything, I roll away. That last line was a joke; I’m not that far in the muck.

Since the beginning of August I’ve been frustrated with things I’d planned to have done this year that I could see weren’t going to be anywhere near “goal met.” By the end of August I was supposed to have the cleaning and organizing done in the house. I could see in the beginning of August that I had barely scratched anything. I had to accept that I can’t do the lifting, the moving, even the bending and sorting make me tired and I need a break after a while. I can’t be the “Type A” person I once was; I won’t ever be her again, not physically.

The thing is I AM still her mentally. I just haven’t caught up with the physical limitations in my expectations of myself. I realize that I have to sit in the kitchen to cook or do dishes and mentally I fight with myself because “I have a chair in the kitchen, isn’t that enough?" Well, no, it’s not enough. Stretching my arms to move things on the counter makes them sore and reaching up and into the sink makes my back tired. I will get a taller chair for the kitchen, that will help my arms not get as sore, but I’m finally realizing that won’t make it easy, just easier. I’ll accomplish things slower than I used to, some things a lot slower, some things not without help. Do you know how hard it is for someone who is mentally still type-A to ask for help? I’m not talking delegating a task that’s part of a project; I mean ask for help because it’s something simple that I can’t do. I have absolutely no problem accepting help when it’s offered, but asking for help? That's still a big change for me.

So now, a year after what I thought was the worst of dealing with Primary Progressive Multiple Sclerosis ended, the months of progression without the drugs that have fixed my two symptoms that agonized me the most; fatigue and brain fog, I have to take some time to reassess how I'm coping and what’s next. I know that I desperately want a power chair and a van with hand controls. I can’t drive a regular vehicle anymore and my arms just can’t even dream of getting me to a bus stop to use public transportation. I wouldn’t have the ability to do anything one I got somewhere anyway, when my hands/arms get tired I can’t even make the wheels of my chair move. I’d need the van because there is no way a power chair can get into our house; the point is getting me out of the house anyway. The biggest reason I want the power chair/van is so I can find a job. I so desperately want to work again, contribute to the household and pay my own way, have things I want again.

This isn’t all doom and gloom! Researching my goals has helped me keep my sanity. I actually have a meeting next week to be okayed for the public transportation program for the disabled who can’t board regular buses. A ride is twice the cost of a regular bus, but they come to your door and drop you off at the location you’re going to. I’m still working on the logistics of getting the wheelchair in and out of the house. I’ll see next week how much the service entails. This service would enable me to get to my doctor’s appointments without having to work around my husband’s work schedule. It will also enable me to go to the Bureau of Vocational Rehabilitation so I can get myself ready to work again! A job is a way to save up for the copay on the power chair and credit to get a loan and make payments on a van. Then I start to get some of my freedom back. And I accept that that freedom won’t mean I can go out and play a round of mini golf, but I will be able to go to Starbucks on my own and go in to have a have a latte.

I'm really getting more information and tryng to be more of a self-actvist, so I think I'll be posting more now.

Saturday, June 30, 2012

A New Perk

There has been and will be again complaints about things that just don’t work as “accessible.” I think the people who design accessible hotel rooms, doorways in restaurants, public bathroom stalls, should be required to spend a day in a wheelchair and a day with a walker with a knee or both in a splint to freeze it so they understand for whom they are designing facilities. Really, try to maneuver a wheelchair between two doors that have a hallway with a right angle turn in between them, or step over a door frame that rises up an inch with a knee that won’t pick your foot up much higher than that. Stand in a shower with bad balance when there is not a shower chair. My husband and I like to travel on weekends and I’ve been there with all those and more!

I think the most laughable recently has been a rest area in Indiana on the way to my nieces’ graduation. My aunt and I were going into the ladies room. She pushed my chair in to the doorway. It was one of those walk in turn and immediate left and then another right to be in the actual rest room. My chair went in and the footrests hit the wall. The majority of the chair was still in the hallway. I couldn’t tell you what the handicap stall was like because there was no way I was getting into the actual bathroom. We ended up getting off the freeway at the next exit to use the facilities at a gas station.

I greatly prefer the more modern rest areas that have separate family/handicap stalls. Those stalls are wonderful for both purposes; family and handicap use.  If there is a family rest room available I use it. I figured that out at a St. Louis Cardinals game last year. When I asked where the ladies room was, the red-jacketed gentleman offered me use of the family/handicap bathroom. It may sound silly, but I’d never had a better bathroom experience at a baseball game before that! Note to anyone that hasn’t used them yet; the family and handicap rooms are actually designed to protect small kids and allow users of chairs or walkers a comfortable and safe bathroom stop. As a rule at an event or attraction, the first thing I do is locate the family/handicap bathroom so I know if and where it is.

But in the title I promised a perk. The family/handicap bathrooms are a plus and better than a supposed-to-be accessible stall. The perk is courtesy of the US National Parks!

On our recent vacation to the Outer Banks in North Carolina, we’d planned to visit the Wright Brothers museum and a few lighthouses. I wanted to proactively look into the accessibility of the different attractions. There are ramps to the monument at the Wright Brothers museum, but there are no ramps or elevators to get a wheelchair to the top of any of the lighthouses. Okay, if there had been a way to get to the top of a lighthouse in a wheelchair I’d have been shocked.  What I did discover is the Access Pass!

The Access Pass can be obtained if you have a permanent disability. The card can be obtained at any National Park or monument that is staffed. I got mine on the way in to The Wright Brothers Museum. The Access Pass allows me to visit National Parks and Federal Recreation Ares for free. That’s one personal vehicle in the park or the pass holder and up to 3 companions for single admissions. The wheelchair is not keeping me out of the National Parks, it’ making it easier to fill up my National Parks Passport with more stamps! We got our stamp for Cape Hatteras Lighthouse and I wheeled all over while David, my husband, climbed to the top.  I got lots of pictures, including of him sat the top. It wasn’t “easy-peasy.” At the end of the stop my arms were falling off! But it sure beats sitting at home looking at someone else’s photos!

Photo credit: Nani!

National Parks Access Pass FAQ

Thursday, May 31, 2012


Last night I tried a new sleep position, or maybe sleep prep. I got in bed and straightened my body and my legs started to feel like thy were going into full spasm mode. I pulled them up into almost a fetal position, difficult for me because I need to use my hands to encourage my right leg, especially when I’m lying down. Then I arched my back backwards and slowly moved my legs straight. No spasms. In fact, it felt good!

I know from when I use the walker that every now and then I have to stop and straighten up, arch my back a little to stretch it. It actually gives me a few more steps that I have the power in my right leg to fight the foot drop. The messed up disks in my back actually do like stretching. My favorite of my therapy exercises are the ones that stretch my back backwards. It makes sense that stretching that way would feel good for sleeping. In fact, back arched and legs straight is how I fell asleep, faster and with less position changing than usual for me. I woke up this morning with a lot less pain than most mornings and it seemed like a touch more stability.

I’m not ready to run a marathon or even go down the stairs on my feet, but it was nice to wake up feeling a little stronger. I know MS is different for everyone; custom diseases make us feel so special, don’t they? But I do want to encourage everyone who is living with symptoms to never give up trying new things to make the symptoms a little more manageable. MS isn’t going away anytime soon, so embrace the disease, it’s yours, and make it easier to live with, one little coping idea at a time.