A Typical Day with Parkinson’s

Re-reading my April 29 post, it doesn’t really describe how I feel about “Living with Parkinsons” at this point. The bottom line is that it frustrating and scary. It’s frustrating in that it consumes my thoughts a huge percentage of the time. For example, every time I prepare to stand up, I have to “cross check” my body to make sure it’s working well enough to stand up. IF I’m sitting at the computer and accidently click the mouse, I have to be certain that no harm was done. If I schedule myself to go out with friends I have to make sure I have all the meds, etc. that I need including hiking cans and portable chair. Longer travel trips I have to think about waiting times in airports, delays, and time zone changes. I could keep this list growing but I won’t for now.

So, what is it like to be in my shoes and what do I mean when I say “I feel good” Generally I wake somewhat stiff and my stride is short. I go to the bathroom and take my pills I can usually feel my body soften as they kick in. I do some stretches and usually try to get dressed as quickly as I’m able to.

Then I have difficult decisions to make. I know I’m at my best mentally and physically but especially mentally in the morning, So do I do my thinking work or exercise. Since much of the exercise is timed meetings or appointments they usually win (and therefore the frustration of not getting things done.)

When I’m home, again I have to juggle mental and physical. Ron usually wants to take an afternoon or walk or I might have yoga or boxing classes, etc. Often I find myself just staring at the computer because I just can’t process what I need to be doing. Even though I’m retired I still have projects want to do.

Evenings are the most variable and that makes me afraid to go out, especially if it’s past 9 :00 to return. Ron and I used to have a signal that if I said “it’s time to go” that means “My meds are wearing off and I must get to the car and home ASAP or I won’t be able to walk to the car” It still works but it takes a lot more prodding. I rarely sleep through the night. Sometimes, but rarely, I wake up and go back to sleep. More often I get up and go to the bathroom and take a sinemet if it’s after 2:30a. If I wake up in the 4:00 hour I’ll often read or turn the TV on.

So at the moment – I would say life is at an equilibrium. I’m in a livable amount of discomfort and actually I’m doing things that I haven’t been able to do for the last 4-6 years. I’m helping more in the kitchen and with chores. I can’t remember when Ron took that over but I think it was after the trip to Krakow, Prague, Vienna and Budapest but before Nava was born. So it was late 2014, early 2015. Among other accomplishments of late – I’ve been able to lift my feet higher at exercise classes and I can finally walk close to a mile without much pain and stand for close to an hour. I even played pickleball a few times this winter. This may sound trivial but these are huge accomplishments from where I was. My two biggest fears are 1. What happens when this comes crashing down on me and 2. What happens if and when Ron has a medical emergency. He’s been great with me (most of the time) but I hardly be there for him (when my meds are low I can hardly talk on the phone). I guess these will become points for the next blog entry.

Living with Parkinson’s April 2019

This is a long overdue update on my “journey with Parkinson’s.” As previously mentioned every case is different. Dr. Barbano stated that progression is usually linear but at the moment my slope is approaching zero and in reality I’m doing much better than definitely a year and up to several years ago in the motor skills, although probably a little (but not much) worse on non-motor symptoms.

So I think this improvement is due to two great neuro physical therapists at Cayuga Med, along with Marla and Jessica in the Valencia Shores gym and Renee and Peggy for therapeutic massage and the addition of amantadine to my prescriptions . (Also Rock Steady Boxing and Pound it Out drumming and various water weight classes) In the past few weeks I’ve been able to cook a bit (I made two great Passover deserts) and help around the house a bit more. I forget how long ago Ron took over the kitchen – it was before Jonathan’s wedding so it’s been 4-5 years. Last year I wasn’t able to do any setup or cleanup for my Chanukah or Pi parties, I almost didn’t do them this year (Chanukah was just us and three others) but I was able to “do my part” to help with the Pi party this year. I even played pickleball a few times this past winter and I was able to meet new people without having to explain my condition (either dyskinesia’s or walking issues). Marianne said it was about 3 months after I met her that she heard I had Parkinson’s.

 But my Parkinson’s is very time dependent and I guess I should try to plan for the worst. I take the Sinemet 25/100 every three hours, even when I wake in the middle of the night. For about a half hour before and after I take the meds, I slow down – both thinking and movement. Some days and times are better than others, mornings are usually better than evenings. I was nervous about our theater subscriptions that end 10-10:30 but so far, so good – I just try to get an aisle seat so I can easily get up if I panic. When I get up in the middle of the night, I often use the walker to get to the bathroom and while over the past few years I used my hiking sticks, walker or even a wheelchair in public,, I’m generally just carrying (and later in the day using) the hiking sticks. I can walk between 1/2 and 1 mile without pain in my center back. When the pain starts, I sit and stretch for a few minutes and then keep going . I usually request a wheelchair at airports but cancel it if I feel good when I get off the plane.

The non-motor problems bother me more. Maybe I read too much but I’m constantly second guessing my thinking so some of this may or may not be “real” but it’s real to me. I have to think extra hard to remember things, I try to make notes but when I can but when the meds are low, I can’t read my writing no matter how hard I try. I forget where I leave things and I know I’ll but something somewhere temporarily, telling myself I’ll get back to it. This is especially troublesome if it’s a computer file. (An unplanned project for this summer is to reorganize my files across cloud and regular drives)

We are constantly busy. The exercise schedule takes a lot of our time. In NY we are out M-F mornings and Ron is out a few nights and in FL I have water weights 6 mornings a week and I have afternoon classes three days a week and Ron has a few evenings too. That leaves little time for hobbies and other recreations like cards, mahjong, etc. It’s frustrating.

So please be patient if I don’t get things done as fast as I should – I try to do as much volunteer work as I can but I try not to commit to time sensitive tasks. I hardly sleep more than 5 hours a night and I often wake up very stiff but in general, I’m in a good place right now. We did an excessive amount of traveling from August 2017 to October 2018 but this year we are just going to a Parkinson’s conference in Japan in June and a cruise to Key West and Havana in December. We have a cruise out of London in August 2020. I’m planning to just bring the sticks to Japan – hopefully it will work for me.

My Story

Categories: Family Parkinsons

I have had a movement disorder issue since mid-2004. It was ultimately diagnosed as Parkinson’s Disease. Parkinson’s Disease is diagnosed by observation of symptoms and their reaction to dopamine. While most often thought of as tremors or jerky movement, in general it is a slowing of the body due to lack of dopamine and various medicines and other procedures are implemented to increase dopamine. In my opinion education and logical thinking are the key to surviving this road block in our life.

Education includes understanding your own situation, making sure all of your medical professionals understand your situation, seeing a Movement Disorder Specialist as opposed to a general neurologist and learning about what research is being done and participating in clinical trials and join a support group to know you aren’t alone.[more..]

Here is my history with Parkinson’s. My journey with Parkinson’s started the year my son 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. 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. 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.

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). So I was pretty stable for many years until we took a trip to Europe and walked about 35 miles in 12 days (most in the first three). 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.

With every pain, you must evaluate if it is from Parkinson’s or not. In other words does the pain reduce when the medicines are at their peak time. So for the past two years I’ve been fighting the pain including exercise, massage, physical therapy (she specializes in neurological cases). I’ve tried acupuncture and CPD oil (no THC) with mixed results along with steroid injections which didn’t do much. I use a high end chiropractor who helps me review my situation and where to turn to next for help. I recently started Rock Steady Boxing and Pound it Out which are both exercise classes for people with Parkinson’s. These have increased my self confidence a bit and the boxing class (at least the one in NY) has me lifting my legs more, etc. The Pound It Out class (drumming on Pilates balls) helps my upper body strength. The second key to Parkinson’s is to KEEP MOVING or in other words USE IT OR LOSE IT.

As I prepare this page in 2018, I am 60 years old, married for 38 years. Both my children are married and my daughter has two daughters,. I hope my entries are helpful to you if you are fighting Parkinson’s Disease or Caring for someone with this disease.