Stories Needed - Multiple Sclerosis Fundraising

Hi Julie,

I was trying to send you an e-mail but the page bounces back to the main MS page. Can you e-mail me, or pass on your e-mail address? I need to get in contact with you.

Thanks.

My Life with MS

Could a motorized scooter be the answer for me?

This question must sound ridiculous to most people. However, most people are not traveling the same road that I and thousands of others like me are traveling. At the age of 59 I was on an exciting path as a wife and mother, an active church and community volunteer, working in a career which defined who I was and looking forward to a retirement filled with traveling in Europe and the USA. However, my path took an unexpected detour which led to a dead end.
Multiple sclerosis put the brakes on my planned path quite suddenly. For those who don’t know much about MS, the disease causes an otherwise healthy human being to lose the ability to walk as far as he or she desires without tripping on their own feet and falling, to see clearly without having to close one eye in order to focus, to use their fingers without having them close up or start trembling, to use their mind without forgetting how to be creative, make wise decisions and choices or to spell a commonly used word, to be able to make it to the bathroom before it is too late, to be able to walk up and down a flight of stairs quickly and safely, to be able to cook a meal or clean a room without becoming so fatigued that it may take up to an hour to recover, to take a hot bath or shower and be able to walk away on their own or to fill out a form and sign their name legibly.
All of these changes in my life resulted in the loss of my stubborn independence and of the career that defined who I am. Fortunately I have not lost the most important parts of my life – my husband, my son and my sister. However, our relationships have been irreversibly altered.
My husband’s daily life has been affected the most but he has risen to the occasion by doing all the driving and shopping and most of the food prep and clean up. Intimacy is unfortunately an event in our past. MS decreases ones libido and makes what used to be enjoyable now painful. His role has unfairly changed from head of the household deserving of wifely support to that of caregiver. Because of his desire for me to be happy and fulfilled, my son has had a difficult time accepting the changes in my daily living habits. I don’t have a stronger supporter but unfortunately his role has changed from a son who needs his mother’s counsel to a parent as he has become the mentor and advisor. He is the joy of my life and I am in awe of his wisdom. My sister has been as always a source of wonderful support. She is older than I am, but I have always been the leader due to the differences in our styles and personalities and my obnoxious habit of wanting to control every situation. Now she is finally realizing her value and immense worth as the roles have changed.
Now that the background has been laid out, it’s on to the reason for my question about a scooter. The devastating disease known as multiple sclerosis has many different faces. For this reason and because there was very little published about MS until 15-20 years ago, few people know or understand how it affects one’s life. I know that people who say to me, “You don’t look disabled, you look great”, are well meaning. Such comments are well-intentioned; however, they do not make feel any better. I actually feel that they are questioning my right to disability and thinking that I could do more if I would only change my attitude and try harder.
Many of the effects of MS which cause my daily problems are known as “silent symptoms”. They are not visible and remain quiet to people who are uninformed about the ravages of this chronic illness. If someone sees me using a cane they do not realize that I can only walk a short distance with the cane before my right foot drops and I stumble and fall. I only use the cane when I go outside the house so I do often have falls at home. It is difficult to accomplish anything meaningful with a cane in your hand. My falls away from home have left me with staples in my head a number of times and torn ligaments in my knees. If I were on a motorized scooter these falls could have been avoided, but remember, “You don’t look disabled, you look great” leaves both me and others wondering if I really need such assistance. The Social Security Administration has determined that I am not disabled enough to receive benefits and that I could be working in some capacity. I have yet to discover what I can do since I do not drive more than a few miles from home only in daylight and certainly not in bad weather, that I am unable to function on my own two feet or to type other than by the hunt and peck mode. However; I am fortunate to be receiving long term disability which I am entitled to because both I and my employer for thirty years paid the premiums. Many of my fellow MS patients are not nearly so fortunate.
Other than my family members and doctors no one knows about my poor bathroom habits. Only my husband watches me struggle to type on the computer or write anything and sign my name due to my trembling hands. I was near to tears when we recently closed on our home because of the pain I felt from having to sign my name so many times. No one other than the two of us noticed the difficulty I was having.
In spite of all of this, there have been many blessings since I was diagnosed with MS. The power of love is something I now truly understand. Such as the love of a husband who is definitely living up to the vows he took standing by his bride to be there “in sickness and in health”; the love of a son who rode many miles on his bicycle in honor of his mom to raise thousands of dollars in “The Fight to End MS”; the unselfish love of a sibling who drove a couple of hours from her home on several occasions in support of her sister, helping her to unpack and get her home in order; and the deep and abiding love of my Lord who has a plan for my life and is with me on this journey.
My purpose in revealing these personal, embarrassing and painful facts is not to defend my right to be classified as disabled but to inform those who know little about MS and to create an understanding for all of us who have this life altering disease. But I haven’t answered my original question. The decision is in my hands to brave the uncertain world of accepting the reality of my disability and allowing all I come in contact with to see me as a disabled woman. I want everyone to know that I am a brave lady who accepts her fate and is making the best of her situation while learning and growing in the process. One of the truest lessons I have learned is from a dear friend – “when you stop growing you start dying”. This brave lady is not ready for that!
Who knows? Perhaps happiness is the freedom to be independent and to ride a motorized scooter to and from the store, around the block, to and from the scenic marsh or through the streets of London? I think I just might give it a try. My mantra could be “Motor Cycling Island Mama”!

Hi Julie:
My name is Robert Groth, diagnosed with MS in 1989. I’m very interested in helping you. I’m very active with MS and I’m a writer/author at my blog. You’ll find out more information about me and my bio at http://www.conquerms.com Please take a look and feel free to contact me at cgroth977@gmail.com
Robert Groth

Hello Julie:
My name is Robert Groth, diagnosed with MS in 1989. I’m very active with MS, you’ll find me at my blog at http://www.conquerms.com Please read my bio and you’ll get a good feel as to who I am. I would love to help you out.
Robert Groth

Julie:

Fundraising for what? I was diagnosed with MS four years ago and have discovered that MS (a 1 in 1,000 disease with no known CURE means NOTHING to the majority.

Only when they see the bills for MRI’s affecting their insurance premiums do they care…most people think of some hypochondriac who THINKS they might have MS, who can’t even afford MRI #1 (which REAL MS-affected families end up paying for when the MS-sufferer’s health-insurance carrier drops them!)

mattergy

I was diagnosed in 2002. Very active. Getting ready to start school next week!

Check out my blog if your interested. ransomedtoride.blogspot.com

after years of being told to pull myself together by medics,in 2005 i was diagnosed with MS.I had lost the use of my right foot kept tripping up,had stitches in my head,my knee, burnt myself because of extreme tiredness even lifting a kettle exhausted me,could’nt spell,find the right word,had severe memory problems,headaches,Loss of feeling/numbness in hands feet,tremors etc etc I am appaulled at the treatment of MS sufferers,I have to fight for every little bit of help i need,including MRI scans DLA.I think not enough is done for people with MS.I do not sit around feeling sorry for myself,i am a writer and p/t student at university.I also did an abseil last year which beat me for days after but I was determined to do.At 46 I am not giving up on my life but a little help would go a long way.I get told ‘you look well’ like i am putting on my illness,that hurts more than anything,i use a cane and have a mobility scooter bought and paid for out my own pocket,i worked for 30 yrs so feel i am entitled to help.luckily i have a great husband and son of 18 who help Thank goodness for them where on earth would i be without them…..

Urge your participants to visit nursing homes, MS support groups, home care agencies, and transportation services that cater to the needs of the disabled to learn as much as possible about the many different types of MS and he disproportionate number of younger people using their services because of a diagnosis of MS. Seeing is believing!

Julie,

These are truly moving…thank you all for sharing your stories. I work for the MS Society and I’m here to create a world free of MS!

Just have them all think how much they look forward to playing with their children, running, dancing, climbing. And then have them imagine the look on their kids faces when their parent can’t run with them. Can’t play tag in the yard, can’t dance with them at their wedding. Then tell them that thought is in everyones heads who has MS. Will today be the day I can’t ……?

Hi, my name is Melba, I was diagnosed with MS in April 2007 but I’ve been suffering from that disease since 1993 when I had my first symptom. Corrently I’m out of work, MS is progessing thus very hard to move as I did years ago. Still, nine or ten years ago I was able to run a bike and even jog–which I loved it very much- Then one day to the next could not run without falling down and much less riding a bike because I fell constantly when I try–my body lost coordination and muscle strengh and the exhaution made it impossible what. I loved doing so much all those things, my dream was always be in shape –one day the dream died!–from one day to the next I was not able to do what I always enjoy and was good at it–maybe my story–like many other story of MS patients will inspired those people able to still do all of these sports as a way to do it in the name of those that CAN’T anymore because of MS– Take a name of a person that suffer form MS that can’t even jog or ride a bike and show your support for them– That is my idea– I so much will love do them– I CAN’T.
Melba

Hey Julie,
My name is Sarah, and I was diagnosed with MS when I was 16. I was an avid basketball player in highschool, and finished out my senior year! It was amazing! I guess I would just say that attitude is everything. And even though you are left with something aweful… you still have the world at your finger tips. You may be immobile, or blind, or flat in bed. However… what you do with that, those challenges and trials, is what makes you better. So I have MS. I’m 22 now. Is my life over? No way jose!!! It is beginning. I sure do have wrotten days. I sure do feel like I’m always dragging. Who doesn’t? I know people don’t like to hear this… because I didn’t like to hear it for a long time… but then it hit me like a ton of bricks… things could be worse. I know for me the worse is right now. But I’m not dying. I’m not bald, or going through chemo. I can read, and I can smile, and I can look at what I C*A*N do. That’s what I learned to do. It took a while. But I had to focus on what I could do. Life is good.

Hi Julie,
Talking about the hard economic times. A good majority of us (people with ms) are unable to work, (me being one). Struggling to pay bills and buy groceries in a one income family of four is tough! We need a cure and the only way is through the generosity of others. Good luck Julie and keep up the great work you are doing for all of us!

My friend Alec is a New Zealander who was diagnosed with MS on his 34th birthday. I’d certainly call the dignity with which he’s handled his situation “inspirational”. He’s launched a website to share his poetry, writing and thoughts about dealing with MS – which can be found at; http://www.alecthefish.com

Here’s a section from his homepage;

I’ve always loved a challenge…

On the 8th of December 2004 I received the positive diagnosis of Primary Progressive Multiple Sclerosis – and began the greatest ride of my life. If you’re looking for a challenge, there are few better than PPMS. Ever since the day of my diagnosis I haven’t stopped laughing. Sure, there have been times when I felt a bit down, but never because of the MS. The most troubling times have been bought on by the system I have been thrown into. I last worked full-time in April 2005 and ever since have been on an invalids benefit. Not a lot of fun to be had on the benefit. My income dropped instantly by about 75% and for some reason my debts and bills seemed to stay pretty much constant. But that’s all I’ll say about that…

I walk with the aid of two elbow crutches. They give me the ability to walk and I can almost carry myself on them. It makes a walk around town a real workout when every step is a push-up. I still try and get into the hills and have a few friends who take me to the open spaces so I can live the life I love. And that’s the clincher. I love my life, maybe more than I ever did, and I was always a pretty happy guy. So I’ve got an untreatable incurable disease. So what… it’s not going to kill me. MS is not generally known as fatal.

It seems a long way from my old life of working on farms, factory labouring, driving trucks and tractors. I also did a stint on the West Australian gold fields. But now I’ve begun the next challenge of my life and working career… Not that I ever really had a career, just a lot of different jobs. It amazes me how much my life and outlook has changed. Thankfully, my days are still quite full as I am president of the local MS society, am a member of the DPA (disabled persons’ assembly) and do volunteer work.

I don’t do as much writing as I once did, but words fill my mind daily. So I’ve created a website to share some of my written thoughts and poems.

This is MY story, at least part of it. I am Alec Fisher, and I have Multiple Sclerosis. Welcome to my world…

http://www.alecthefish.com

Julie,

Se the video found towards the bottom of my ms blog: http://wwwmsviewsandrelatednews.blogspot.com/ – entitled : “The Show MUST Go On”
This vidoe, if written into a dialogue, could be award winning…

Best Regards,
Stuart Schlossman of MS Views and News

I have been diagnosed with MS for 10 years. I had NO IDEA how fortunate I was to have great insurance when I was working full-time. However, once I had kids and quit work, I also lost insurance. I was unable to get on my husband’s insurance because of MS. With the cost of most MS medications being about $1700 a month, who can afford that? I was fortunate enough to get approved through NORD (National Organization for Rare Disorders) to get my medication paid for….but there are so many others who can’t! Some people with MS have to choose if they are going to pay their rent or be on medication! That’s just not right. Thank you for fighting the fight for those who can’t ! God bless you and good luck!

Hi Julie,

Just wanted to share with you of what we do in our suppor t group for MS. One of my MSer friends came up with an idea of making a MS suit which consists: 1.wearing a shirt with buttons and wearing work gloves and attempt to button up shirt 2. wear boot/air cast on both ankle/feet and attempt to walk at a normal speed and 3. while wearing the boots rush to the restroom as bladder issues are a problem and time yourself or the one participating to wear this MS suit and count to 30 and have a distance to go from here to there and not succeeding in time to make it on time so all of a sudden you get squirted in your private part because “guess what you had an accident” and many family members, caregivers and friends attempted this technique and then they could really understand what we MSers have to go through. Hope you can try it and be successful on your fundraising.

I had the first symptom in 1981 – my life was defined as print journalist. When that was takent away I didfree-lance writing and when I couldn’t do that anymore, I turend to fiction. My first novel, A SUNDOG MOMENT, A NOVEL OF HOPE deals with the changes in a family facing a chronic illness, told from all sides but also showing how humor and hope can change perspectives and lives.

When I lost my career I was bitter, but there’s only so much you can do with bitterness – it gets boring. Life changes for everyone but for those who’s health is always on the edge, you look for those moments of hope, sundog moments, to pull you through. And when you can finally laugh and make jokes about at what’s happening, it drains the fear away. I’m not clumsy, I’m gravity impaired. And whenever I see a person using a cane as I do, I sidle up to them and announce, “We have to raise some cane together!”

The MS Society has certainly added to our hope, as has the Myelin Repair Foundation – so much more has been discovered since the days of the early 1980s when nothing in the brochures changed exept the dates.

Good luck!

sharon

To Sarah Gillespie (regarding your question),
Hi, my dad was diagnosed with MS about 25 years ago. He has been so stubbornly insistent on how MS wasn’t going to keep him from walking. He still walks, using two canes. He’s fallen many, many times. We all are very supportive and proud of him and are amazed at all the things he can still do. However, this attitude of his to keep walking has somewhat backfired. He never wanted to be in a wheelchair or scooter, but he now spends a lot of his time in the house. More and more of that time is being spent sitting on the couch because he is too tired and unable to walk throughout the house. Don’t get me wrong, he still does things at times that even I am unable to do. But, we used to go to yard sales, flea markets, home shows, amusement parks, etc together as a family. We are unable to do these things together now because he will not use a scooter. This attitude of his is causing him to miss out on life. We have been working on trying to get him to realize this. In response to your question, when you are ready, please get a scooter. Don’t miss out on even more of the things in life that you love. I’m sure your family members worry about you falling (as we do with my dad). I guess coming from the position of having a parent with MS, I’d rather know that the parent were as safe as possible also. And getting a scooter doesn’t have to mean that you are confined to it. Just use it to make your life easier. I watch my dad and think that if he’d use one that maybe he’d conserve a little energy to be able to do other things later. I hope I’m not rambling, and I do not know what it is like to be in your position and have to think about these things…but I do know what it is like to be in your family members’ positions. And I’m sure it might seem like a huge step for you, but I’m sure they’ll support you all the way. Best wishes to you, Jenny.

Has MS changed my life? You bet! But not for the worst. I have learned to live each day as a treasure. I have learned to love my children and husband more fully. I have learn that taking care of myself is a good thing. I have learned to not put off exploring my talents and ambitions until I retire from teaching. I have learned to respect others who face disease. I have learned how to love and respect myself and face each day with a smile! I have learned that I don’t have to “die” from MS, but I can soar to new heights living with MS.

So to all others who face each day, wondering if it is your last day healthy, embrase it, treasure it, and smile through it. Because, MS can shape you into the person you are intended to be.

Hi Julie,

You need to meet this family who pedaled cross country this summer on two tandem-bikes. The mother has MS and they wanted to do this while she was still able. Near the end of the ride, approaching Portland, Maine, she experienced a relapse of her MS which shortened their ride just a little bit.

Shut Up and Pedal!

I followed their story along the way as documented in their blog. And the story went national on NPR in December. Very inspirational.

If you ever need help with anything else, please feel free to contact me through my blog at Brass and Ivory.
Lisa

Hi Julie. My name is Emily Bailey. I am 21 years old and currently serving in the United States Air Force. My mother, Barbara Bailey was diagnosed with Multiple Sclerois before I was born. When she became pregnant, the doctors urged her to get an abortion. She said absolutly not. She gradually went from walking fine, to a cain, then a walker, and finally a wheel chair. My father left her and his kids at her lowest point. The point where she needed him the most. I have three sisters,with the closest one to me is ten years older. I had to grow up quickly. The roles were now reversed. I was now the mother, and had a lot of responsibility. Responsible for the cooking, cleaning, her baths, and her happiness. I was always worried when i would go to school, hoping she didnt fall again today when i wasnt there. She had fallen before to where it broke her ribs. It seems as if she would take one step forward, and fall three steps back.With the help of God, this never stopped my mother. She is the most beautiful, amazing, happiest woman i know. If she, a woman that once could play the piano beautifully that can’t even write her own name anymore, can keep a smile on her face, I know anyone can. She is what inspires me to do what I do, fight for my country. She keeps me motivated from day to day. I pray one day, maybe one day…i can grow up to be like her.

I have had M.S. since 1989 and I have a big story I can tell.

my son was diagnosed in 2006 and could not get the medicine he needed. He took it for 6 months and went into remission.
Then the money ran out. he had no health care , he was 21 . he is now 23 and is dying. had he been able to get the medicine eary on, he would not has gotten to this stage. A national health care system in the US is whats needed. not more useless fundraising to line the pockets of the FDA, government and drug manufacturers

why raise more money- 4 who- not us- must -b-4-their raises

Hi

My name is Theo Johnson and my mom has MS.I’ve been trying to research more about MS. Can u E-mail me or call me at 973-424-7747?

UPDATE my son Daniel who I posted about here, died on July 5th 2009 at the age of 23 from MS.