Hi folks! It's David and Millie again. I wanted to share with you a bit of my experience today to see if yours was similar and what you did about it. In part, I'm responding to those waiting for a diagnosis and those who have one (that's all of us, I guess.). This is what happened on that day in November 2015 when I got my PPMS diagnosis...
I traveled from the Knoxville area to Nashville (My primary couldn't get me in to see a Knoxville doctor/neurologist for diagnosis/treatment so I was referred to Vanderbilt) by myself, yet again for what was another doctors appointment in the midst of so many (MRIs, lumbar punctures, blood draws, neuro-psych evals, opthamologists...). I left home a bit earlier than normal and dropped by a nice mall for a little retail therapy, lunch and to kill a bit of time before the appointment. It was a good distraction as I felt awful due to MS.
Internally, I was feeling like a pin cushion with the properties of a ping-pong ball - stuck and tossed about, bouncing around with no control). I was wanting to know what was up, but afraid of what it could be. And I was frustrated. The frustration was heightened by the traffic (Nashville traffic is no fun and I've driven in Boston, Houston and Mexico City!) Maybe I was feeling dread, anxiety, hope. Whatever it was, I was feeling it.
That day I was to meet with a new doctor from the clinic. I wasn't sure exactly why, but I figured the more doctors to work with me the better off I would be. It turned out the doctor I met summed up all my tests and talked me through it all yet again. I was told about the plaques found on 2 separate MRIs performed over time and focusing in different areas of my brain and spinal column. We talked about my symptoms, yet again.
He also showed me something on an MRI that truly frightened me. I was told that my brain had shrunk. This scared the poo out of me as I've always made my living using my brain. I had also found great joy and purpose out of using the God-given abilities I have. I was shocked and mortified. He told me this was normal for someone with my diagnosis. Not very comforting. I was wishing for a hand to hold or someone to hug me. Even more, someone to pray for me. I was numb.
The doctor gave me more information with a "clinical manner". To this day, I can't really remember it all.
Then he gave me the news. I was diagnosed with Primary Progressive MS. There was no real treatment. The symptoms may be managed. He proceeded to write out several prescriptions and I was excused from the office. The hallways were long and I managed to stagger to my car (no cane at that time) and get in.
I remember sitting there getting angry. I was by myself. This was more bothersome to me in the moment than the diagnosis. I just wanted someone to be there. (Let me tell you a bit more about me: At that point, I hadn't gotten Millie. I was going to find her the next week at the Atlanta shelter during Thanksgiving. I am not married and have no children - except the furry kind. The little bit of family I have lives in South Alabama to the Gulf Coast (aka the Redneck Riviera!). My dearest and best friends live in places like Atlanta, Memphis, Destin, Orlando, Hong Kong and Knoxville. It's over three hours driving time to any of them from Nashville.
The thing you should know about me now is that by profession and training, I'm a hospital and hospice chaplain. I've lived my life and made a living working with people. Now I had become like one of my patients - I had a diagnosis. And I was angry - not at God, not at myself or those I love. I was angry because there was no one there that could do for me what I had the privilege of doing with others. I had been there to listen to, support, guide and in many cases help others connect to some sort of hope. I guess I was feeling cheated. I had been lectured to, given a few scraps of paper, and then tossed to the street to fend for myself.
Ahead of me was the bad Nashville traffic. Not a great prospect. I did get through Nashville before it got so bad. After I got past Mt Juliet, I got on the Bluetooth and began reaching out. My community of friends and family was there. But they were at a distance. They were wonderful, as they have been since then.
I drove home 3.5 hours with my friends on the phone so I wasn't truly alone. And, I do believe that God was with me. But it was a long drive at the end of a long day.
What I was beginning to see was that my journey with MS had only just begun and I was not alone. In this, I realized there was hope. I had a diagnosis but I was still me. My abilities and strengths were still there. But they are finding new ways to be expressed. Even though how I know myself is changing, I am still me. I am now "David with a disease called MS" among so many other things. Those things aren't gone. They may be covered over or harder to express, but I'm still me with another dimension.
I'm under no illusion about the fact that there were and are and will be tears. And, I am not alone in my tears. I believe that those tears are precious to God. Psalm 68:6 says "You have collected all my tears in a bottle." I believe that each tear is precious to God, and is not wasted. Therein was one part of my budding hope.
(BTW, The mall trip was a bust.)
Written by
DavidinKnoxville
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David I read your post and had tears, I am so sorry you went through the diagnosis alone but very thankful you had friends to reach out to on your way home. When I got my diagnosis I was 27 years old and alone as well, on my way home I stopped and bought a $100 dollar Thomas Kinkaide picture lol I shopped away my fear and disbelief 😊 that was 23 years ago and I still have the picture.
Hey Sandra, Thank you for your response. I'm glad that you found the comfort you needed as well. In reality, I don't place blame on the docs. They are part of a system that forgets to be human. My experience has caused me to become convinced that I can become a voice and an advocate for those experiencing similar traumas. Part of my current healing is to share my story that is why I am sharing these stories. All the best! David and Millie.
David you, like many of us, have already been through the wringer. The first thing I want to tell you is that everyone's brain shrinks as we get older, MS or not! There have been studies done that indicate that brain training helps. I understand your terror; I am a CPA and writing is a hobby, but honestly, we all need our brain power. Even though your neurologist told you that your brain showed some shrinkage, it doesn't mean that you've lost some specific ability. Don't let that first experience scar you. You did need someone to be with you. Take a deep breath and try to relax a bit. You don't have to figure out everything all at once.
Lisa, thank you. Yes. This journey was not what I expected it to be. It has been a surprise. I did know some about the brain before this. What I did have comfort in was knowing that the core of who I am is still there. I do believe that my experience is causing me to become a different voice. It is true that we are in something of a wilderness. I think that my writing is going to help me in my next stage of healing. I have struggled with wanting to figure it all out at once. All the best from David and Millie the cat!
I was told the same thing, in a tone like I was told I had a cold: my brain would continue to get smaller and smaller and you would eventually be like and Alzheimer's patient, only you will still know people. And there is no medicine on the market to help you. I asked for some anxiety medicine to deal with this terrible anxiety becaiuse I was freaking out and cryingl She said that is not an MS synptom, needed to go to a pychiatrist! Real cold jerk, she was! I went to anothr doctor for another opinion. They can be so cold, cruel, without any compassion. I would like to know how they would feel if they had that diagnois. One article said, "expect to grow slower and dumber." Such a bright life! BUT" God's eye is on the sparrow and I know He is watching me, providing for me, and cares deeply for my soul, I am just traveling through this weary land and looking forward to the other side!
I would be remiss if I did not clarify a point or two. I've had some great experiences with my doctors overall. And, I truly think that Vandy is "the bomb" for patient care! I think it was this doctor and my shock in part. Now, I've got a great doc in Knoxville. She and her team have been great. That's been a sign of God's grace in this.
I don't think I'm going to get dumber nor do I think you or others out there will. But I do know that my experience with MS on different days is like walking through cold molasses - that's not cognitive, that's neurological.
Agapepilgrim I have seen some awful doctors but I've never been told that. I'm sorry this happened to you. I say- to that doctor -pound sand! If you're so smart Where's the treatment? I reject what you were told. That sounds like some jerk who has a God complex and it's really not about YOU. Exercise as best you can and as much as you can. Eat lots of fruits and vegetables. Get on a treatment and stay on it. Never go back to that doctor: you do not need that crap in your life. I went to the vaunted Cleveland Clinic for two years and experienced similar treatment from her. I will never subject my to that woman again. I have a friend who also went there, but she saw a different neurologist and that's who I will see. Forget about that $&%#^£*!
Sorry to read about your horrible experience with neuro. I also have PPMS. My neuro wrote me script for pure biotin. I get it from a compounding pharmacy. Since I have been taking it, it has helped my legs to feel stronger. Now I can walk further with my walker. There is a new medicine for PPMS waiting for FDA approval: ocrevus. It is given by infusion. It is supposed to be available by the end of the year. Like other MS medicines, it only slows down the progression of the disease. It does not help you to recover what you already lost.
I go to acupuncture once a week. It helps control my leg spasms. I also go to PT weekly, and to massage therapy. I've been told that water therapy is also beneficial. But I am reluctant to try it, since I don't know how to swim.
I have been following Swank diet since April. The idea is to eliminate saturated fats from your diet. This will supposedly help to reduce body inflammation, which should reduce number of relapses. The one thing I miss the most is chocolate. I have not had any more relapses since starting the diet.
Glad you are still able to drive. I had to sell my car a few months ago, since it was just sitting in my garage.
I also go to cognitive therapy, since I am having trouble with short term memory.
Contact the National MS Society. An MS Navigator will send you lots of info about MS. You can also ask them about local MS Support groups. There is also another MS forum I belong to: My MS Team. The members there are also kind and supportive.
There are lots of resources available to help cope with MS. It is a pity that your neuro did not think to share any of them with you.
I appreciate the thought on the biotin. I'll ask my current neuro.
It was so odd that I left his office with no other resources than prescriptions. Part of my story became finding those myself. But I also know this is a disease you can't do alone.
I'm glad to be sharing the journey with you and all the rest.
Your right. Your NOT alone. MS is a terrible disease and no cure has been found. My son has it and has been denied SSD so now he is in appeal hich can take 12 to 14 months even to get a hearing. He has no income and is in danger of loosing his house. He lives off the local food pantry. This is a terrible way to treat our sick and SSD should be ashamed. So have faith and God Bless You and all Gods children who have this terrible disease.
Re: SSDI, be sure to document, document, document! I mean: keep a daily list of how your son feels, how the MS affects his daily activities, and don't be embarrassed to record EVERYTHING. It didn't happen often for me, but occasionally, incontinence occurred and I would have to start all over getting ready for work. You must overcome any embarrassment or shame as you fight for your rights. I believe that both the MSAA and the NMSS have folks who can help you with the process. Try to put your (his) emotions on hold until you win this fight. I have been there. It sounds like it's time to get an attorney involved on your son's behalf, which stinks, but if it achieves the award, that's the important thing. Best of luck!
Hello, David in Knoxville. I completely understand. Not to be immodest or anything, but I was a very successful litigation lawyer when I got my diagnosis in 2010 at the age of 57. I earned the highest rating in every law directory; I was a Superlawyer (top 10% in the State in my field), and consistently named a Top Lawyer by the local professional guides. I had to turn business away, I was so busy. I had the respect of my peers and I did not lose very often. In fact, I was basically at the top of my game when I got diagnosed. I tell you this not to brag, but just to show you that you are not alone; I, too, made my living with my brain, and now I couldn't control my hands or legs due to a lesion that decided to invade my brain stem, and lots of lesions on my spinal cord. In fact, the number of lesions on my cord so outnumber those in my brain that the doctors thought that I might have NMO, which thank goodness it wasn't. The worst thing of all was the little black holes that started to develop in my brain, so that while I could still do my job and would continue to do it until I no longer could and was forced to retire in March 2013, I would sometimes become confused and forget my train of thought, or simply be unable to recall things that I had known my whole professional life. I cried when I got my diagnosis. I had survived liver cancer at the age of 19 and I sincerely thought that G-d was through with me. But, as they say, people plan and G-d laughs. I do have a loving husband and we've been married for 38 years. But he has his own issues, having had a stroke 5 years prior to my diagnosis, and he cannot use his left arm and is basically numb on his whole left side, although he can walk. But he doesn't have MS, and sometimes he just doesn't understand. It's not that he doesn't want to, it's just that, I guess like his post-stroke condition, unless someone actually walks in your shoes, they just can't fully understand. Luckily for me, we are both dog lovers to the max. We have 2 rescued pit bulls who are just sweet as pie. When I get that horrible nagging MS pain all over my body, I get solace and comfort simply from talking to and petting and hugging my dogs. Did you know that when a human pets a dog, the human brain releases oxytocin which is calming and soothing? What you need, David, is a certified therapy dog, so that you can take her with you everywhere that you go. I am sure that Millie will fill the bill with a little training. First, get a note from your treating doctor that you need a therapy animal. Then contact your local humane society and find the name of a good trainer who can train Millie in the basics of being a therapy dog, which is much different than the requirements for an actual service dog.. Then Millie will be able to get a vest showing that she is in fact a therapy dog and not a pet, and under the Americans With Disabilities Act, she can live anywhere and go anywhere you go, even on an airplane. Trust me, dogs are the greatest thing G-d ever created. The listen to whatever you want to tell them, they are completely non-judgmental, and they will comfort you whenever you need it. And then, there's always your on-line network of support, people who do understand and who do walk in your shoes. And me? Well, I retired on SSD (so is my husband) and we moved across the country to one of the most beautiful places on earth. We have made new lives for ourselves and are very happy. Sometimes it pains me very much when I think about how quick and sharp I used to be when I had a fully functioning brain compared to where I am now, but you know what? Sometimes you just have to say "what the heck" and move on, and while that takes a lot of work we haven't been given any choice in the matter. Good luck!
I would add to this by saying contact Canine Companions for Independence (CCI). The group was founded by a woman with MS, although they provide beautifully trained dogs to both adults and children with all kinds of disabilities, from muscular dystrophy to stroke to MS. They are based in Georgia but have regional offices throughout the country. Here's the link to the website: cci.org
There is a plethora of great information there. Do it today! 💕
Thanks, Lisa! In my former job, I began a formalized pet therapy program for our hospice patients. What a cool thing to see - folks coming to life again because of some wonderful, beautiful dogs!
I appreciate your guidance. I love your story. It seems I've seen some cat therapy training out there. But I understand its not always as successful as dogs.
It does sound like there are a couple of touching points between your story and mine. I'm in a process of figuring out what I am going to do in the future.
Hi David, dog is after all God in reverse. I get so much comfort from my dog Razor, he has seen me through 5 operations. I have PPMS but I don't have relapses, what ever new symptom I get I keep, I am due to see a councillor as I cannot take anything for depression as the medication upsets the restless leg, cel a vie !!! Cheers Jimeka
Hi, Jimeka. Glad to hear you've got Razor! G-d should've broken the mold after he made dogs and horses. Instead, he had to go on and create humans to mess everything up!
Oops, sorry David, I didn't realize that Millie was a cat! That, however, does not disqualify her from being a therapy animal! All you need is that note from your treater. (Obviously I am a dog person, sorry)! And you should get SSD--after all, you worked your whole life to pay for it! Best of luck!
I'm glad you have strong beliefs in God. So do l but sometimes... Dr Phil says "pray to God but row for the shore". Great advice. The best advice l can give you is to go to physical therapy. It will help keep you mobile longer. Try to find a therapist that specializes in m.s. your local chapter of m.s. society can help you.
It would be nice to afford physical therapy, cognitive therapy, speech therapy, water therapy. I receive financial aid for my medicine, but that is all. Breaks my budget just to pay the co-pay of $175 for MRI and $50 for specialist. At least my monthly blood work is free!
Have you checked with your state to see if there is a medical plan that can help you out? Some states do have them. Another situation where an American can't afford medical help. What a disgrace! Have you checked with the NMSS? Or the Ann Romney Center? Perhaps they could direct you.
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