I Had to Make Difficult Business Decisions After My PPMS Diagnosis
On Feb. 28, 2021, my wife and I visited the MS clinic where I was diagnosed with primary progressive multiple sclerosis (PPMS). After receiving this life-changing news, I was an emotional wreck.
While touring the clinic, I saw a person in a wheelchair go into an exam room. I broke down and started to cry. I am a farmer, and farm work is all about one’s physical abilities. How would I handle all of the symptoms of MS?
I’d read that heat can cause symptoms to worsen — another indicator, or “tell,” of the disease. How would I handle the heat while working? Temperatures can rise above 100 degrees inside the greenhouses, and at the height of the first growing turn, it can be over 90 degrees outside. What are my chances of being able to continue doing what I love, I wondered?
At the clinic, my nurse and doctor were empathetic. They told me that everyone is different, so they didn’t know how PPMS would affect me. I’d have to learn what I could tolerate and what I’d be able to do. The doctor ordered four weeks of physical therapy and scheduled my first infusion of Ocrevus (ocrelizumab) for March. My team wished me good luck, and then I was on my way.
Decisions, decisions
I then faced the difficult decision of how to proceed with the upcoming growing season.
My wife said she would support any decision I made, but believed I should move forward with the season. I began a series of intense discussions with family, friends, colleagues, and customers. The spring material had already been ordered, and the planting would need to start shortly. Mother Nature and Father Time do not stop. Most of my contemporaries agreed that I should open for the season, but I decided to wait and see if I benefited from physical therapy.
The first few physical therapy sessions involved basic exercises that didn’t push me. Used to pushing myself to the point of utter exhaustion, I felt frustrated and asked the therapists to make it harder. They laughed and said, “Your body needs to tell you what to do, not your mind.” While I understood that, my job isn’t to sit behind a desk. I needed to know how much I could handle physically.
After much back and forth with the therapists about what type of exercises I should do and how long I should do them, my wish was eventually granted. I did the more challenging exercises every day and found that they helped a little. I realized, to the delight of my wife (“I told you Pilates would help!”), that working on my core and balance was critical to being able to function at the farm. (“Men don’t do the ‘P’ word.” Ha!)
Feeling a little better mentally, I decided to open the farm for the season. Physically, I still struggled, as the fatigue and heat affected me dramatically.
I had always worked alongside my employees; my philosophy is that they work with me, not for me. But I quickly found that I couldn’t perform any of the work myself. My employees understood my physical limitations and were simply amazing. They always had my back, responded with a shoulder to lean on, and took directions while I sat in my air-conditioned truck. Ah, the benefits of air conditioning. It has been a lifesaver for me.
The spring turn was difficult, frustrating, and hot. I spent about two hours in the early morning giving instructions for the day, and then went home to rest. Overall, despite my physical challenges, everyone I interacted with throughout the season was very supportive. I am blessed with an incredible network of family, friends, colleagues, and customers. I am taking this opportunity to thank you all!
The spring turn concluded in July, and I decided not to do another crop for the rest of 2021. The next major decision I faced was whether to try again this year, but I’ll save that for a future column.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Bob Duke
Hi Stephen, I wish you well. I have been diagnosed with RRMS 5 years ago. I too am active. I researched and found the book by Dr. Terry Wahls called the Wahls Protocol. I was about to enroll in the Ocrevus trial, but decided to try the Wahls Protocol first. it is a diet of mostly greens and has several limitations- no sugar, no alcohol, and most importantly, no dairy at all. No cheese, no butter, etc. I am monitored by the MS neurology department from Stanford. The root cause of my MS was a leaky gut. I fixed the leaky gut and stopped all dairy, and all of my symptoms (blindness and light sensitivity, urinary issues) are gone. It took about 6 months of being on the diet. now the brain lesions are fewer on MRI and showing no signs of activity. I'm writing because the health care industry does not provide this information because it is "anecdotal", and there is no clinical trial evidence. However because there is no money to be made promoting healthy and restricted diet as a cure for MS, no one is talking about it except for those who are in the know. I wish you the best and hope that what has worked for me can work for others. It's not easy to change your diet, but I'm back to all of my activities and no longer fear the future. Good luck to all who may benefit from trying something truly safe and at least in my case and Dr. Terry Wahl's case has been highly effective.
Shirley Weinberger
I love how your handle everything! I too have MS, and know how hard it is to push forward, God is on our side so it will be O.K.
Stephen De Marzo
Good afternoon Shirley, I guess its all we can do. Very frustrating and depressing! I want ti help and add to the equation but we can't. Sad. Thanks for the comment!
Shirley Weinberger
I love how your handle everything!! I too have MS and its hard. But I keep doing as much as I can.
Roy Swanson
My wife had PPMS and was on Ocrevus from the minute it was approved. The drug made things worse and shortened her life. With each subsequent infusion, it took her body longer to recover. Docs dismissed this, they just want more data points on this ‘miracle drug’. Please dig into the research, especially if you are 50+., you may be surprised.
Stephen De Marzo
Hummmm! Ive read nothing but wonderful things. The Data looks great and I've have no recovery issues. but your comments are duly noted. Thanks!
Eileen
Yours was one of the few very, very real articles I have ever read. I so appreciated your non-sugar coating any of this. MS hits us all where we live and requires many hard real life decisions, including families, careers, finances. Thank you for this, please continue writing, you spoke for a lot of us out here.
Stephen De Marzo
Wow, that is a very observant response. Yes My stories are what I'm going through right now in real time. I wondered if they would be of any interest. Outstanding. These are very difficult decisions we are making! It's not fun.
Thanks for chiming in!
Darien Provence
Greetings Stephen. I just read you article,decision, decisions. I feel as if you are walking down a very similar path to the one I am on. I was diagnosed with PPMS back in early 2016. I moved from a very fast paced city environment out to a lovely slower paced rural area. I was initially on the discovery path because my left hand was getting numb and harder to use. After lots of tests and time I received my diagnosis. I started Ocrevus shortly thereafter and am very pleased. The numbness is still here, still progressing and still an issue but I’m still active, walking and enjoying all the rural requirements of Five acres. Keep your chin up, I hope your Ocrevus experience is as positive as mine has been. -Darien
Stephen De Marzo
Yes a similar path. I was in church one Sunday and the guest Pastor's sermon was about what our "take" out of our struggles should be, and what the Lord is telling us. Patience! Perhaps there is something to that sermon. makes me wonder. Very difficult. Perhaps there is something to "Take Time To Smell The Roses"! Be well!
Molly
I too have PPMS my third Ocrevus treatment will be August. I tolerated my first two infusions well. I am a 66 y.o retired female. Live in NW CT. I am active, not jogging active. In public I walk with a cane, but I do walk (blessing). I have high hopes I’ve plateaued. I enjoyed your column. It is nice to read other PPMS individuals coping mechanisms.
Thank you, look forward to your next
Stay positive. ;-)
Stephen De Marzo
Good afternoon Molly. sorry for the delay. I'm new to this stuff and did not know your comment was here. Ct is a beautiful state, I used to live in Stanford. Yes every thing has changed. Interestingly enough our reactions are very similar. I was in church one Sunday and the guest Pastor's sermon was about what our "take" out of our struggles should be, and what the Lord is telling us. Patience! Perhaps there is something to that sermon. makes me wonder. Be well.
Molly
Addendum; I also take generic Ampyra,dalfampridine. Which I feel has helped tremendously, otherwise my legs feel like cement. Twice a day, 7 am/7 pm. I am married, no children, great support family and friends…again a blessing., 1 dog and 1 cat!…
KAA
I have been diagnosed with PPMS. How did you pay for ocrevus?
Stephen De Marzo
Good Afternoon KAA, I am very fortunate that my wife has a very good health plan. That being said my doctors told me not to worry there are programs out there if you can't or they won't. Put some pressure on your Doctors or find another that will advocate for you!
Michael Hetue
Steven. I was diagnosed with PPMS just recently. I had a hard time walking as my right leg had no muscle control and would not function correctly. It took about 3 years for them to finally figure out what it was. I am using a walker to get around as i am unable to walk on my own. I had physical therapy as well but it did not help me. If you have access to a swimming pool or you can get therapy in a pool it will help you. Ocrevus will help you as i take it every 6 months. It will not correct or cure you of what you already have but it will keep it from getting worse. Good luck and keep the faith.
Stephen De Marzo
Yes to all of your comment! Thanks!
DAVID J TROPEANO
I also have PPMS and was diagnosed in 2000. I am now 76 years old and have been taking Ocrevus since it was first approved by the FDA. I'm glad to see that your doctor put you on it. As you know, it helps in delaying the progression of the disease. With you being just 30 years old don't give up hope. Researchers are getting close to finding the cause of MS, a remyelinating process, etc. Just know that changes will take place in your body. As of now there is nothing that the doctors can do to stop that. You just have to make adjustments in your lifestyle to cope with those changes: heat intolerance, fatigue, depression, etc.! Keep up the good fight and try to keep your mood swings in check. Good luck!
Stephen De Marzo
Yes mood swings and depression are a huge battle for me. We are men of a different era! We did, and can do everything. My mind is stuck in a 27 YO body. VerY difficult! Thanks for the comment!
Yolande Sander
I was an emergency nurse on and off helicopters and was diagnosed at the age of 53. It too felt as if my world came to an end.
Now, ten years later, I use a rollator and mobility scooter and am in full-time employment as a facilitator/moderator. Still in my specialized field and enjoying every minute. Thanks to my wonderful colleagues, friends and family members I still feel like a contributing citizen!
The moment of wheelchair dependency is getting closer, but as He has carried me so far, I know God will be with me then too. Luckily the human survival instinct is with us all. Chin up and enjoy life.