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.

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

Streeeeetch

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.

Crisis Mode Kicks In

It is NEVER funny when someone falls! The last time I wrote something about falling in a forum, people actually replied that they thought the story was funny. How is something where someone can get really hurt ever funny? I just don’t get that.

One fear that always in the back of my mind is what happens if I slip in the shower. Years ago my mom did that when she was visiting Grandma and my dad had to go pick her up, bringing someone to drive her car home because she’d dislocated her shoulder. The thought of being naked and wet and having to have emergency people get me out of the tub and take me to the hospital is mortifying. Yesterday I got to find out what I’d do.

The most dangerous parts of flying an airplane are taking off and landing. Basically the same is true for showering if you can’t really walk at all without assistance; getting in and out of the shower are the most dangerous times.

Yesterday I was feeling full of energy and although my right leg has been especially weak at times for a few days, I have a shower chair, so I’m not standing in the shower, I took a late afternoon shower/hair color break. The hair color was my ultimate undoing. In think the extra 15 minutes of sitting on the shower chair made it stiffer when I got up after finishing the shower.

I followed my careful procedure for getting out of the tub, using the wall-mounted soap dish for balance and the wall for support, using one hand to move the shower chair to the outside of the tub so I could move to the back wall to grab the cemented-in bases of the towel bars while I climb out, good leg first pulling the bad leg over when I’m on solid dry ground. Only yesterday, when I stood up and carefully moved the chair to the outside of the tub, I felt my right leg starting to buckle. I grabbed the soap dish and tried to tense up my leg muscles to keep me from falling. I almost regained balance and rose up too, but then I started slowly folding to the ground again. When I was close enough to not get hurt, I let go. Of course that’s the detail my brain recalled as I slumped down in slow motion. It probably happened faster.

There I was; not hurt, but wet and naked sitting in the tub. I tried to get my feet flat so I could move a little; sit up straighter and decide what I needed to do. Since the bathtub was still wet too, my feet slipped on the wet surface and I realized the first thing I needed to do was dry the tub and me.

Good tips time! When I shower, it’s usually after my husband leaves for work, so I’m home alone. Part of shower prep for me is to make sure I have towels on the towel bar so I can reach them after I sit back down on the shower chair I move to next to the bathtub, my cane next to the towels on the bar so I can grab it if I need it and my phone on the counter in case of emergency. It’s good to be prepared for the things you never want to happen.

I managed after a couple of minutes to regroup, to stretch enough to grab my cane and use the cane to pull down the towels. Two towels in the tub dried me off, except my hair, and the bottom of the tub except what was under me. I had to do some moving and resting in between moving to get that taken care of. Once the side of the tub was dry enough to safely do so, I used the handle end of the cane to drag the phone down and over to me. I said it was a late afternoon shower and I wasn’t hurt, just too week to stand up. so instead of a 911 call, I called my husband at work. He was due to be off work in an hour and I just wanted to let him know that I may very well still be sitting in the tub when he gets home.

Using the towels and taking frequent breaks in between little bits of movement, I managed to get myself up on my feet and out of the tub – 40 minutes after I fell. I texted my husband to let him know I was texting from the bedroom where I wrapped up in a blanket with three pillows supporting my back and read for another half hour before I got dressed and went back downstairs.


As a result of yesterday I realize that I really need real live grab bars in the shower that I can grab with both hands and use instead of the wet tiled wall to support myself. Also, perhaps an extension of the chair or a new chair that can extend outside of the tub too so I don’t have to step over. Maybe if I’m coloring my hair, I should get up and stretch my legs a little while the color is setting instead of remaining sitting in the tub is a good idea too.

But I learned that my “crisis mode” brain still kicks in. Boy the temptation to break into hysterical defeated tears was there at first, but I pushed it away to work on a solution, like I have all my life. So, take that, MS! Even with the bad legs, I’m still me and I’d still last for a while in the event of a zombie apocalypse. I have sound survival instincts…and a grave fear of being rescued wet and naked. I have a few bruises that have shown up today, but I’m okay; and my hair color looks great!

Driving Legs

Sorry that I haven’t written in a while. But this is my Place where I write my observations, troubles, triumphs and concerns related to me living with MS. There haven’t been a lot of those lately. That’s a good thing!

Still, I have a few followers and I want you all to feel free to comment and share your opinions and thoughts. I also invite anyone who is writing an MS related blog to send me a link at chroniclesofnani@gmail.com so I can add the link here. If you don’t have a blog to share but you do have a personal story or information you’d like to share as a guest logger, please email me your post copy and I’ll post it. The most important thing is we, or someone we love, share this disease for which there is no cure, yet. Scientists and doctors are working on new an even better ways of treating multiple sclerosis. Perhaps someday there will be a cure. In the mean time we all have to live with MS as best we can. For me, writing and sharing is one of the many ways I deal with it, one of the ways I keep the negativity away so I can continue to be happy and be the best me I can, even if that awesome me doesn’t really walk anymore!

My husband and I went on an all-day drive photographing trains and barns and enjoying the sunshine! Great source of vitamin D, you know, so keeping the sun roof open was a must! When we do day trips we bring the wheelchair.

There are a few reasons we bring the wheelchair instead of the walker. The first is speed. I am terribly slow with the walker. If we’re out in the country areas and I ask for a “pit stop” it may be a while before we get back into a town where we can find a rest room. Just imagine, ya gotta go and you stumble slowly with a walker. Hmm… The other choice is your Hubby brings around your chair and he pushes you right up to the ladies room door. See the advantage? I’ll wheel back into the store or restaurant we stopped at, but when seconds count… Okay, it's more like when avoiding sudden stumble when you’re concentrating on “other muscles.” But you see what I mean. I’m sure many of you deal with the shortened tolerance time between the urge and emergency.

Next is we usually eat at least one meal in a restaurant rather than carry-out. It really is my preference to use the wheelchair for restaurants. I don’t even want to imagine the horror of stumbling into someone’s table while they’re enjoying a meal, let alone that I can’t keep up with a host person showing us to our table.

But honestly, the most important reason the wheelchair is better for day trips is that after we’ve been in the car for a couple of hours, my legs become very cramped up and spastic. At home I stand and stretch my back and legs about every half hour. We wouldn’t get very far if we stopped every half hour when we travel. The wheelchair means I can pull myself up and stretch enough to relieve any spasticity before I get in the chair. Then the grab bars in the handicap restrooms are not only good for balance and transferring, but I’ll grab them to do a few serious stretches before I go back to the car.

The cramping and spasticity are my riding trouble. Driving is a rougher issue! I wouldn’t ever drive for two hours, I can’t. I discovered just how much work the hamstring muscles do pushing the pedals and moving between them. After about an hour, my right hamstring is very sore! Where the cramps and spasms as a passenger need a good stretch, my leg needs to just rest, be elevated and rest if I’ve driven more than an hour. My Physical Therapist has officially suggested hand controls for my car. If the passenger time is an indication, I’ll, be able to drive a couple hours and take a stretch stop. I know the hand control kit is free with a new car, but to add it to my existing car is a decent expense. I’m going to see if our insurance would cover part of it if I have a prescription.

So, anyone else have any driving/riding difficulties? Do you travel? What things do you do to make traveling more comfortable?

It Hurts Means It Takes Longer

Last September, before I started Gilenya, I’d developed a couple of new symptoms. The first one I experienced was the weirdest one. My tongue went numb. Imagine feeling like you have a coffee burn on your whole tongue and it feels that way all the time, in my case for a month. That’s one of the things that I’m happy to report stated gradually going away by the afternoon of my first dose of Gilenya and hasn’t bothered me at all since early December.

The other new symptom in September has calmed down, but it hasn’t gone away. When I sleep on my left side, I will get numbness in my left arm, but not total numbness. I get muscle spasms and awful cramping pain in my left hand. When I say awful pain, it’s wake me up whimpering and I can’t even put weight on the hand to balance myself to try to sit up. I do manage to sit up and the pain instantly starts to subside, but a dull pain and tingling remain for a while. For a few weeks last fall that was an every night occurrence. Thankfully, now it’s only a problem when I sleep on the left side and I’ve retrained myself to sleep on the right, which is not the normal comfortable side.

I’m bringing it up today because I’ve awakened in pain from it the last two mornings at about an hour shy of the minimum sleep I usually need. Obviously, I’m typing, so my left hand is better now, but there’s a twinge in my left shoulder. I think that could definitely be what set off the night pain in my left hand again. Well, that and yesterday morning when the pain woke me I was on my left side. Old habits die hard there.

I’ve been working on a major reorganization on the house. I want to do everything I can to make our 1950s house a kinder, gentler, more accessible home. That means I’ve been moving things around in boxes scooted on the floor, lots of reaching and I’ve even learned how to sweep and mop while sitting in a chair. That's more bending and reaching. It all increases what I’m asking my upper body to do. That includes my left shoulder and arm, ultimately the hand! I think the spasms in my hand coming back are a sign to slow down!

I started what I call the “White Tornado Project” knowing I have limits. The project is to make it easier to live in my own home within those limits, but it also tests my limits so I know what they are. I’ll take it a little easier today. And I deal with small delays in the project. If I accept that I need to slow down a little and realize what I can accomplish, I can still have everything I want.

New Day, New Keyboard

That’s how my day started, switching out the external keyboard I use at home with my laptop.

I usually drink a big mug of turmeric tea about every other day. Turmeric has wonderful anti-inflammatory qualities and it’s a homeopathic treatment for MS symptoms. I make the tea with 2 cups of near boiling water, ½ tablespoon of turmeric, a packet of Real Lemon and 2 packets of Splenda. It’s an acquired taste, but it does grow on you. I actually like the combination of bitter, sweet and citrus. Last night I discovered that I’m out of Real Lemon and grabbed a packet from the Real Lime box. I think I like the lime better! Anyway, I pour the hot water on top of the dry ingredients and let it steep.

My husband brought my tea in from the kitchen. It’s big cup and I can’t carry it in myself without spilling it. He had the tray I usually put on the kitchen chair to push it over to the dining room table. Cool thing is the time it took him to get a break from his game was just enough to steep it perfectly! If it’s not steeped enough the turmeric doesn’t blend in and it’s gritty. I don’t really know how much it actually does for my symptoms, but it relaxes me and that does help any pain fade. Maybe that’s where the notion that it quelled MS symptoms came from. The official word from my Neurologist is that there aren’t any homeopathic cures that have shown any significant improvements in symptoms. I firmly believe that emotional and psychological factors play an important role in ANY healing and anything that helps your brain work on healing is a good addition to medications and physical therapy. And also, I like it. I first tried the tea last spring and the flavor makes me feel like spring.

Anyway, the keyboard. Last night my husband got home a little later than usual and as dinner was ending, I was feeling tired. I’d managed to mop a good bit of the floor in the room I’m putting a new bookshelf in so I can place the shelf after I assemble it. I mop sitting in a chair. It looks silly, but the floor is clean and I did it on my own without falling! And there was no immediate pain or even fatigue. But I was tired and a little clumsy earlier than usual last night. The floor looks great and it was totally worth it!

My hands were weak and slippery-dry from the floor cleaner. I sat in front of the keyboard holding the last few swallows of my tea, when the cup slipped from my hands. I caught it, but not before it sloshed a few drops of tea on the table, a little under the laptop, a little on the extended keyboard! Everything seemed like it was working fine after I finished drying up, but this morning, no space bar! Fortunately the laptop is working fine and I had a backup keyboard.

So, try the tea! It’s got a complex but soothing flavor. Just don’t hover it over your keyboard!

Do you have any homeopathic things you do to accompany your medical treatments for MS? Please share!

Nothing Is Too Small to Talk About

Sometimes I get a weird MS thing where just as I’m falling asleep I “hear” a loud noise that wakes me. I’ve spoken to other people with MS who have the same thing happen, so it’s not an odd thing that’s exclusively me.

It started last summer when as I was falling into sleep I heard the loud sound of a cat screeching outside the open window. My eyes shot open and I shook my husband asking if he’d heard it. Of course had he heard it, he’d be awake. It was very loud. But as I sat up in bed the sound from outside was still, not at all like there had been any kind of ruckus from a cat. I even had my husband check on our cats to make sure they were okay. The sound had been that real. Our cats were okay and I heard nothing else from outside. I decided it must have been a very vivid dream, nightmare, and I was actually further asleep than I thought.

A few weeks later the same thing happened, but this time it was the very loud sound of a large car screeching, braking, on what sounded like our street, right in front of our house. This time my husband was still downstairs on his computer and there was no motion like anything that loud had happened that close.

It happened again, sounding like a drop of water amplified through concert speakers. It started happening more frequently, about 2 or 3 times a week! One night just before I started my disease modifying medication, I awoke after hearing a gunshot that seemed like it went off right next to my ear. It was becoming more and more disturbing. I was sure it had something to do with the MS but I wasn’t sure if it was a new symptom or just powerful suggestions my mind was acting out from fear. All the sounds that awakened me were loud and negative and gave me a frightened awakening.

I talked to some other MS patients in a discussion group I take part in. Roughly half have experienced the same thing. It was actually a comfort to all of us to know we weren’t alone!

Discussion and communication is so important in every aspect of our lives including and perhaps especially concerning MS. There is no such thing as “a little thing” or something not important enough to tell your doctor. If you are the only patient your neurologist has who is experiencing something, tell them anyway. If they speak with a colleague who mentions that 3 patients have mentioned a symptom and it’s the same one, well, now that’s 4, you’re not alone. Maybe that one “little thing” is a small piece that completes a section of a researcher’s puzzle. Doctors and Researchers need to know what's going on with us to do their work effectively. They don't have that information if we don't tell them! Maybe what seems like nothing is the key to something huge.Don’t take the chance of not mentioning it to your doctor!

I’ll be going back in to see my neurologist next month and I’m going to mention the "dream noises” then. By the way, since starting my disease modifying drugs, the dream noises still happen, but much less frequently and they are slightly quieter, happy, noises. Makes me think it might be a little bit me and a little bit symptom since I’m not alone. It’s certainly worth talking about.

Have you or someone you know with MS experienced "dream noises?" Share your story and be sure to tell your doctor!

Welcme 2012

Happy New Year! I hope everyone had a safe and fun celebration last week. My husband was working until 10, so I had a quiet nigh scrapbooking until he got home and we watched Lady Gaga and the ball drop in New York. I’ve had rowdier New Year’s Eves, but after a very active Christmas, I liked the quiet night.

For me 2011 was a year of challenges and changes. My MS diagnosis was in June, but the first half of the year was the increasing inability to walk or even balance and fatigue with 3 MRIs, a CT scan and countless draws for blood work. After diagnosis there was an EEG and a couple EKGs to test me for suitable medications.

I will mention a couple things about treatments. First, read all the information you can about any medication before you take it. Have a really good idea of what the drug is supposed to do for you and what side effects might happen before you take the first dose. You have to work with your doctor and your doctor has to work with you to find the treatments that are right for you. MS is a customized disease. It’s not the same for everyone, so you have to find the right treatments and the right doctor for you. I have a neurologist, along with his team, that I am so happy with. They all listen and ask questions when I tell them what is going on with my situation. I also know that my questions will be answered. When I was concerned about what I thought might be a side effect, my neurologist called me himself to ask and answer questions.

I’m taking oral medications, Ampyra and Gilenya. As I understand it, they are just starting clinical trials of Gilenya for Primary Progressive MS, but my doctor said I had some swelling like there is with RRMS in my MRIs and we tried it. I hope and pray that the trials show similar results in other PPMS patients as I’ve had! The incredible fatigue I’d felt all year was gone by the end of the first week on Gilenya. I got to truly enjoy the holidays in 2011 because I had my old energy level back.

Therapy exercises seem to be helping me strengthen and get my leg muscles helping me balance better. I still use a walker for short distances, like a stop at the drugstore or the bank, and a wheelchair for longer distances or recreational outings, like sporting events or going out to dinner. I have a really great support system at home. My husband and I communicate well in understanding the areas where I need help and the areas where I psychologically need to at least be able to try to do things on my own.


I really suppose I could write a book about my personal MS situation, so I could easily write one very long post introducing myself, but I welcome any questions you have about me and my MS, because everyone’s is different, and I’ll answer them. Right now I’m working on ways to make our 1950’s Colonial more user-friendly for me. I figure there will be things we do in the next house we live in ahead of time, but for now, I just need it to be a little easier.

In the next couple of months I’ll be posting photos and telling about things I use to make life easier and decisions I’ve made. It still comes down to an easy choice. This disease is not fatal but it will be with me the rest of my life. I can be frustrated and depressed all the time or I can adapt and enjoy my world. It’s not that I never get frustrated, but I choose to shake off the frustration and be happy.