MEET JOY... REGULAR PEOPLE ARE EFFECTED
Meet my mom, Joy. Like us, she lives here in Lynchburg, VA. She is a stay at home mom and home maker. Formerly she was a foster mother for about 10 years, but after adopting my sister Karlee about years ago they "retired" from foster parenting.
Mom is about to be 54 years old. She has been married to dad for over 30 years. She has 6 children; Zac, Missy, Beth, Karlee, Joe and Mark and 26 former foster children.
dad, mom, sons Joe and Mark, son-in law Marko, Daughter Beth and Grandkids Anthony and Jayna- May 2011
DIAGNOSISAlthough formally diagnosed about 18 months ago, mom has been having symptoms for about 15 years that we can now link to MS since getting the definite diagnosis. Mom's first unknown symptom was her hands feeling like they were wrapped with yarn, not numb but rather restrained or tingly even. Her doctor at the time tested her for diabetes but never gave her any explanations. Her 1st diagnosed symptom was diagnosed about 8-9 years ago and is a common MS link. (although the link is unknown until the big diagnosis. She had/has
Optic Neuritis:
Optic neuritis is the inflammation of the optic nerve, the nerve that transmits light and visual images to the brain, and is responsible for vision.
According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. Frequently, it's the first symptom of the disease. Although having optic neuritis is very suggestive of MS, it does not mean that a person has or will get MS.
3-4 years ago she did a church weight lo9ss group but if not really concentrating on her footing she'd trip/almost fall/ loose her balance.
What led her to a larger diagnosis beyond just the optic neuritis and "clumsiness" was when she started having rather major balance issues, fatigue and obvious weakness about 2.5 years ago. She was more fatigued than usual, but that is easy to blame on "being in the 50plus" category. Howevery the rubbery feeling, lazy legs that would make her loose her balance, sometimes falling and made walking difficult were not so easily diagnosed, nor was the rather extreme (sudden- in a matter of 3 months) weakness.
Possibly, due to dad and I doing the MS Bike ride, mom came across some National MS writing about some symptoms and links. She had found the missing piece to all her weird symptoms over the last 15 years. She took it to her family doctor, who previously was unable to explain her issues and gave her a referral to a neurologist. She had an MRI done. She had two small brain legions and a larger legion on her neck. She had MS.
Mom Christmas Eve 2010was told she has remitting/relapsing MS. However she is thinking maybe she has Progressive as she is yet to have a "break" which is typically what you would expect with relapsing MS; times with several (often more severe) symptoms and then times without many symptoms. Since getting her diagnosis, she has had several falls. However one in her backyard in Feb 2011 takes the cake and has caused her to loose more mobility, this time in her arm. She has hurt her rotator cuff in her shoulder and now has very liminited arm movement for that arm. She is in Physical therapy once a week to attempt to regain that arms strength and mobility, so far with very limited results. In May 2011 she had a shoulder MRI and Xrays done, but is still waiting the full results and treatment. Unfortunately falls have become a part of life now.
SYMPTOMS
Currently moms main three issues are severe weakness, fatigue and lack of balance. In addition she has the Optic Neuritis, bowel and bladder issues- which she found out are also common MS issues, and lazy legs.
Christmas Day fun with Grandson AnthonyJoy is currently is a trial study. She drives an hour away every month to take part in this drug test trial. Every three months she gets a brain MRI. It is a year long study that will end in August. At this point we do not know if mom's medicine is "the real thing" or just a saline/water solution. Half the patients in this study are given "fake" meds and half are given the real thing. Although unknown, it is thought she has the real thing due to a reaction she had one night. Every other day mom gets an injection in either her arm, hip or belly. They rotate spots. In August she will find out which "med" she had and the results and effects, if it helped her improve, if she got worse. Then she will continue to receive her meds free until the FDA approves it, at least one year. The side effects of this medicine include lots of bruising, bumps and lumps.
Anthony and Grandma on Anthony's 7th birthday he got a matching shirt: Feb 2011PI did not ask mom specifically what her feelings were on the emotional side of MS, however I see her somewhat fustrated with this disease. It's hard to go from being very independent and a hands on worker (she's queen of do it your self home improvements) to slowly loosing the ability to do much of the activities she has enjoyed. She now has to walk very slowly and concentrate on each step as to not fall and to maintain her balance. It's fustrating to remember how much strength and and care-freeness you had and watch MS slowly steal it from you. We used to pay mom to clean for us at one point now cleaning a room in her house wears her out, She used to watch her grandkids several hours a day, now we try to limit it to no more than a few as she is weaker and more tired. Even if/when they behave well, it is a lot on her now. The other emotional side I see is one she hasn't fully dealt with yet, but is preparing to. This spring and summer the have/are making their home fully handicap friendly. They have installed very sturdy hand rails for the front steps as she struggles with those and then they have added a paved, level, entrance around back. She has a walker she can use as needed. Some of this is not fully needed yet, but it is better to prepare now before it is needed and not there.
Christmas Day 2011... moms in the right hand corner :-)
CAN YOU HELP US FIND A CURE?IN honor of Joy, and other MS victims like her, will you please consider making a donation to the National MS Society. I am specifically asking you support our bike team as we raise awareness about MS, and raise funds to find a cure and erase MS. If you are able to donate please visit our MS 150
bike ride page
We are riding in a 150 mile bicycle ride to raise awareness and funds for those struggling with MS. Thank you for your financial support as well as for your thoughts and prayers for us as we train for this bike ride and for those struggling each day with MS.
