I suffer from severe migraines. When one gets full blown and I end up in the emergency room, I have to deal with general practitioners who seem to think that they know more than the specialists. When they tell me what they’re going to give me I have to tell them “Been there, done that,” and it doesn’t work. How do we as migraine sufferers get through to the GPs that we’re being seen by a specialist and we aren’t trying to intimidate them?
—Ladyhuckleberry@aol.com
I was diagnosed with multiple sclerosis (MS) on August 15, 1990. At that time I was a successful business woman in the banking industry and working full-time. I was 35 years old! My initial symptoms included gait problems and numbness on the right side of my body.
A neuropsychologist performed many exhausting tests which determined I was extremely cognitively impaired. She recommended full disability. I couldn’t imagine life without work, so we compromised and settled on part-time work with a limited scope of responsibilities.
When my employer was bought out, and the new company figured out that they were dealing with a disabled person, they quickly terminated my employment. I was one year away from retirement with full medical benefits.
I applied for Social Security Disability Insurance and was approved in February 2006. I am ambulatory, but I do use a cane at times. I continue to have gait problems. In an effort to fight the fatigue I sleep whenever necessary. I am fortunate to be married to a very understanding man. I don’t think he had any idea how much MS would affect our lives or how much it would be such a financial burden.
I have learned to live with the physical problems associated with MS. Each day is a new day and you never know from one day to the next what unusual symptom you might encounter. What I have found most difficult to deal with is the financial burden this disease has put on myself and my spouse.
—Mary Jo Hill
Omaha, NE
My husband and I are both in favor of the medicinal use of marijuana. My husband has severe peripheral neuropathy in his legs and feet. His kidneys are now only functioning at 38 percent, and his doctors have taken him off all his anti-inflammatory pain relievers because of his kidneys. The doctors don’t want to prescribe oxycotin because of all the media exposure. He doesn’t have any choices of pain relief except alcohol, which he is against because of family history of alcoholism. Marijuana would be his best alternative.
I have multiple sclerosis, but. I don’t have any insurance, and it would be a lot less expensive for my husband and me to be able to purchase marijuana for pain relief.
—Debbie Hoover
I have epilepsy, and your magazine educates, entertains, and inspires me.
When I read “A Grandmother’s Wish,” [March/April 2007] my heart swelled quite a bit. Can he be helped? When I worked as a nurse, I had an autistic patient. No matter what I did, I couldn’t get a response out of him. He’d just sit or stand there, smiling. Now I want to send Martha some gum for Zev!
—Liz Cole
Georgetown, IL
My 9-year-old son, Jacob, first started having seizures in the hospital nursery when he was 1 day old. He had surgery to remove a blood clot on his right frontal lobe and was later diagnosed with traumatic brain injury. There is not much anyone can tell us.
We found your publication at our neurologist’s office and were fascinated. In the Jan/Feb 2007 issue, there is an article on Nicky Gottlieb, who has Asperger’s, and Jacob was diagnosed with this same syndrome when he was 7. It was touching to read the article.
Although I go each day wondering what happened to my baby, I realize that this is the way of life for our family and that it was a miracle he survived and is still with us today, which is a blessing. I look forward to receiving your publication each time.
—Cheryl Whitten
Enfield, ME
I’m a longtime stroke survivor, so I was delighted to read your article “Virtual Support” [March/April 2007].
I’ve gotten the same kind of support from MGH’s BrainTalk at the Stroke Forum. I was very disappointed when I checked your Resource Central under stroke that you didn’t include the Stroke Forum.
Recently, the BrainTalk website had a major meltdown and lost its archives. Now, someone sitting down at a computer to get information about the stroke a friend or family member has had would find it very difficult to find the BrainTalk Stroke Forum unless they already knew the magic words BrainTalk.
I think you have a very fine publication. Please add BrainTalk to your Resource Central.
—Moira Cosgrove
I began having seizures at age 35, 13 years ago. I finally experienced a tonic clonic seizure, at which time I was diagnosed with epilepsy. I was thrilled to have a diagnosis that I believed was accurate. I started on a medication regime that worked well to reduce the number of monthly seizures, but it left me even more depressed and feeling suicidal.
I had 2 cats at the time, Zoi and Lil. They were the reason I believe I never went down the path of suicide—I couldn’t leave them homeless and wondering why I’d left them. Zoi got into the habit of lying on my chest in bed while I was crying and licking the tears off my face; Lil would huddle tight under my arm and purr. They were there for me and I knew I had to stay around from them.
Zoi and Lil saved my life. They’re both 15 years old this year and are still responsive when they sense I’m down. Animals are an unbelievable source of empathy, support, love, and kindness, and they deserve to be appreciated every day for what they add to our lives.
—Judy Dancer
Oregon
My eyes welled up with tears when I read your story on therapy dogs. I want to tell you about my “Duchess of Cardinal”: she is a red, smooth-haired, miniature dachshund, and she turned 3 years old on April 14, 2007.
My mother, who lived with us for the last three years of her life, would often say that she would probably not have gotten up during the day if it weren’t for Duchess wanting to go outside or climbing in her lap to be petted.
After my mom’s death I became very depressed and cried a lot. Duchess seemed to sense this and just know when I was sad. She really had an impact on me and gave me a reason to get up and go outside.
I have neuropathy, osteoarthritis, reactive arthritis, and seven herniated discs. I walk with a cane now and am unable to work. Duchess will often lick me around my joints as if she senses that they are painful. She is always curled up on my lap or following along beside me.
I know without a doubt the kind of impact a dog such as her can have on a person: they give love unconditionally. I love my little baby and can truly say I am a dog person now! I will be heartbroken should anything ever happen to her.
—Dena R. Di Filippo
Hamilton, MS
After reading the article on pet therapy in your magazine the other day,
I couldn’t help but remember how my dogs have touched me along the way.
When I was younger—not that I’m old at forty-five—
I would always lean on my dog when my life took a dive.
On those days that I was sad about this or about that
My dog would step up to the plate with her unconditional loving “bat.”
As the tears rolled down my cheeks and stained what I was wearing
She never ran away from me and she never stopped caring.
With a neurological condition—“epilepsy” is the formal name—
It didn’t matter to Ginger or Spice, they would always love me the same.
The dog I have today (K.C. is his name and Irish Setter is his kind),
Although bigger than the other dogs I’ve had, they all share the same mind.
I go to him and hug him, and he shows concern when he senses my mood.
He provides me with solace on those days when I feel like I’m becoming unglued.
I still get frustrated, trying to make these seizures go away forever
But with K.C. by my side I won’t give up or say the word “never.”
I know firsthand the benefits of a dog’s love that never ceases to exist
I also know how much better I’ve always felt whenever I had been canine kissed!
—Debbie Wiesner
