“Friends can help each other. A true friend is someone who lets you have total freedom to be yourself.” ~ Jim Morrison
Just like most people with physical challenges, I seem to always be adapting. Last year, I started having trouble using my hands. My fine motor skills had declined.
Since then, most days I can’t comb my hair. I told my hairdresser and she recommended I get low maintenance braids. I took her suggestion. And although it cost more money, it is so much easier for me to manage.
It took me a while to piece together an interim solution for my diminished hand dexterity. And I struggled with the reality of losing such a basic skill.
Every thought, after facing that truth, was controlled by the fear of disease advancement. I began listing in my head the things, people and abilities I’ve lost over the years. And all that heartache generated tears upon tears while pushing me to the edge of sadness. By the time I was finished with my inventory of pain, I felt broken and depressed. It was like going through the loss of those relationships all over again.
My sweetness for life was slowly being replaced with bitterness and resentment. The oppressive attitude created by my anxiety began to take over my psyche. It seemed like I was killing myself with my own thoughts.
Luckily, that wasn’t the first time I had to deal with those types of emotions. So I instantly knew what to do to make myself feel better. I needed to talk to individuals who understood. The ones who fail at common everyday task but somehow are able to focus their minds on positive achievements. I wanted conversations with folks who would accept me despite my flaws. Those people who knew my story by heart because we’ve lived the same moments.
I needed help from the MS community.
It’s hard to not dwell on the past. It’s even harder to move forward while living with a chronic disease. Sometimes the love from others is the only thing that keeps me held together. And fortunately in the mist of my sadness, I didn’t completely fall apart. I didn’t come undone. I was inspired by everyone who is going through distress but still find the strength to persist and thrive.
Guided by my friends, I found the help I needed. And after a few days of communication and encouragement, I finally made it to the other side of sadness.
It is very hard to get off the track of listing all the things we’ve lost, and watching for new losses. I am encouraged to read stories like yours of fellow MS-ers who find ways to adapt. Your hair looks beautiful., by the way. I wish I had enough hair left to worry about!
The National MS Society supports the development of medications that are immune suppressants…because that is the only direction they believe has the answers to MS. They want to treat the disease…not cure I, not because they do not want to, but because they don’t know how. I want to find the cause and I believe the direction with the most promise is the direction being initiated by Dr. Raymond Damadian, original inventor of the MRI, and Dr. Scott Rosa. They believe MS as well as other neuro degenerative diseases, including Parkinson’s, Alzheimer’s, ALS and child hood autism originate with head and/or neck trauma. This causes a misalignment in the cervical spine and the blockage of CSF (cerebral spinal fluid) flow. When the CSF flow is blocked, it backs up in the ventricles in the brain, where it is produced, and creates leakage of CSF from the ventricles. Depending on where it leaks, that is where lesions form. If the leakage goes to the optic nerves, it creates optic neuritis, for instance. These doctors are focused on the place where the spinal cord connects to the brain and so much of the function of the human body is controlled or affected in this area, the cranial cervical junction. My first question is always, have you ever experienced head and/or neck trauma? Many people with MS share this history. It can happen in a car accident, sports injury, fall or childbirth when delivered with forceps, for instance. It can take weeks, months or years to present symptoms that get diagnosed as MS. Why have no other researchers observed this connection? It is because they cannot see the CSF, or blockage or leakage because it doesn’t image, much like air or water. Dr. Damadian also developed the only Upright Multi-position MRI. He was doing a CSF flow study with advanced software and hardware, when he observed a patient with MS had normal CSF pressure in the brain in the recumbent position, but it more than doubled normal when scanned upright. (in normal people, pressure remained the same) Why? That is when he observed the blockage of CSF flow in the cervical spine. He quickly scanned an additional 7 patients with MS and observed the same phenomenon. That lead to his first observational paper. Being able to see CSF and movement of CSF is a major breakthrough. Being able to calculate CSF flow rates and intracranial pressure is another breakthrough. Being able to do this in the weight bearing position, is another breakthrough. And all this is done non invasively with no enhancers. No other scanner, no matter how powerful, can see CSF movement. I was fortunate enough to know Dr. Damadian, and was invited to join his study. My scans showed I had scoliosis in my cervical spine, four blockage points in my CSF flow, my atlas disc was diagonal, and my C2 was rotated 18 degrees. I was leaking CSF from all four ventricles and the leakage lead right to my lesions. I had had MS 29 years at the time and had crossed into SPMS for 9 years. Dr. Rosa studied my scans, and performed atlas alignment with the atlas orthogonal instrument (using IGAT, his own patented software) with image guided accuracy. I felt nothing, and yet, my cervical spine was perfectly aligned. I wouldn’t have believed it if I hadn’t seen the scans myself. More importantly, I got my eyesight back immediately. The feeling in my abdomen came back over the next year along with the feeling in my fingers. I could drive again, put in my own earrings, read books, and I no longer get bladder infections. These doctors have given me a much better quality of life with no medication. I have not regressed with any of the regained abilities. It has been over 7 years since I joined this study. When the cervical spine is aligned, it opens the CSF flow. When the CSF flow is opened, it stops the leakage from the ventricles. Dr. Damadian explained to me, when you stop the leakage, you stop the progression of the disease, and your body tries to heal itself. That is what I feel I experienced. I was in my sixties when treated, and cannot help but wonder how much more could have been accomplished if I had been able to have this treatment much earlier in my disease. I am more hopeful than ever that progress will take place with this science and so many more people will get real help with this disease as well as other neuro degenerative diseases.
Do you have an interest in the research? You might go to YouTube and type in the names, Dr. Raymond Damadian and Dr. Scott Rosa. They have videos describing their research. These doctors are not lightweights. Having developed the only Upright Multi-position (weight bearing) MRI in existence, Dr. Damadian was able to compare the CSF pressure in the brain both recumbent and upright. (This allowed him to see the CSF pressure in the brain of an MS patient was more the twice normal in the upright position than in the recumbent position) You have to understand, the lesion formation has been imaged as it was happening…not in a mouse, or in a theory, but while the CSF leaked from the ventricles and formed pools around the nerves in the brain creating the lesion…in a human being…non invasively. AND, no other scientist has done this! There is so much more to this story, and so much more evidence of patients being helped by opening the CSF flow, and so much more science to be done. If you like the research…the sky is the limit in the future as it impacts so much more than MS. I am not a doctor or researcher, just an MS patient who has gotten help even though in SPMS.
Nicole, I too have had MS a long time. It certainly does a number on attitude. I am lucky because I got help with my disease.
Great post my dear. I shared it with my Facebook group of African American women with MS – We are illmatic. PLEASE check it out!
Thanks for sharing your story – for being willing to be vulnerable and honest.
Thanks for sharing. Your story is inspiring.
Great job of pushing through!!
I keep a gratitude journal. Reading ot especially on the bad days help.
Nicole, you continue to inspire me. Thank you for this message…a reminder that we are not alone. Blessings!
sometimes reaching out for help, even to those who you know are there for you, is hardest when you most need it…. glad you were able to come out the other side of the forest of despair to lightness…
Nicole, my heart goes out to you more than you know. You remind me so much of my mom, who also had PPMS. Reading your blog actually makes me feel like I’m reading hers. My mom really enjoyed reading your blog. I’m not trying to self-promote, but you said that you’re longing for someone who understands. I really think you would find comfort in my memoir, called “How’s Your Mom?”, which my mom and I co-authored. It’s available in ebook on amazon and barnesandnoble.com. At the very least, I think you’ll feel a bit more understood. My mom also used to do the yearly inventory of loss, until she finally decided it wasn’t worth it. I think you and my mom would have been great friends if you ever met. In fact, NOLA was one of her favorite places in the world!
Sending you a big hug.
Well written and beautifully said. I feel the same way. It’s hard for people to understand
Nicole, you are such a strong lady to recognize what you needed and to get it. Support groups can be so amazing to find common ground with people who really get your truth. I’m so happy you found your way through.