Background Information On Nicki
Niki Fry is a 70 year old woman who is close friends with my (Zach) mother. She works for Whichert realtors just like my mom. She was diagnosed with Lou Gehrig's disease at age 60. She has lived with it ever since. She happens to have an extremely rare case of it. The disease is extremely slow moving. That is why she has lived so long after diagnosis. She has gone to multiple hospitals and medical centers to test why her case is so slow moving. She and other doctors believe it's from riding her horse that has kept her very much alive for all this time. Apparently, riding a horse takes a lot of strength, and she has built up her muscles over time. She thinks her extra muscles have helped the cancer slow down. She is a dedicated horse rider. She probably rides it 4 or 5 times a week. That is why she is so strong. Below are the questions I asked her.
How long have you had cancer?
I have had cancer for 15 years. It has challenged me however, I am trying to rise above the challenge and inspire others to never give up hope and keep on fighting.
What do you suggest people with ALS to do after first diagnosis?
First of all, do everything you can for your health. Improve your diet, quit smoking, take up yoga and/or meditation, practice positive visualization, get plenty of sleep, and work with your doctor to develop your own regimen of helpful vitamins. Every little effort will help you, both physically and mentally. For example, I ride my horse almost every day. That is how I stay in shape and that is why I am still alive after all these years of living with it.
Be compassionate to yourself. If you are like me, your first reaction to being told you may have ALS is shock and fear. We all go through wild emotional swings when we hear such dreadful news. Allow yourself to go through denial, grief, anger, and whatever else you feel without criticizing yourself for it. It’s natural and necessary for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses. This will pass, and being gentle with yourself is a big help.
Reach out to family and friends. Many people may want to help and not know how. Talking openly to a family member or friend about your situation will help both of you cope. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver. Also, this allows family and friends to get involved.
Take charge of your treatment. Pick your health care providers carefully. Remember, they work for you. Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If they don’t patiently and respectfully answer (or research) all of your questions, fire them and find someone else. Don’t be passive about your treatment options. You are always in charge.
Do things you have always wanted to do. Take that trip to Europe, spend more time with your family, go skydiving, write a book, or raft the Grand Canyon. Whatever it is, go ahead and do it. In a few months, you may no longer be able to do these activities. I ended up going to Israel and staying there for 2 months. But, it turns out I am still alive.
There are many other things that you can do to help cope with you diagnosis but those were just some examples.
Be compassionate to yourself. If you are like me, your first reaction to being told you may have ALS is shock and fear. We all go through wild emotional swings when we hear such dreadful news. Allow yourself to go through denial, grief, anger, and whatever else you feel without criticizing yourself for it. It’s natural and necessary for you to experience powerful emotions. Many feelings will arise again and again as ALS progresses. This will pass, and being gentle with yourself is a big help.
Reach out to family and friends. Many people may want to help and not know how. Talking openly to a family member or friend about your situation will help both of you cope. Ask for assistance with preparing meals, running errands, doing household chores, or ask to be taken to the movies. Building a support network will help you and your primary caregiver. Also, this allows family and friends to get involved.
Take charge of your treatment. Pick your health care providers carefully. Remember, they work for you. Talk to your primary care provider and your neurologist about any vitamins and supplements you may want to take. Ask lots of questions. If they don’t patiently and respectfully answer (or research) all of your questions, fire them and find someone else. Don’t be passive about your treatment options. You are always in charge.
Do things you have always wanted to do. Take that trip to Europe, spend more time with your family, go skydiving, write a book, or raft the Grand Canyon. Whatever it is, go ahead and do it. In a few months, you may no longer be able to do these activities. I ended up going to Israel and staying there for 2 months. But, it turns out I am still alive.
There are many other things that you can do to help cope with you diagnosis but those were just some examples.
Which Symptoms did you notice first?
When I first got the diagnosis, I noticed many symptoms of ALS. My eyes were twitching uncontrollably. I also was dropping things. I even remember during the week within the diagnosis. I dropped my folders with all my clients information in it, I dropped a glass vase that shattered into pieces and dropped my salad all over the office floor. I also had trouble riding my horse the first few weeks after my diagnosis. I don't know if that was a mental thing or it actually had to do with my ALS but anyways, I did have these problems. Lastly, I had trouble speaking. I couldn't say what I wanted to say without stuttering. I think that was a symptom.
What did your general doctor say to do?
My general doctor sent me to a specialist who specializes in ALS. He said to go immediately so I on't get sick.
During your first visit to the doctor, what specific tests did he do?
Aperently ALS is a very hard test to diagnose. One must go through many tests before their diagnosis. Some tests are
- electrodiagnostic tests including electromyography and nerve conduction velocity.
-Blood and Urine
-Muscles and nerves biopsy
- electrodiagnostic tests including electromyography and nerve conduction velocity.
-Blood and Urine
-Muscles and nerves biopsy
During your second visit to the doctor, what was his diagnosis? How did he want to treat the disease?
The doctor diagnosed me with ALS. His plan of action to treat it consisted of giving me riluzol, physical therapy, and other medicines used for ALS treatment.
What was you plan of action used to recover from ALS?
His plan of action to treat it consisted of giving me riluzol, physical therapy, and other medicines used for ALS treatment.
What was the longterm plan to help recover?
He told me to keep riding my horse because it is increasing my muscle, go to physical therapy take pills to help me recover, and just live my life to the fullest because you never know how long I will live.