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.
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”!
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment9 Comments
You are welcome! And do not give up! I will be there for you anytime. Here is a wonderful link that offers interesting natural options to help your condition and that have been validated by science.
http://www.neurologychannel.com/multiplesclerosis/naturalmedicine.shtml
Do not hesitate to contact me! 2009 will be a great year I know it!
December 30, 2008 - 10:41pmThis Comment
Sarah: I think you are a wonderful human being and a very courageous one. I pray every day for answers to diseases such as MS and ALS. It is people like you that inspire me to stay strong and keep the faith. I am just an outside "observer" of the physical and emotional suffering you are enduring every day and the concerns you have for your family as a mom, wife and friend. I will continue to search for latest news on MS. I get them from time to time from online discussions with PALS and other victims of motor-neuro diseases. Here is a recent link on good news coming from Israel on MS http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20081116/ms_treatment_081116/20081116/
I also know that Canada is making great progress on a treatment which is on clinical trials now.
Blessings
December 29, 2008 - 10:16pmThis Comment
Virginia,
December 30, 2008 - 7:30amThank you for your encouraging comments. You may be just an "outside observer" to MS but you are a very astute one. The links that you send me are interesting, informative and very meaningful. I think that you are an amazing woman who in spite of the devastating effect that ALS has had on your life you are so concerned about someone with MS. My journey has been irreversibly altered but not in a life threating way. Please keep me posted on yours and your family's trials and joys. I am grateful for this connection.
Hugs & blessings to you
This Comment
Hi Sarah,
I posted your story on another section of our site. You can go here to see the posts and questions... https://www.empowher.com/community/share/amazing-and-inspiring-story-one-our-readers-who-living-ms#comment-14577
You might want to take a look at the posts you've had on this thread as well.
Your story is amazing and you are generating some great response and now have some questions from someone who may have MS.
Thank you for sharing your story. I'm not sure you have any idea how many women you're going to help because you felt compelled to share.
You are one amazing woman!
Big hugs,
December 28, 2008 - 10:59amMichelle
This Comment
Thank you very much for your posting. In a way your story hits home. I am the caregiver of a 53 year-old husband who until two years ago stood 6'3" weighed 220 of pure muscle and is now completely paralized with ALS. It has been a hard journey for you and your love one, I have no doubt of that. Our two kids (15 and 12) have to become my helpers caring for daddy. Not an easy task but not an impossible one either.
I have known many people with MS and in contrast with ALS, the progression of MS is slower, with ALS averaging 2-3 years of life expectancy. Depending on each persone, living longer with a motor-neuro, degenerative disease could be a curse or a blessing. We chose the get a trache and ventilation to add years to my husband's life knowing despite the fact that we knew the care would become more complex. But "buying" time means a lot to the kids and to me. I do not care how much work is to take care of him, I am blessed to have him around even if he does not say mcuh. He does not communicate verbally anymore. I miss our times alone talking and being intimate too, but we are not defeated...
I hope you do not give up. Live your life in the present. Make choices that keep you safe and minimize injury. One thing I admired about my hubby is that he used his muscles until they could not longer hold the rest of his body. Last year we got a scooter after he lost movement of the legs and could still use his arms. He enjoyed it, but soon the disease took his arms and hands too. So he is now on a special wheelchair unable to move except for his eyes and a little of his mouth. ALS and MS behave similarly with MS being slower progression and many live long lives. I hope you consider using your body's ability to move until it cannot longer do it SAFELY. If a scooter adds safety and peace of mind in your life, then get one. But if you can keep that body moving, then find time to do it too.
I have a friend who was diagnosed MS when she was 28. It has been 10 years now and two kids later and she has never stopped jogging and working out lifting light weight in the gym. She believes that while her body is not suffering from an attack, she needs to use it to full capacity while she still can. She also thinks that her work out routine has probably delayed the progression and her attacks are not as often as when she was younger.
MS is still a scientific mystery and tons of money are being spent on finding a cure. ALS patients and their families are also waiting for a miracle. I am optimistic that we will see a lot of good news next year for MS sufferers and for ALS patients like my husband. I am very active on online forums where other people with ALS and spouses chat. They are always sharing some new treatment or a suggestion, I hope you can do the same. There is always something new like a new therapy, suggestion, etc. For example, I know that Vitamin D help people with your diagnosis (that includes spending time in the sun 20"-30" everyday or taking supplements. Stay away from drinks that contain Aspartame! And maybe you want to try a technique called Emotional Freedom Technique (EFT)which is being used by many patients with MS with good results.
I wish you well and keep the faith strong!
December 24, 2008 - 3:03amThis Comment
Coach Virginia,
December 28, 2008 - 5:16pmThank you for your response to my post. Your comments both humble and inspire me. ALS is such a debilating and often times sudden interuption in an otherwise productive life. I am so very fortunate to have the use of my limbs even though they are somewhat impaired. You are correct in encouraging me to use whatever mobility I have for as long as I can. My thoughts and prayers are with you, your husband and your precious children. I hope that I never forget the blessings which have been bestowed upon me. May 2009 bring extended time together for you and all of your loved ones. Please keep me posted on your family's journey.
Sarah
This Comment
How about "Scooter Mama!"
You are so very fortunate to have such loving family members pulling together for you, and it sounds like you're a terrific role model for them. Thank you for sharing your inspiring story, and here's wishing you and your family all the happiness the holiday season can bring.
Please do stay in touch with us and let us know how you're doing.
December 23, 2008 - 7:19pmThis Comment
I absolutely love your spirit, your fight and your eloquence.
And mission accomplished: You have helped me understand multiple sclerosis in a way that a medical professional never could.
You mention your son in your post and lovingly refer to him as the "joy" of your life. You also mention that for him, the adjustment has been somewhat difficult, but hope you understand everything you've brought to him over the years. I'd also like to introduce you to Tykia Murray who is an EmpowHer.com writer.
She is an advocate for her mother who has MS. I think you'll find her perspective interesting and I encourage you to read and connect with her.
Also, was wondering if you had heard of an organization called Mobility International USA. It's a 501(c)3 non-profit organization that was co-founded in 1981 by Susan Sygall and Barbara Williams. They have a special program for women with disabilities called Loud, Proud and Passionate along with an extensive list of organizations and resources. Take a look and let me know what you think.
Thank you for taking the time to share your story and I hope to hear more from you soon.
December 23, 2008 - 4:21pmThis Comment
Tina,
December 28, 2008 - 4:55pmThank you for your encouraging words and for the links to informative websites. I really enjoyed reading about Tykia and her mom. I am continuing my investigation into other means of mobility than my two feet and your input is most helpful.
Sarah G.
This Comment