My MS’ MVA


I was diagnosed with MS three years ago. I’m starting to learn more about MS everyday and I hope to share my experiences with the over two million people who also have MS. My hope is to use a concept from Seth Godin of reaching the minimum viable audience. We are all different, but we share the same disease. 

 
Snowflake

The frustrating aspect of MS is that everybody has different symptoms. This is why it is deemed a snowflake disease. Some people with MS are in wheelchairs and some can walk normally. I can walk, but MS causes me to loose my balance and my temper. This happens infrequently and is called an MS episode.  I take an MS drug called Ocrevus .  It prevents further advances of the disease and works for me!  Unfortunately there isn’t a cure yet. The drug is administered via an infusion once every six months.  It has a 45% effective rate per the FDA. Once I sat next to a person at the infusion center who was on the same drug and angrily shared with me that he didn’t experience similar results.  He must have been in the 55% group :(  

 
 

Social media writes numerous articles on MS.  Most of the articles are sensational to earn attention and clicks.  My friends and family read these articles and ask me how I’m feeling.  They are just concerned and they are surprised by my answer of  “I feel great!”.  At the end of the day I prefer their love and attention.  My wife drives me to my doctor appointments so she can hear ideas from an expert instead of from he internet.  My MS Dr is knowledgeable and calm.  I don’t possess either trait.


I also walk and talk with my longtime college friend. My good memories are still 45%.....she asks a lot of good questions to make sure I’m still above 45❤️






Acceptance

I have started to accept my MS.  When I fill out a new job application I need to check the disability box. My acceptance also includes realizing that there isn’t a cure and that I need to be careful walking.   The only test I accept for  my MS is the MRI that shows how my brain and spinal column looks.   A recent MRI was stable!  Finally my balance remains poor and I still can’t drive a car.  My family shares that I was always a bad driver.  There are several daily routines my Dr asks me to follow.  I now work out on the Elliptical every morning and I take gummy D3 vitamins.  


Thanks for your concern and thoughts.   I hope other MS friends will share their stories.  They will be different than mine.  I’ll share again after my next infusion.  


Comments

Post a Comment

Popular posts from this blog

Inorganic

Image
Our industry has always looked down on Wall Street’s recruiting checks.  Last week there were numerous announcements that independent firms were offering advisors money to purchase their practice.  The term for these transactions is inorganic growth.  This week we will look at why these transactions are the new rage and examine if they are better than the old Wall Street checks. Wempy Popeye and financial advisors fall for the “I’ll gladly pay pay you tomorrow for a Hamburger today” pitch.  Unfortunately Popeye and and most financial advisors provide their hamburger but seldomly get paid what the firms and Wimpy promise .  Why?  The advisors need the cash and Popeye is gullible.  On Wall Street the deals adjusted when the advisors changed firms looking for a new deal every five to eight years.  The recent Luminous departure shows that the advisory contracts need to be adjusted.  The new contracts are written by experienced firms and lawyers to prevent serial departures. 
Read more

Stop Judging

Image
I have known that I have MS for over four years.  My doctors believe I have had MS for over twenty years.  Initially, When I received this diagnosis  I was very opinionated when I saw disable people. I assumed the worst. As a currently disabled person I can educate and warn you regarding things you shouldn’t say to me or disabled people..  This blog will educate on my disability. The places it manifests itself and how you can react and support me and other disabled people. The three items are: 1.) Needing a walker 2.) Government disability  3.) Falling MS causes me to loose my balance and fall.  The walker prevents this reality  I look at walkers as being as sign of old age,  I was incorrect and a good walker is an aid!  With a walker I fall less often.  I might look old, but I am OLD! Our government provides support to the millions of MS patients in the US.  Support is through Social Security and must be approved.  I am approved. The service can be cancelled if i get a full time job.
Read more

Summer Changes

Image
  Our summer is almost over,  What did we learn during all of our downtime?   I will summarize all of my observations and share my plans on what I will implement when I return to my office.  I discovered/ learned 6 items on my beech lounging, morning walks and social media tolling that I’ll share.  Hope they help.  My first and easiest change was my eye glasses.  Many of my friend asked it was trying to look like Elton.  I wasn’t…. The next three changes were business related. The changes will be voted on by my colleagues.  Steve Jobs of solving client problems the client didn’t know they had will be our guiding light.  I tried to change a few items. The obvious item what I changed was my eye  glasses.  The other areas were business related and I wanted wanted to be in control of my changes. The first change s our business’s model.  It has taken years to realize that I can’t beat thr market index.  Growing up on Wall Street this change was difficult.   Alpha is difficult to achieve an
Read more