Living with Parkinson’s – social scene

I started this as a post on Patients Like Me, a Parkinson’s support forum, but I felt it worth sharing in general too.

It’s been about two weeks now that I’ve been feeling somewhat better (after over two years of pain which started on an extended walking tour in Eastern Europe.) Of course with less back pain I still need to deal with the stiffness cycles from PD.    (My sinemet lasts 2 1/2 to 3 hours depending on brand. )

I’ve had a great PT and chiropractor helping me and I really think acupuncture made the final hurdle possible and I plan to continue that as I move south for the winter .  I know, however, that the exercises must continue regularly. The problem is I have a fear of getting better.   For example I’ll walk 3/4 mile and be afraid that I can’t get home.  Actually I did have to have hubby get car one day because I felt I was in too much pain to walk back.  But I wasn’t sure myself if it was real or just panic.

I’m also afraid sometimes of going out with friends and not my husband and having a breakdown if a pill doesn’t kick in correctly. In Florida I’m less dependent on my husband for transportation.  Typically I do water weights and/or yoga in the morning plus the recombant bike in the gym.  I’ll probably play cards at least one afternoon a week and then misc events around the area.  I might try Rock Steady Boxing.

I’ve had my share of dinners out with dyskenisa but I worry about getting panic attacks in public too.  Early on I had a deal with hubby that if I said “It’s time to go”. It meant NOW. NO QUESTIONS ASKED. but now he often pushes back and says “relax and get over it, you know you meds will kick in”.

I’ve spent my whole life feeling socially awkward in one way or another, I just want to relax, feel accepted by my peers and have fun.

Living with Parkinson’s and Spine Degeneration

As I write this,  October 2017, I have had Parkinson’s approximately 14 years.  I plan to incorporate some earlier writing into this blog, but at this point this will serve as a quick catch up.

This picture was taken on August 9.  That was one of my best days in recent times.  The picture was taken by my college apartment-mate, Debbi Berke, while we were in Denmark on a Baltic Cruise.  The reason I feel I look good in this photo is that I had had two acupuncture treatments, that morning and the day before and I felt more “upright” and alert as well as less pain.

My journy with Parkinson’s started the year Jonathan graduated high school, 2004. And therefore, it’s been Ron’s and my journey since the kids were largely out of the house and have not seen the daily battles with this disease.   It’s relatively easy to only go out in public when you are “good” but I think both Debbi and I learned a lot about “sharing” the daily living issues of this disease when she visited for a week in June and then the two weeks on the cruise.

Very briefly, In 2004 I started with knee pain, Ron also notice my right arm not swinging.  By the end of the summer the pain stopped but my walking became more and more difficult.  In August 2005 I was told Parkinson’s or MS but then a MRI showed spinal stenosis and I had a laminectomy C4-C7 (no fusion).  Recovered partially, diagnosed Parkinson’s January 2007.

The key to living with Parkinson’s is education and understanding your body but I will cover that more later.  I participate in several support groups. (By the way – I’m still trying to reach my goal of 60 donations for my upcoming 60th birthday via the Boca Raton Moving Day event. Moving Day Boca 2017)

My movement disorder specialist keeps telling me that “I look great” and take relatively low amounts of medication but without that medication I don’t walk or move AND I don’t think well because Parkinson’s is a slowing of the whole body.  Very briefly the three main medicines are Sinemet which is artificial dopamine, Requip which helps the  body make more of its own dopamine and Azilect which helps the body  use what dopamine that is there more efficiently.  Recently I’ve had to stop the Azilect because it seems to over react with one of my pain medications and I can tell that the sinemet doesn’t last as long without the Azilect.

Thanks to a recommendation by my friends Kathy and Kevin Murphy, I’ve been using hiking sticks for I don’t remember how long as a walking aid when I get tired.  This works better than a cane because it reminds me to stand straighter (and my physical therapist agrees with this).  Two years ago however we took a trip to Europe and walked way more than we probably should have 3-7 miles a day over a 12 day trip.  After this I started with severe back pain. I had a discectomy L2-3 July 2016 but problems at L3-4 and possibly sciatic region were not addressed and the pain persists.

While for many years I lived by a aggressive exercise routine, I have had to reduce it significantly.  I generally wake up with no pain , but the minute I put my feet on the ground it starts,   If I have to stand for any given amount of time the pain is horrible and I can barely walk a quarter mile.  I am working hard with physical therapy to reverse this but it’s getting discouraging.  I’m also trying acupuncture with a local MD.  I don’t want to look at surgery but any suggestions are appreciated.  Pain injections (Steroid) have not helped but 10mg a day of prednisone does seem to help.

I’m glad to get this much done, I’ve been wanting to do this for a while, I hope to add more later.

G