The Difference Between Living and Existing After My PPMS Diagnosis

The only way I can cope with it is to think of it as two lives. Life 1 was perfect, lasted 40 years and gave me incredible memories. Life 2 started the day of the diagnosis - no second chance (like many cancer sufferers get), no real hope - the EDSS is a nice little crystal ball showing us the future. As it’s a chronic, degenerative disease it always gets worse. Over the last 20 years I followed all the potential game hanger treatments CCSVI, remyelination therapies, stem cells… they’ve all come to nothing. The neuros don’t know the diseases they treat and certainly have no track record of seeing their patients get better. The various DMTs are good at tackling focal inflammation / relapses, but there’s now talk of smouldering MS as the cause of disability progression. Maybe BTK inhibitors may make a difference! My two lives couldn’t be any treatment- steak v dog sh*t. I miss my old life so much. You are right about remembering what you could do. Nasty, insidious disease.

Please tell us about your experience with Ocrevus.
Thank you

I am so sorry for Stephen and what he is going through and feeling. I have also been suffering symptoms for years and, although my doctor encourages to get a diagnosis, I have not done so. In the last three days I have begun to have issues with my left eye so, a medical intervention seems to be on the horizon. I also suffer from sadness over parts of my former life. I grieve over the many animals I have rescued, rehabbed and rehomed. I weep frequently, sometimes for apparently no reason. I pray and thank God for the strength he gives me to mow my own grass and do yard work. I am 75, a widow, and my family consists of 6 Jack Russells, they are my blessings. I can truthfully say today, with all of this, I am living my best life and love everything except having lost my job 2 years ago. The only thing that I worry about is making arrangements for my little dogs in case of an emergency - nothing else really matters.

God Bless you Stephen.

After 14yrs with m.s. i took up golf....recently shot a 91 at a tough golf course. Ya never know how this is going go...i try not to focus on it. No meds and no special diet....definitely have off days but doing ok.

I was diagnosed with PPMS Sept 2015. I too am still walking. Can’t go long distances any longer but I do take my dogs out for walks. I think that helps me. I do 3 walks a day. The heat kills me. I live in So Florida so in the summer it can be a killer. I look for clouds to time my walks if possible. I’m also not very good w/ dealing with stress any longer and I can have a trigger temper when exhausted. I’m retired now. Keeping the house in order and taking care of the animals (2 dogs/4 cats) is on me now. And I guess that keeps me busy. Sometimes I feel like I’ve never worked harder in my life! How do I deal with my diagnosis? I don’t think about. I don’t dwell on it. I take it one day at a time. I remember reading about Olivia Newton John and her cancer diagnosis. She said she didn’t think about it. Felt that if she did she would give in to her disease. When I heard that, I said that’s how I handle mine. I am not on any DMT yet. I just take my vitamins including one Neuriva De-stress per day. That seems to help me. But everyone is different and I know I would probably be reacting differently if my disease was worse that’s it is. For us who still can walk even though our gait may not be the best- don’t overdo things, don’t exhaust yourself, take your time. I notice when I rush things happen like me falling, dropping things, getting irritated. So I take my time with everything. Hang in there Stephen.

Yes. I exist. Therefore I am…in 10+ pain, cry all the time,, Homebound, can never, ever get comfortable. My heart hurts for my beautiful 18 y/o daughter. My only blessing Dx 46. Taught hs 30 years with a smile. Loved life even w rrms. Now very SPMS 61 no mobility. My hubs is my soulmate. So very sorry. Our disease is cruel. We were robbed.

You describe the emotions and the daily ups and downs of living with PPMS. There are too many times when I feel that I am just existing, but then again I have to put everything into perspective because I can still see, still hear, sleep, eat (with some difficulty as of lately), etc. Like you I have a tendency to live in the past remembering what I was like and all the things that I could do. Strangely, in my mind I still feel that I can do those things, but physical reality shows me that I can't. Perhaps the thing that bothers me most is the burden that I place upon my wife. She literally has to live two lives. With that being the case I often ponder what the future will bring and how long can she continue to care for me. I was diagnosed in 2000 and I have learned to understand my capabilities of what I can and cannot do. It's a bummer, but we have to live in hope that some miracle treatment/cure could come along at any time. Keep the faith brother!

Stephen,
You need some tough love. Stop focusing on what you can't do and focus on what you can do. You now have the opportunity to become a glass-half-full person. No one can be positive for you it is on your shoulders. I am 100% with you, I was diagnosed a year ago. I was told my MS was very aggressive and I had many lesions more than 15 in my brain, neck, and spine. Another doctor told me my case was prognostically concerning. None of this is a debate.

I am attacking my MS and I hope you will also. There are things you can do to make the best out of your MS. Make mental changes, dietary changes, physical changes, possibly even friend changes to live your best life with MS. None of us choose to get MS but we must choose how we handle it. It is different for all people. Sounds like I may be more fortunate than you and I don't take that for granted. I am not a Dr, I am new to MS so I don't know much. Since my diagnosis, I have become a better person and I want to help others if I can help you I am here for you. Best wishes, start living. Like your wife says "yes you can".

Hello Steven- The MS Blog and MS Selfie are where I get my most objective MS Info. I turn to MS News Today to see how objective info gets filtered by a more commercialized website. I am a somewhat suspicious or skeptical fellow and often look deeper at things to try to understand… whatever. I have MS too, not since 50 yrs, but since around 30. It was a slightly different MS world back then with little info readily available. Today info (good and bad, without being labeled as such) is all over the place. I am “inactive” SPMS, which puts me in a different boat than you, so to speak. But you got a chance to do things till 50 while I was interrupted and set in a new direction at 30. We are both related to New Jersey, your business and life are there. Mine started there and I have a BA from Rutgers. Do you attribute any of your writing talent to Perdue, or did it exist before?

I can write essays about the course of my life and how MS has impacted it, from marriage and relationships, wealth accumulation, employment and law, to things like self satisfaction…on and on. Here, you make a point of dividing the before and after diagnosis periods into living versus existing. I would only comment that as an intelligent person, you will naturally drift towards “living” and purpose. But I would suggest to you that you don’t have enough experience with the “monster in the room” yet. I would also advise being careful not to inadvertently validate others’ inability to take action, or to attribute outcomes to supernatural causes, as in “why me?” You bring up interesting subject matter, and not as a criticism, I’m left wondering how you “stumbled” into the role of commenting on your MS experiences at this website. “Why you”? Good luck to you. Find some meaning!

I worked hard at improving my woeful coping strategies, and it took me a long time. I learned to stop “doing “ as soon as I felt tired instead of going on until I felt exhausted after which I would feel worse for two days! I have to accept doing much less. My breakthrough came when I decided to pay attention to gratitude self talk, and let the negative, hopeless thoughts escape my notice. I have found books, physical or recorded, and music that make me feel more positive, and this helps my wellness. I hope you can find what grows your wellness soon.