Last reply 10 months ago

This is a long letter but it documents my last 10 years

I have always felt that it was important to share my experiences with MS with others. The more we share with each other, the more we can learn about ourselves. Recently, my neurologist suggested that I browse some of the MS sites on the web. She told me she is amazed that I can relax and even joke, while we discuss changes in my health, which can be discouraging. She thought my positive attitude towards living with MS might benefit others.
I started looking up some of the MS sites out there and read about people’s fear and desperation. There were so many stories of loneliness, depression and divorce. It was disheartening to see how a diagnosis of MS caused such suffering and devastation. I live with MS every day. It is a part of me, and I am OK with it.
I don’t think I was always OK with it. I was scared too. As we come to the end of a decade and my son starts college, I have been looking at photos and other memorabilia, then I reviewed some of my medical records to see the changes that have occurred in my life over the last ten years. Over the last decade, I have started to see steady changes that give me an idea of what the future might be like. But I was diagnosed with MS almost 30 years ago, so the last decade has certainly not had the unpredictability or fear of the prior two decades.
By 2010, I had been officially diagnosed with RRMS for 8 years. But it took 7 years before that to finally find out what was wrong. I had exasperations which would cause pain or weakness in my limbs but by the time I got to the doctor to be tested, I was fine. I had painful spasms that also couldn’t be recreated in the doctor’s office. I did some research on my own but, when I would bring up the subject, I was told that men didn’t get MS so there was no reason to test for it.
It may sound crazy but I was almost relieved to finally find a doctor who diagnosed MS. I now had a name and a prognosis (well sort of) and the possibility of treatments. By the start of this decade, I hadn’t experienced the kind of dramatic changes I had been led to expect from my MS and felt very fortunate. Weakness in my left leg and drop foot gave me an uneven gait and I had occasional vision problems. Since balance had become an issue, I left my job as a field engineer for a desk job that didn’t require climbing. Mentally and emotionally, I still felt well. MS exasperations come and go, and I certainly had more good days then bad. It treated me like a bizarre flu or seasonal allergy. Heat wasn’t the issue I had been led to believe so I was able to ride my Harley motorcycle from North Texas to Sturgis, South Dakota in August for several years.
There were significant advances in treatment. The large quantities of steroids stopped. I started with Rebif when it was brand new. Then I was on Tysabri infusions for 8 years after its second release, much longer than most people are. Tecfidera came out but I couldn’t stomach it. Then back to injections with Copaxane. I developed some serious pain in my back. I don’t know if this was caused by MS, but I am always discovering new side effects from the years of steroid treatment and calcium deterioration is one of them. I found out that several of my lumbar vertebrae had fused together. To repair other crumpled discs, back surgery they fused much of my cerebral spine and the rest of my lumbar.
MS is full of surprises so no one knows if it was MS or spinal surgery which caused the numbness on my left side to worsen. My left leg got weaker and I started using a cane and avoiding stairs more often than not. The VA got me a Bioness L300 which helps with my foot drop and makes it easier and less painful to walk, but I am now fully committed to using a cane.
The early treatment with heavy steroids caused my cataracts which were resolved with surgery. But then I started having problems adjusting to changes in light. Between the vision problems and left side weakness I finally had to sell the Harley. I failed the tests for color blindness, those same tests that always made me laugh because I couldn’t imagine not seeing the numbers or letters. I couldn’t have retired from the US Navy, and been Electronic Engineer if I was color blind. Somewhere around 2014 – 15 fatigue started becoming an issue. Chronic fatigue from MS can actually cause narcolepsy and I noticed I was falling asleep at my desk, at home, and even in the car at stop signs and red lights. The doctors first prescribed Adderall which made me too edgy to sleep when I should and then crash harder when it wore off. Now, I take Provigil (modafinal) and although I’m still fatigued, I am able to manage it much better by taking time to recharge and lots of naps.
Depression is a common symptom for people with MS. I certainly suffered in the stressful years before being diagnosed. Depression started to hit hard again a few years ago. The back pain kept me from so much I wanted to do and when I was finally able to resume some activities, the heat started to affect me. My son became an Eagle Scout but I couldn’t camp or hike with him. I was anxious about him starting high school and worried constantly about saving money for college and paying off debts because I wasn’t sure how long I could keep working. There were a lot of restless nights. I didn’t want my family to know the extent of the pain and depression so I tried to ignore or work through it. On my son’s 16th Birthday we had an argument and later that day, I overtaxed myself in the yard and collapsed from cramps and muscle spasms. I was terrified and but was finally able to crawl into the house. When he got home, I promised to make it a point to let my family know how I was feeling.
Christmas 2017, my wife told me it was time to stop working. I had been employed since 1975, 20 years in the US Navy, followed by a corporate job and then back to government service with the FAA. But my pain and suffering were wearing on everyone in the family. She said 42 years of working was enough and I should stop, spend time with Jordan before he left, while I could still enjoy retirement. I took medical retirement in January 2018.
My condition has advanced to SPMS. I’m not sure how they determined the transition from RRMS to SPMS. Am I heading to PPMS? It is active again and is progressing towards my pituitary gland. It gets harder and harder for the doctors to control the inflammation in my retinas. In the past year I stopped Copaxone and started Rituximab infusions every 6 months. I just had my 3rd one and the only side effect I’ve noticed is my arthritis doesn’t hurt as bad and I’m starting to play the guitar again. I’ll get an MRI after my next infusion, hopefully the medical benefits are as good as the side effects.
I’ve always said “I have MS, it doesn’t have me”. But, sometimes I wonder if saying that has just become a habit or do I really have the attitude my doctor sees. There have been some hard times over this decade. Spreading hope and sharing with others on the MS sites has been my salvation. I started reading the post and my comments to my wife. We talked about how we both have MS since it affects both of us, as well as family and friends. 30 years ago, I found out what was happening to me. The next ten years were spent learning to deal with it. I kept it all inside and wouldn’t put down the man card and say I had problems and MS.
This last decade, I have learned not only about MS but about my MS. All of us have MS and treatments for it. Neither the MS or treatments affect us the same. But. each of us has an inner strength that keeps us going. I can’t tell you what your strength is or where it comes from, you need to reach down and find it. For me it is my faith. I’ve been a Christian my whole life but sometimes it feels like that too is something I say, rather than the way I live. It is difficult in today’s world to openly confess your faith or a relationship with God. My trust in God grows every day and is the source of my strength. Yours may be something else. But, you have it. So, wake each day and try to think of something positive in your life and focus on it to get out of bed, no matter how hard it is. Don’t wake up thinking about your disease and the difficulty you’re going to have during the day.
This last decade has brought me lots of positives to focus on. My son is an Eagle Scout because of my support, not my physical labor. He graduated from High School and is in the college of his choice. Last year I gave my wife a 30th anniversary ring and proposed to her again. MS did prevent me from doing it on one knee, since I might not have been able to get up again. Might of ruined the moment. She said yes and thanked me for marrying her, the way I thank her every day for marrying me.
My daughter is succeeding in her career and incredibly happy in the rest of her life. happy and her career is getting stronger. We may have had to move to a single story but it is a nice one and I don’t worry so much about money or work or the future. I have MS, it doesn’t have me. You have MS but it doesn’t have you. I believe this is more than a bumper sticker.

I give faithful prayer that someone that reads this gains something beneficial out of my remarks. I stand a chance of offending someone too. For this I apologize I felt it was important to pass down to others with MS.

FINAL NOTE: I journal details if I have a good or bad day. It’s a strange disease, again I stress, it and the treatments affect each of us differently. When I go to he Dr. I can summarize my notes from my journal to start a discussion about MS and treatments. Communicate with your Dr and learn your disease.

Weather Low __ degrees, high __. __% rain wind ____ at __ mph. Short summary, sunny, cloudy, rain, cloudy….

A. Pain (1 – 10)
1. Rate it and describe it

B. Health
1. Any new or prolonged issues

C. Fatigue (1 – 10)
1. Rate it and describe
2. Sleep XX:XX myAir score XX, fitness tool rating…

E. MS issues
Make notes on things that you think could be an MS thing.

F. Planned Actions
Some may be next 24 hours others a project, Limit it don’t overwhelm your self

G. Success of Plans
What was good or bad and why

H. Weight ______ I do this weekly

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10 months ago

@doug_graham thanks for sharing this, a lot of it rings true for me as well. MS is just a part of us, don’t let it overshadow all the other great components of who we are. In some ways having MS does force a different perspective on life, but it’s not necessarily a bad thing. It makes you appreciate what you CAN do now. I climbed a mountain a couple of months ago with my 8 year old son just to see if I could still do it. A wonderful day that I will remember forever. If I didn’t have MS, and knew that I could easily have climbed it, I probably wouldn’t have bothered trying. I’m not sure how eloquently I put that, but I hope you get the idea 🙂

10 months ago

@elisabeth_turner. Thanks for your remarks. I hope others understand the things that we accomplish after diagnoses. Focus on that not what we can’t do with MS. I just returned from Salmon Fishing in Alaska. They had to help me in the boat and I got to ride in a chair and mostly fished from a chair. But, with my best friends the 4 of us caught 325#’s of Salmon and Halibut fillets. I too probably wouldn’t have spent the money or taken off the time to find the roses to smell. You are very eloquent. Continue to keep your perspective.

10 months ago

Well @doug_graham, I can tell you are ex-military! Thanks for sharing your story, it’s an encouraging read for others who are either at the beginning, or some way in to their journey. I have only been diagnosed in the last three years, but having processed everything that comes with a diagnosis, there are changes I’ve been able to make to my life that have made it considerably richer in many ways. Like you, I am able to focus on the things I’m able to do, rather than the things I can’t. Wow, salmon fishing in Alaska, that’s some achievement, I bet it was beautiful too 🙂

10 months ago

Thanks for sharing your life with us! It’s nice to read encouraging posts about living with MS. I was diagnosed earlier this year (kinda late in life like that real old coot on here- @highlander). We’ll all have rough patches & hard times; those with or without a chronic disease. I tend to think there’s always a lot of folks in worse circumstances than me & that keeps me from sinking into the mire of self pity. I try to start naming & thanking God for the things I’m grateful for. “The Lord is mindful of us” is my favorite quote.

10 months ago

Thank you @doug_graham !

10 months ago

To all that have responded thank you and may God bless each of you. As I said I’m weak biblically but my faith is getting stronger everyday. My preacher has asked if he could use what I do on numerous MS sites and clinics in this Sunday’s sermon. In today’s world it seems almost difficult to profess a relationship with God. I’ve offended a few that hold God responsible or refuse to acknowledge there is a God. If following God was easy more would do it. Again, I write too much. But, I’m just bubbling over with energy that my comments touched someone.
I do need to upload photos of my Alaska fishing trip. Prayers for all of you. Doug

10 months ago

You’re using your country’s hybrid version of English again….
What is a coot?
I’m not sure whether I should take it as an insult or a compliment….
Now I would describe myself, as
a sometimes over opinionated, sarcastic and grumbling 50 year old ex-squadie who still hasn’t grown up, who’s main aim is to be better at grumbling and sarcasm than my predecessors…. although they did set a rather high benchmark.
How am I doing so far?
Welcome aboard…..
I hope your voyage on the good ship shiftMS sails a true and steady course.
Above all else keep a sense of humour 😀

10 months ago

Old Coot: It’s now used somewhat affectionately to mean “an elderly fellow.”
Love nicknames. You’re a lot like my hubby, a retired US Marine Corps Sergeant, whom I lovingly refer to as “the old goat”. He was pretty offended when he ordered coffee last week & the cashier yelled out “Senior Coffee”! 🤣🤣🤣

10 months ago

We have a lot in common. I too am over opinionated, sarcastic.
@rmdaniels I looked up coot. I was a bit concerned if highlander is 50 and I’m a grumbling old man that turned 61 today. Does that make me a double coot? 🙂
But coot is defined as
1. An aquatic bird of the rail family, with blackish plumage, lobed feet, and a bill that extends back on to the forehead as a horny shield.
A foolish or eccentric person, typically an old man.
I believe you’re referring to the informal version of coot. However, I am aquatic, I did spend 11 years of my 20 years in the US Navy at sea. I too have bills that seem to extend on forever, well at 61 my shield isn’t as strong as it used to be.
I refuse to grow up. My son had to write a paper discussing maturity of people when they get older. He used myself and my friends as an example of becoming more immature. We love practical jokes and we’re at the age before political correctness. He made a B on the paper. He was told it was an excellent paper but the details of our practical jokes on him as he reached puberty were not needed in the paper.
I believe our world has forgotten how to laugh at ourselves.
My voyage has been great. I tend to get wrapped up in letting people know that MS isn’t the end of life. I actually tend to try things that I probably wouldn’t have before getting MS.
And for you highlander I hope you continue to have fair winds and following seas.

10 months ago

Laughing and playing practical jokes take years and years off your “effective age”, lol! So, that being said, you and @highlander should both be just “old coots”, in an affectionate, elderly way! 🤓
I can laugh b/c I’m the same age as @highlander…so that makes me an old gal I guess?

Thank you for your service, my dad was a Navy man too, back in the 60s. I have the utmost respect for you military folk.

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