The year 2021 is almost done

While I’d love to say “time flies when you are having fun.”, that’s not the reason that I haven’t done a blog post since April 2020.   I’ve written many  articles in my head, they just don’t get down on paper.  There are  a variety of reasons why including Parkinsons.  In general, I’d say my Parkinson’s has been stable for the past 18 months but I do have some neurological symptoms that appeared to be getting worse but have recently improved. Sometimes the fear of getting worse does hold me back. 

Whenever I start a task, I think, am I in an A,B, or C place.  If I’m very comfortable, little stiffness, thinking straight, I tackle harder projects like reading an instruction manual, moving files on the computer, anything creative and things that require mobility.  I don’t sleep more than 5-6 hours so between that and Parkinson’s medicine cycles, my “A” time has to be planned carefully.   If I’m not quite at an “A” level , I try to do tasks that are standardized like paying bills, or simple research.  When I’m at a “C” time, I usually pedal the stationary bike, read a book or play computer games until I feel better.  Even as I’m writing this I was an “A” moving towards “B” ; my right ring finger is feeling tight and triggering, so I have to correct lots of typos. One word of advice is to always have the keyboard at your optimum height (I believe this is 25-27 inches from the floor.)    I have considered the possibility of hiring a typist so that I can get all the documentation and photography that I want to do, done.  I think I talk faster than I now type.

We would have never expected a pandemic in our time but while we want to comply, “sheltering in place” is exactly what a Person with Parkinson’s cannot do.  So I continue to take live exercise classes,  physical therapy, water exercise and outdoor bicycling as much as I can but I will use Zoom when necessary.

So my personal goal is to get my blog caught up.  Parkinson’s is such a strange disease and I want to tell whomever is interested about my unique case.  My husband and I never dreamed that I would be as “good” as I am now, even 10 years ago.   I keep thinking of more aspects of Parkinsons that I want to write about but I will them to another day and get to another “A” task before my 6:30pm water aerobics class.   I’d like to move the blog entries on www.gsfriedman.com to www.pdsupportgroup.com so watch both sites for more.

My goal is to AXE Parkinson’s (Advocate, Exercise, Education).

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End of Year Summary

It’s been an interesting year.  On one hand I say that my life is in a state of equilibrium at the moment but I continue to be frustrated with my body and it’s aches and pains.  I guess in one respect things are good – my friends have stiffness, aches and pain and at least I have an excuse for it.  But I’m learning that Parkinson’s is unlike almost any other “normal” illness.

For Parkinson’s – we deal with multiple symptoms at the same time and these can be neurological, physical and psychological (but I must add for one person’s sake – it is in no way referred to as a mental illness and it can be inslulting and degrading when it’s hard enough to go out in public every day).  It is a slowing of the entire body including thinking, logic and vision.  Unlike almost every other calamity, except perhaps epilepsy, that  will always have to take medicine and more importantly the dosages CANNOT be missed.  The dosages have about a three hour half-life and need to be replenished.  And  while   people recover from bouts of cancer, heart disease, bad knees, etc.,  there is no recovery from Parkinson’s, only working at it 24/7 to live as well as we can.  (I don’t know how the PT’s  that work with Parkinson’s patients knowing that they can’t make them better, just stronger to deal with the pains, etc.

So, between good doctors, neuro-physical therapist, trainers, etc. I’m getting around pretty well.  I still start twisting internally when I stand at kitchen height counter, so I can only do a limited amount of cooking but when the meds are working I am flexible and pain free.     I do water weights up to six days a week and when I feel really good or the weather prevents swimming, I’ll do an inside class.  I also box twice a week and do a drumming and balance class (2 hours total).  But  I’ve been feeling well enough that I’ve taken on responsibility for Hadassah and for some training on computers.  Sometimes it seems overwhelming but I enjoy it.      But there are times that I get overly nervous and can’t accomplish what I plan to accomplish  and as a result I try to avoid time based  commitments.

But I’m never really totally pain free, usually either  my back hurts a bit or my shoulder, etc.  I’ve also been getting “buzzing” sensations in various spots of my right side.    This may be due to the C Spine again but it’s transient and intermittent not like 15 years ago when it was painless and constant.

So I’m going into next year, relatively healthy but cautious .  As much as I want to play pickelball, I’m avoiding it, I try to be careful not to Fall.  On the other hand, I’ve been in touch with some old NMB and RPI friends and I look forward to visiting them.  I hope to continue doing advocacy work on Parkinson’s and hospitalization and advising people who are newly diagnosed.  But alas I know that at some point this phase will pass.

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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.

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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.

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Highlights of 2018

It’s hard to believe that Jan 2019 will be four years since we retired. We certainly seem to keep busy. As we approach the new year it is a good time to think about our lives, where we’ve been and where we are going.

In our case life is good at the moment, very good. Ron’s health is good and a change in medicine has resulted in me doing better, the best I’ve been in 5-6 years in many ways. The back/leg pain is significantly reduced and thanks to PT, I can get it to reduce when it acts up. I often get pain when I walk more than .5 to .75 miles. That said I walked 2-4 miles a day on our recent trip to Greece and only used my walking sticks occasionally. I hardly used them at all on our fall cruise to Canada.

Exercise takes up a large part of our schedule, but I hope to feel well enough to get into some afternoon games. I’ve been taking bridge lessons since January.

The highlights of our year are in the attached slide show. I hope you go through it, I’ve been enjoying taking pictures and then I’m learning ways to refine my techniques of general composition and matting, etc. See my website www.gsfriedman.com or if this is electronic, click this link. I now have a “wall” of southern tier waterfalls, etc. I’m also still scanning in old photos and dabbling in genealogy. I’m excited to have communicated with a grandchild of my Grandpa Scherr’s sister. Yes, I’ve gotten to know some of my extended Helman cousins more since Facebook (Melissa, Susan, Steven, Judy), this is the first previously unknown close relative that we’ve met.

Of course the major headlines of the year have been our 60th birthdays, the birth of Orli Lev Bailey, 9 days early, on her father’s birthday, February 2, and Jonathan and Jessica purchasing a house in Riverdale, Bronx. Last year I asked for 60 donations for my Parkinson’s Moving Day Fund Raiser. I had 42 donations but “we” raised $4200 for Parkinson’s Support so I can’t complain. Thanks all.

I’m not driving long distances, so I hope old friends will continue to come to visit me. And we continue to travel as we can. This past year included trips to Israel, Greece and Quebec City. Ron wants us to go to World Parkinson Congress in Japan next June so we might visit our west coast friends on either end of that trip. We are cruising from FLL to New Orleans in March.

Please keep in touch. Phone, email, facebook, text.

Love

Gloria (and Ron) Friedman

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Welcome to my new website

Categories: Family General GSF

Welcome to my website. As you might notice there are several themes. You will find my Journey with Parkinson’s disease and other information related to Parkinson’s. Also are pictures from many of our travels, mostly from the past 15 years. My favorites are separated out. Finally there is information on my and my husband’s family tree research. I plan to add a few blog entries on deciding about where to live when you retire.

Please be patient if pages don’t work, I’m still working on the site but wanted to get it live.

Wow – I feel “human” 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.

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