With Progressive MS, there is not a moment free from the thought and feel of MS. Pretty scary? This series of articles started with an explanation of the different types of MS and then continued by expanding on Progressive MS. Some of the information paints a bleak picture, but let me add a personal touch that should make it less scary.
Here are stories from people living with Progressive MS, including me, meant to enhance the picture of Progressive MS with a focus on the human side. My sincere thanks and appreciation to the contributors: David Madison, Beverley Rothstein, Denise Walbrugh and Michael B. Gerber. Each of these stories shows there can still be positive quality of life through diagnosis, symptoms and daily life with Progressive MS.
There is probably something in these five stories that sounds familiar to every MSer. Diagnosis that takes a number of frustrating months or years episodes and tests preceding the introduction of MS is similar for all of us. Every MSer knows that feeling...and fear...before the mind-blowing pronouncement. Michael B. Gerber says, "Imagine waking up one day and realizing that your life, every aspect of it, is forever changed." Every MSer knows that feeling. Those of us living with a progressive disease course see that initial change evolve into gradual degeneration toward disability. I'll begin with my story.
When I was first diagnosed, I felt relief because all of my symptoms finally had a name. Facing the unknown is more frightening than facing MS. I quickly learned that I had a lot to learn.
I went through grief stages. I did not think it would change my life as much as it did. I bargained with myself; "I'll rest more tomorrow if I get through today." I'm sad for things that will never be, but my acceptance brings an inner peace, helping me make new pathways. All of these feelings revisit now and again.
Soon after I eased into Secondary Progressive MS, I moved in with my my friend and sweetheart who soon became my caregiver. I consider myself lucky because my boys were not babies and my sweetheart is committed to my care. I'm grateful for opportunities and adventures yet to be.
Over the last 20 years, I have had the following symptoms, some have come and gone and come back again, others are always with me: Balance issues, Bladder problems, Blurry vision, Double vision (diplopia),Bowel problems, Constipation, Burning sensation in feet, Depression, Emotional lability, Excessive daytime sleepiness (somnolence), Fatigue, Foot drop, Heat and cold sensitivity, Heavy sensation in legs, Lack of muscular coordination (ataxia), Night-time leg spasms -- and sometimes daytime, too, Numbness, Tingling, Pins & needles (paresthesia), Optic neuritis (inflammation of optic nerve), Severe Osteoporosis, Pain, Restless leg syndrome, Stiffness/spasticity, Swelling in hands and feet, Tremors, Trigeminal neuralgia (tic douloureux), Uhthoff's phenomenon, Walking difficulty without aid and now totally non-ambulatory, Weakness, Paralysis, No function on right side.
It seems to be such a long list, but I am grateful it is not longer. I am grateful that some of thes symptoms give me breaks and that some do not last for long periods at a time. I did not include that I am slow and awkward, but that came with the MS. The list is long enough.
Today I am on medical disability retirement. I advocate for MS, disability rights, women's rights, censorship, and world peace among the occasional stray good cause. I spend time with friends and family, sometimes through the Internet where I have met new friends and rediscovered some old ones, sometimes in person with friends, children, grandchildren, and, of course, my life partner. I do surf the Internet, participating in more networks than I can comfortably handle, and making new discoveries that hold my interest for awhile, or perhaps a long while. I play games in hopes of keeping my mind sharp and because it is just fun.
Most of all, I write. I write using voice recognition software or my fancy three-fingered typing style.
I first met David when he commented on one of my posts. He has Primary Progressive MS (PPMS), and from his comment I knew he had something interesting to say. David's story helps us understand PPMS.
David suspected he had MS just two weeks after it started. His mother was an MSer so even as a youth he knew what it looked like. There was a year of trying to convince his doctor, taking tests, and taking antidepressants because his symptoms could be caused by depression. Really? Then he finally was told what he knew all along -- he has MS.
David's MS symptoms include extreme difficulty with ambulation. Without a walker, he "wall-walks" by holding onto secure items near him. So far he has lost no upper body strength, speech, or vision. Lucky David.
David reminds us that life does not have to revolve around MS, even when MS is particularly aggressive. There are other interests that add joy to our lives. David explains, "I fill my days writing articles about astronomy and finding the best images for the articles. I post them on the SpacePort.us. Once in a while they talk about space there, but most of the time it is just conversation between friends. Since I need to describe how gravity changes the shape of distance and time, I study calculus when I run out of other things to do. While I love watching movies such as the ten year StarGate run, I do not have much time for that any more."
I can attest to his skill finding images. He showed me a galaxy image shot with the Hubble Telescope, and the same galaxy with more color...better then the Hubble Telescope! Look through the Hubble Site Gallery to get an idea of the beauty of astrophotography that David works with every day.
Beverly is very straight to the point. She says when diagnosed, "I felt angry, sad and fearful!."
Beverley says since 1993 she experienced "tingling, weakness, loss of balance, dropfoot, fatigue." Since 2001, she added "essential tremors."
Beverley has learned to go day by day....and enjoys each day as best as she can. Beverley is active on the Internet, able to spend as much time as he wishes. On Facebook, where we first found each other, she created a group called Persons Striving to Survive with Multiple Sclerosis. She also started a support group in Montreal three years ago.
Leaving her MS behind for awhile, she is active in the Montreal Jewish community group. And here's an exciting twist -- Beverley participates in adaptive sailing! How fun.
Beverley has a personal graphic on her Facebook profile with her picture next to a mantra that says: I have MS and I'm Fabulous! I think she may be right.
She tells us how she felt when first diagnosed: "Shell shocked best describes it. This was 19 years ago, and I was told to go home and live my life to the fullest. I felt numb for the first few months and found it hard to believe that this had happened to someone like me -- young, fit, happily married with a young child."
Shell shocked. Yes, I think that says it.
Denise's symptoms are "Fatigue, neuropathic pain, pins and needles, electric shocks, balance issues, vertigo, constipation, badder urgency, very little hand mobility, unable to walk even short distances, weight loss."
Denise says, "I accept it and now make allowances for having MS. I'll never like having MS, but as I can't change this, I get on with my life as best I can. C'est la Vie."
Denise also has a Facebook graphic, but her mantra is: I have MS, It doesn't have me.
I met Michael on Disaboom where he writes about his life with Secondary Progressive MS. He has a way of putting a positive slant on things. Michael's quote is at the beginning of this article.
Michael tells about his feelings when first diagnosed. "At the moment that we (. . being my incredible partner and wife, Gail and me) knew what it was, we held each other and cried. We were afraid because this was a disease we knew nothing about. We only knew enough to know that our future was uncertain. But then again, whose isn't? That was on a Saturday. After we cried, after the shock or pain or reality began to sink in, we made the decision that whatever it was, we would learn about it, learn from it and be an example to our children, family and friends. I believe that is exactly what we have done. When the diagnosis arrived that Monday morning, it was really more of a confirmation of what we already knew. I have MS. Okay. Now what?"
Michael tells us "Weak legs, Bladder issues, Constipation, Erectile issues, Heat sensitivity (If I get hot or a fever, I can't move), My hands get tired quickly from typing, eating, etc., I use a wheelchair whenever there is more than very little walking to be done, I have osteoporosis (I take Boniva just like Sally Fields does), I have severe sleep apnea. (We are now treating that), I can only sit up at a desk for an hour or two before needing to lie down or use a recliner, I can only stand for seconds at a time and need a walker to hold on to for that, I get something called Lehrmittes Syndrome. Sometimes it really hurts. I can only guess that it feels like being tasered. It causes me to use expletives! It is not everyday and it doesn't last for long....so I can live with it.
I need help getting my clothes out (I still dress myself). I need help getting food and drink. I cannot get it on my own. I fall down. Sometimes twice a week and sometimes twice a day. My fine motor skills are limited. It takes me an eternity to button a shirt."
Michael paints an enviable picture: "I lead an amazing and very active life, filled with family and friends. My marriage of almost 29 years is better than ever and I love my wife more today than I did on our wedding day. We go places and do the things that others only dream of. Together we participate in anything and everything we can. We are active with our chapter of the MS Society. We have one of the biggest teams at the Greater LA Walk MS. We are active with other charities and truly feel that we make a difference in the world. Our lives are full, rich and so very worth living. Together, we are absolutely who we want to be in the world around us."
Michael says he is retired, "That is, until I get my new career going as a writer and speaker." His new career has a good start. He says he is "the Go To guy" for the Southern California MS Society, speaking several times a year.
What do these stories tell us? Progressive MS is frightening, and it can be profoundly disabling. We see similar symptoms across the MS types, but in Progressive MS the symptoms progressively worsen.
I enjoy my friends, the contributors. Each has a positive story to tell that illustrates one way to manage with this life-changing condition. By sharing with others, they help us to better understand Progressive MS.
Next time I will review questions and answers about Progressive MS. Please let me know if you have a question about Progressive MS you would like included here.
Published On: June 17, 2009