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.

MS FAQs

This is a very Nanicentric FAQ, it’s culminated from common questions I’ve been asked. I know that for every person who asks, there is someone who wants to know but doesn’t feel comfortable asking. I get that. But I still want to do everything I can to make people comfortable with it. Because if my people can’t be comfortable with me, how will I ever be able to remain comfortable with me?



Living with MS FAQs

What is MS?

Multiple Sclerosis, MS, is a disease of the central nervous system and autoimmune system. There are lesions on the brain or spinal cord causing demyelination, little bits of the protective covering on the nerves is worn. It’s like pieces of the coating missing from an electric wire. It causes shorts and current that doesn’t get to where it’s supposed to. It causes difficulty or disability in areas controlled by the places where demyelination on the brain or spine has occurred. That can include mobility, muscle cramps, vision, circulation, cognitive functions and general malaise.


How can some people who have MS look just fine while others need wheelchairs?

There are different types of MS. I have Primary Progressive MS (PPMS), which means the demyelination has slowly progressed to the point where I can’t walk without a walker. Only one in ten people who have MS have PPMS. The most common form is Relapsing Remitting MS (RRMS). RRMS has worse symptoms; loss of mobility, vision, mental clarity, but it has those symptoms in episodes from a few days to a few weeks, then the symptoms can almost completely go away. Unless a person with RRMS is having a period of symptoms, you wouldn’t know it to look at them.


Aren’t you too young to get this?

Actually, PPMS is typically diagnosed around 40, about 10 years later than RRMS shows symptoms. My symptoms started just after I turned 40.


Will you die from MS?

While MS is currently incurable, it is not terminal. My life expectancy has not been affected by my diagnosis.


Will you get better?

The disease is not curable at this time, but medication and physical therapy have been known to help deal with the symptoms.


Do you feel sick?

I don’t feel sick, but I do tire easily. Everyday tasks take a lot of energy from me, but I can recharge by relaxing for a few minutes before I go on to my next task.


Are you mentally okay?

I’m actually much better now than I was prior to diagnosis. It was a great relief to know what I’m battling. Mentally knowing it’s okay to get help, to use mobility assistance, has taken the stigma away from using help.


I'm planning to start with these and make a FAQ page for this blog. I really welcome any and all questions and answers if you have them to add. These will be OUR questions, the ones that people with MS get all the time and the ones people who don't have it wonder and are maybe uncomfortable asking.

I also welcome guest bloggers who want to share an MS story. All I ask is that you plaese remember that this blog is meant to encourage positive communication and inspiration.

Leave a comment or email me at chroniclesofnani@gmail.com