Living With Parkinson’s – Improvement at least for now.

You often hear the line “when you meet one person with Parkinson’s, you’ve met one person with Parkinson’s” . In other words every case is different.   For many however, issues with the spine seem to go together with PD.   I’ve had severe back pain since we took the land trip to Europe (Krakow, Prague, Vienna, Budapest) 3 years ago.

I’ve done PT and injections and no relief. So I had surgery on L2-L3 July 2016. The doctor debated about L4-L5 but opted not to do it and of course he did half the surgery and I had half the result. I spent the summer of 2017 in constant pain, I had four injections in four different spots and I liked this doctor a lot better than the one the previous summer but still no relief. I worked with John Mayer, a neuro physical therapist and he helped strength but towards the end of our time together we realized I was losing endurance.   Winter 2018 started out ok but got worse as time went on although I tried to keep to my routines.   Actually the problem in early 2018 was that the medicines were causing dyskinesia (uncontrollable movement) and that was exhausting me.

When we returned to Corning in Spring 2018, I saw Dr Barabano and he added Amantadine to my meds.   While there are some potential side effect problems to watch for but otherwise it’s been a miracle drug. The dyskinesis is gone but the back pain remained. I decided to try PT again but John left and Abby took his place and she is great.   She’s said my main problem is tightness in the hip flexors and we’re working om exercises to fix that but also I went to a masseuse that David Kartzman (chiropractor) recommended. I don’t know what Renee did but after the massage on June 19 I’ve been feeling a lot better. I still wake up in significant pain but it goes away usually by mid-morning and while I still have some Parkinson stiffness, overall I’ve been feeling pretty good. I don’t know exactly what happened, but I’m just going to enjoy it. I’m also going to keep up with the exercises to try to improve even more.

Living Day by Day

 

So it was almost four years ago that we lost our office building and retired.   I don’t know where the time goes.   We’ve in our third summer with the Rock Hill family retreat home and we’ve had three winters in Lake Worth. Ilene and Keegan have been married for 10 years; Jonathan and Jessica are celebrating their second anniversary soon and they just purchased a home in the Bronx. Nava is 3 years old and learning new things every day and Orli is 5 months old, born on her father’s birthday in February.

So how do I spend my time. It seems projects just never get done. My biggest goal is to reduce clutter by scanning in old photos. It’s a huge project and having Parkinson’s just makes it slower because I can only get work done when the drugs are “On”. I spend a lot of time exercising. This includes water weights, yoga, boxing, biking, etc. I spent so much time with various exercises last winter that I really didn’t have time to join a card game or socialize. I did take Bridge lessons so I hope to play that more in the next year as well as mahjong and canasta.   Ron was getting board for a while when some of the SCORE projects weren’t active but he plays tennis, racquetball and pickleball – usually at least two of them in any given day. So as long as he doesn’t have an injury, he’s happy. I’d love for him to learn bridge too but so far he’s resisting.

So we continue day by day and hopefully we will continue to have a good life for many years to come and when one project finishes, there always seems to be a new one behind it. Living with Parkinson’s, it’s hard to stay upbeat and excited about life.   But I know that’s exactly what I need to be doing.

Thoughts on turning 60

So this week is my birthday (February 21).  As is  “tradition”  on the Helman/Scherr sides of my family, I used to share it my Uncles Bob and Larry and now I share it with Larry’s great-granddaughter Greta who just turned three.  I really wanted to make a big deal about this birthday for several reasons but life is slowing me down.

You may have noticed that while I try to get my holiday letters out by Thanksgiving, I never got it done this year.   It’s hard to explain.   Parkinson’s steals my time.  Parkinson’s is not just tremors, it’s a slowing of the whole body.  My basic meds last about  2 1/2 to 3  hours which means I am constantly thinking about timing, etc. and since this started in 2004 and   it is a degenerative disease, it is starting to effect my everyday life.  There are times  now that the meds give out suddenly and I just have to wait. Sometimes this causes a  panic attack.  But the net result is fewer hours each day to do what I want.  On top of that some of the good hours are taken up by exercise -water weights,  yoga, boxing and drumming.

The key to living with Parkinson’s, in my opinion, is education.  I was told early on that in general one does not die from Parkinson’s but it’s not always easy to live with either.  I keep literature on hand and I do feel good to be able to share this with people.  I work with three support groups  – two in New York and one in Florida.  If you don’t hear from me,  please call me and ask me  how I am.  I might need some surgical procedure in the next year to control this  better and it’s hard because Ron isn’t as tuned in and the kids have been out of the house and have their own lives and just don’t ask.  My friend Debbi and my Aunt Estelle, spent a few weeks with me this past year and  while I hate imposing  on  people, it was good for me to learn how to share my problems with someone and for them to learn what I’m dealing with.   I think of my Aunt Beverly and I don’t know how she lived on a respirator with ALS for seven years!!

Meanwhile Ron still insists that we travel.  I am terrified of having an emergency away from home but we are planning on Israel, Greece and Canada for trips between now and December.
We welcomed our new granddaughter, Orli Bailey this month.   Ilene gave birth to her on Keegan’s birthday, February 2 and Nava is happy to be a big sister.

So as my childhood and college friends turn 60 this year with me, I  hope that you all have good health and please keep in touch.  I need family and friends to keep me active. .. What more can I say….

With love,

Gloria

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Ilene’s Speech from Orli’s Naming Ceremony

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”

― Martin Luther King Jr.A Testament of Hope: The Essential Writings and Speeches

Thank you all for coming to help us welcome Orli in to our lives and community.

Over the last week, we’ve been reflecting on how much this little life really wanted to be here in this world. From conception (which is a story, we’ll spare you) to birth (which was VERY fast…. some of you may have heard, we were only at the hospital 10 minutes before she was born), Orli clearly wanted to be here. In a world that seems even more volatile than usual- politically, financially, and environmentally…why would this little life want to be here so badly?

With all of that in mind, we think by naming her Orli, which means “my light”,  and Lev, which means “heart”, is fitting. Orli is named after Ilene’s paternal grandfather, whose name was Norbert, though we called him Opa, which means grandfather in German. Opa, who passed away in 2016, grew up in World War II Germany and had many dark moments in his life, including losing most of his family in the Holocaust, losing his wife at a very young age to cancer and his oldest son to cancer a few years ago. One would think after all of this loss, he would be a person who carried some sort of sadness on his shoulders, but anyone who met Opa would only use positive words to describe him.

While we used the O from Opa for Orli’s name, it is interesting to note, Norbert actually has an element of light to it as well. Norbert in German means “shining from the north” and that’s exactly the attitude Opa brought to life. In his 94 years, his bright blue eyes continued to shine and find happiness whether it was with one of his girlfriends, traveling around the world, listening to classical music or on the tennis court. Orli’s middle name, Lev, also reflects how large a heart Opa had. He was very intune with politics and displayed a lot of passion for current events, education, and life in general.

So why would our little Orli Lev want to join this world so badly? Because she will bring light to an otherwise unstable world just as Opa did. To us, as family, she already has provided perspective and light. This light will continue to reflect and provide warmth to her friends she will meet throughout her life and to this thriving community. And then she will continue to spread her light to the world. We have a feeling Orli will continue to shine her light and do big things. However lights can not shine without fuel. We call on you as a community to help us provide the tools and opportunities to allow our daughters, especially Orli, to continue to feel empowered and shine.

Ilene R Friedman 2/10/2018

Our new granddaughter and more

Our daughter Ilene Friedman and her husband Keegan Bailey celebrate the arrival of their second daughter, Orli Lev Bailey. She was born Friday February 2,her father’s birthday, at about 3:30 in the afternoon after a very brief labor.   She weighed in at 7lb 5oz.

So when I heard Orli’s name and especially after seeing her, at less than 24 hours old. I can picture these two sisters as beautiful strong women.   Nava is strong and needs to get her own way.   She and her Uncle Jonathan have similar personalities. I see her as being independent and creative. Of course it will take time to truly learn Orli’s personality but on their “we are expecting” notice, Ilene and Keegan used the yoga warier pose. I see Orli as the leader of the warriors, a team player, but a strong leader. The girl’s names mean Beauty and Light of my Heart respectfully and I think they will fill those “shoes” perfectly.

So, as a grandparent, I have mixed emotions. Ron and I are about to turn 60 and we have two young grandchildren. I’ve had Parkinson’s for 14 years, Ron has had three bouts with cancer since 1980, statistically will we live to see their bat mitzvah’s, their weddings. My grandparents lived to see both my children but Ron’s Dad was the last one living of our parents and he passed in 2016, after Nava was born (2015) but before Jonathan and Jessica’s wedding (2016).

I’m starting to have more problems keeping my body going with Parkinson’s. Between medicine doses I sometimes slow down “to a snails pace”.   When this happens I often get annoyed and frustrated and I’d rather not have people see me. I’m looking into solutions but it’s difficult. I try to plan my day around these ups and downs. I rate tasks as to what I can do at what level of “on” and try to schedule accordingly but the net result is that I get less than half the productivity that I used to have and I have to watch things like paying bills to make sure they are done.

I am doing a lot of exercise including Rock Steady Boxing and Pound It Out drumming and Ron is playing tennis, racquetball and pickleball. My frustration is that other than bridge lessons, I don’t have time for socializing and even when I do, I get nervous about the meds wearing off

So where I normally don’t draw attention to myself. I’m going to enjoy my 60th birthday. Mine is Feb 21 and Ron’s is July 3.   I have private plans for Feb 21 and 22 but I’d dedicating my third annual Pi Party on March 17 to all my high school and college friends turning 60. Since I have problems helping with cleanup, etc.. I don’t want the Pi Day party to be overwhelming but please stop by and say hi and make a donation to one of my favorite charities – Parkinson’s Foundation, Michael J Fox, Hadassah if you want.

I can’t wait to teach new skills to my granddaughters. We bought Nava a 3yr old’s real digital camera and while she has to learn how to frame the picture and not move the camera, she understood the buttons easily from the start.

I’ve been enjoying “playing” with photography. I exhibited in our complex last year and I will do the photo club show at the end of this month.   This past summer and fall I collected pictures of our apple trees and made a picture book called “PopPop Makes Applesauce” featuring Nava.   For the photo show, I’m doing fruit, vegetable and nut flowers and their end products.   My biggest fear is losing the ability to do things like this.

Ron insists on traveling although it scares me more and more. I take a wheelchair for using at museums and other long walks. We had a wonderful Baltic Cruise last year with Debbi Berke and Aunt Estelle and this year our plans include Israel, a NJ to Quebec cruise and Venice to Greece.

I hope to fix up this blog site and post some family history, etc. here. I you have anything to contribute, please advise.

With love from

Gloria and (of course) Ron Friedman

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

Where are Ron and Gloria TODAY?

Hello

Hello

How are you, WHERE ARE YOU

That conversation seems to repeat with almost every call.  If you asked me 2-3 years ago if I’d be splitting my time between not two, but three houses and retired at 58 I would have thought you crazy, but that’s  been our life the past two years, going between homes in Caton, NY, Emerald Green, Rock Hill, NY and Valencia Shores, Lake Worth, FL.

2016 In Review

In 2016 we learned a new term, snowflakes.   Unlike snowbirds who migrate south for the winter; snowflakes never stay long in one place. And so every few weeks we were sleeping on essentially the same mattress, but at different homes. We’ve managed to work our travels around theater subscriptions and other shows, support group meetings and other events.

We started the year with a cruise to the Costa Rica, Panama and Columbia. But then Gloria starting having severe back pain, which resulted in surgery July 21. However, I still have some inflammation and pain, but just since November, I’ve been able to “walk normally”.   I had a good physical therapist and I am trying to exercise by doing at least one type of exercise (walk, bike, yoga and water weights) every day.

In April, Ilene and Keegan hosted a “we survived one year of parenting” party. Since then Nava has made a wonderful transition to the toddler world. She now has a large vocabulary, both spoken and understood, and she follows instructions and loves to emulate her parents (i.e. trying to do a handstand).

In June, unfortunately, Ron’s dad, Norbert Friedman, passed away. He was 94 ½ and both a holocaust survivor and WWII veteran. See my website for more information and tributes.

In July we had Jessica’s bridal shower and in August Ron and Jonathan jumped out of a “perfectly good” airplane to celebrate Jonathan’s 30th birthday.

Labor Day weekend we celebrated Jonathan and Jessica’s wedding (after 8 years of dating).   It was a wonderful three day event at The Kaaterskill, near Hunter Mountain in the northern Catskills.

Since them we did a week in Portland and Seattle, a 3 day cruise, one week in Phoenix, visiting in NYC and NJ and back and forth between the houses.

We still are looking for people to join us on a Southern Caribbean cruise for 14 days in January, Amsterdam to St Petersburg for 12 days in August and 4 days to Cozumel in December. Call or see my website for details.   And of course to visit us at any of our locations.

Check my website www.gsfriedman.com for photos, travel information about past and future trips and my new blog which will have information about living in 55+ communities and more.