And The Journey Continues

This is the longest I've gone without blogging.  I'm not sure why.  Sometimes I'm waiting for news, i.e. the results of an MRI.  Sometimes I'm just not in the mood, or feeling that great and I want to wait for a better and happier day.  Sometimes I'm just busy.  I think it was a combination of all of those.  I do have lots of news - some good, some not so good.

The not so good first - I lost the bookkeeping job.  It just wasn't a good fit.  They wanted me to go to their office 35 miles south of here once a week at 8:15 AM and I did not want to do that.  They tried to accommodate me by giving me an extra monitor and letting me do the work remotely from home, but it resulted in it taking me longer to accomplish the tasks since it was fairly complex and thus hard to explain over the phone.  So that leaves me just with the techno tutoring as a source of income.

The other not so good news regards having stopped the Ampyra.  Stopping had a very negative effect on me.  My energy level plummeted and my right leg and foot became so weak that I could barely lift my foot and was constantly dragging my leg and stumbling.  I started declining social invitations right and left and spending a lot of time on my couch.  Finally, about a week ago, I emailed my MS doctor out of desperation and asked for his opinion regarding starting the pill again.  I wanted to make sure that I wasn't risking making everything even worse.  I should explain that Ampyra is not a disease modifying drug - it does not change the course of the disease.  It just is supposed to help with the symptoms, energy and walking ability.  It is a time release tablet that you take every 12 hours.  My doctor agreed I should try it again, but suggested I keep a detailed daily log of how I do.  So, I started it on Friday, May 11th.  Luckily I have a 2 month supply left from before.  I almost immediately saw an improvement - I even had some moments where I didn't need to use my cane.  But then I went back to exercise class on Tuesday (I hadn't been for a few months because of how I'd been feeling) and have been having problems with my leg again.  Not as bad as before however.  I think I'm going to have to do exercises on my own at home.  In any case, I'm remaining positive and hopeful.  I think this pill is like some antibiotics - you have to take rest periods.  In the meantime, I'm still waiting for the disease modifying drug Biogen BG-12 to be approved by the FDA.  They're saying it's the most exciting drug they've ever seen for MS.

I'm loving my Techno Tutoring job.  I have about 10 regular private clients at the Residence in addition to my 4 monthly Question and Answer sessions and basic computer classes where I'm paid by the Residence.  My clients are all becoming like family to me.  One of them, a former doctor, is always emailing me articles on developments in MS.  Their ages range from mid 80s to 92.  I also have about 5 regular clients outside the Residence. I'm getting ready to look for another similar type facility in this area.  And I've just added another income stream - remote computer teaching and troubleshooting.  One of my high school classmates lives in L.A. and I've been trying to help him via email.  I decided one day to use with him the remote software I'd been using in the bookkeeping job that allows me to see his desktop and move his cursor.  It worked perfectly!  He is now a regular client.  I will soon be sending out a new flyer announcing this new capability and asking for referrals anywhere in the country - or the world, for that matter.  Thank God for the internet!  I'm offering this to my regular clients, too, for whenever they have a specific problem as opposed to needing to learn how to do something.  I will charge them just for the amount of time we spend on the phone.

One of my high school classmates lives in Palm Springs, CA and he and I put together a wonderful mini reunion there the last weekend in April.  I will post a separate blog I wrote for our classmates about that along with a link to the photos I took.  He and his partner collect glass works of art - their pieces are on loan to museums all over the world.  They have 200 pieces in their home and their own wing in the Palm Springs museum.  I was a little apprehensive as to how I would do in the heat, but even though it got to 105 degrees, I did fine.  My friend had told me that dry heat is different and luckily he was right.  Meanwhile we are all working in earnest on planning our big 50th reunion next June.  I'm in charge of keeping a master database and welcoming in all the "new" classmates as we find them.  I remember two years ago when my school friend Lyn Lederman found me on Facebook - little did we know what that would lead to.  Since then we've found over 250 of our classmates and I've become very close friends with a lot of them.  Some of them I didn't even know in Great Neck.  It's been wonderful.

Another piece of good news - I had a new set of MRIs done last month and there is no new activity, no new lesions.  That is very good news indeed.  I will be seeing my doctor on June 5th.  The next day I leave for Seattle.  My two grandsons, Cameron and Devon, will be graduating - one from high school and the other from middle school.  I'm really looking forward to spending some time with my family up there.

And speaking of family, my sister Trish and her boyfriend Stan each reached a milestone this year - Trish turned 70 (in August) and Stan turned 80.  They had a joint milestone birthday party and I was thrilled to see photos of our parents going back to their wedding day and of us as youngsters.  I hadn't seen those photos in a very long time.

Carla and I have decided not to go to France this Fall.  She because of financial considerations and myself because of finances and my health.  Unless things really improve, I just do not see how I could do a trip like that.  I'm very disappointed, but the older I get, the more I realize you just cannot do everything.  I'm hoping maybe I could go the following year - maybe with Brenda (hey Brenda, come to France with me!).

That pretty much sums up what I have been doing the past 4 months.  I'm trying to figure out the best way to manage my health, I'm building up a new business, I'm working on my high school reunion.  The nutrition program that I started in December has turned out to be very beneficial as well.  I feel much stronger and I can tell that my body is more toned and functions better.  Trish and Stan have decided to try it too, not for nutrition alone like I am doing, but also for weight loss, and after just a month they have each lost over 6 lbs and several inches.

I will try to post more regularly.  One of the benefits of a blog, in addition to being able to update friends and loved ones around the world, is to then hear their news.  I look forward to hearing from a lot of you.  In the meantime, thanks for caring and always being there for me.  It's been quite a journey and it's not over yet!