Sep 23, 2020 Latest post:
Nov 16, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Dear Family and Friends, I want to share some of my long medical journey that I have been on in the last couple of years with you….not for sympathy, but maybe some empathy. I have a need to tie ends together for clarity. I have shared tidbits with some individuals, but I know that it was often very vague and confusing because of the complexity of the eventual tentative diagnosis. It is cumbersome for me to explain everything to each individual that I know. This message may be a little premature without a definite diagnosis, but I am sure that another diagnosis could not be much worse. So here is my “condensed” story.
I have tentatively been diagnosed with either Lewy Body Dementia (LBD) – several weeks ago - or Multiple System Atrophy (MSA)- 2-3 weeks ago by my Movement Disorder Specialist at the Emory Brain Health Center. Both are atypical Parkinsonism diseases. From what I understand, symptoms among the many different PDs and Parkinsonisms can overlap so it is common to change a diagnosis when new symptoms appear. LBD is a disease in which protein deposits develop in nerve cells in the brain where movement, thinking, and memory are involved.
MSA is a rare, degenerative neurological disorder affecting one’s involuntary (autonomic) functions such as blood pressure, breathing, and motor control. MSA shares many of Parkinson’s disease-like symptoms, such as slow movement, rigid muscles, and poor balance. The primary sign is orthostatic hypotension but there is a host of other symptoms.
There is no cure for these devastating diseases. Lots of exercise, which I have been doing for years, is recommended to help slow the progression of the diseases. I will let you do the research if you want to know more details. I hope that the medical professionals reading this are not cringing with my layman explanations!
Initially, in March of 2018, I was diagnosed with Parkinsonism which identifies early symptoms of Parkinson’s Disease (PD) before more symptoms develop. It all began for me with a slight left-hand arm tremor while resting, difficulty walking down steps, arms did not swing much when I walked, as well as not being able to straighten my left arm. The steps and straightened arm issues actually began a few years ago.
I had a DATscan, which identifies the release of dopamine, a neurotransmitter in the brain. It showed some low release in a couple of areas consistent with PD. Thus, I was put on a Parkinson’s drug to help increase dopamine. I have been with my Movement Disorder Doctor now for a year. Fortunately, we understand that he is an expert in MSA and does research on Lewy Body Dementia (LBD).
I have had a number of forward falls outdoors during the last year or so, with a backward fall in our bathroom last August being the worst. It required a surgical repair for my fractured hip. It has healed, but I am still unbalanced and unsteady at times. I am fearful of having another fall. The doctor now says that I need a walker to help avoid the same outcome.
My cognitive abilities were tested twice, once in 2018 and again this year. I am dealing with symptoms grouped into a condition called Mild Cognitive Impairment caused by various disorders like MSA and PD. The executive functioning area of my brain that handles multi-tasking, organization, planning, focused attention, and remembering instructions is impaired. Oh, how I am missing full functioning of these tasks! I used to plan all of the time and headed large events both privately and in the community. Multi-tasking came to me so easily in my days of running a household with three children. On a side note, have you ever tried to draw a stick 3-dimensional kitchen chair?!!
Gary and I are currently enrolled in the Mild Cognitive Empowerment Program recently created and dedicated to an entire floor of one of the buildings on the campus of the Emory Brain Health Center. Emory and Georgia Tech collaborated to design this program specifically for individuals with MCI. The program was realized after millions of dollars was bequeathed by the Cox Communications family in honor of a family member who had this impairment. This beautiful open-floor plan of an existing building was remodeled and opened the first of this year.
Gary and I are now in the fourth class that meets every Thursday from 9:30 a.m. to 3:00 p.m. for a year. Coronavirus, of course, has sidelined us to online sessions for now and eliminated a second day of the week that the program was to be offered. We have only had two weeks so far, beginning on 9/10. The program combines research, clinical care, patient, and care partner support. We meet in a cohort with about 12 others where each member has a coach and meet weekly in various classes of our choosing – interactive social gatherings, art, various physical activities such as yoga, Tai Chi, and cardio, strength, and stretching exercises. Nutrition/functional independence classes, coffee chats, speakers, and cognitive activities round out the program. Members and Care Partners have activities both together and apart.
Gary is currently working on enrolling me in an Integrated Memory Care Clinic program as well as changing our family physician to a doctor in geriatrics (never thought that Gary and I would be geriatric patients!) We have had excellent professionals navigating this journey for us.
As of this writing, some of my other current symptoms include inability to sleep through the night. I am now trying to type with only about 2 hours of sleep each night in the last couple of weeks. Just ask my ZOOM Bunco friends about the bags under my eyes! Internal tremors in the gut, chest, and back usually in the VERY early morning when the Parkinson’s medication has worn off overnight are not painful. I just feel jittery. Occasional leg tremors, dizziness, slow movement, handwriting decline, apathy, and tiredness almost ends my exhaustive list of symptoms with more to come, I am sure.
Anxiety about hosting friends and family but keeping up with household chores is a close second. I have cancelled meals with family as well as hosting game nights with friends at the last minute. Grateful that family and friends took over these responsibilities for me. Thank you! I feel guilty for not inviting friends over in the last year or so before Coronavirus.
Impairment of my visual spatial perception has kept me from driving for the last few months. To add to my issues, I recently found out that I had cataracts and have had surgery on both eyes within the last month. Yep, with my hearing aids and walker, I now definitely qualify as a geriatric person waiting for dentures in the future, I’m sure!
We are blessed to have INCREDIBLY supportive, loving children, in-laws, and grandchildren. They have already done so much and will continue to be here for both me and Gary. The adults met earlier this month to begin discussing the future of my needs and care.
Gary’s retirement in January 2019 is not as free and fun as we had hoped. Grateful that we had another big trip last year with this one being a Mediterranean cruise. Of course, the Coronavirus has made golf and other activities with friends questionable. Gary has helped the children with many different home projects. But he does have busy days taking me to and setting up doctor appointments and therapies, ordering and organizing my medications, and many other tasks to keep us living as normal of a life as we can considering COVID-19 and my health. I need to share with you that Gary also vacuums and helps in the kitchen! He had his first toilet - cleaning lesson a few days ago! Now he needs to focus on hiring someone to remodel our bathroom to accommodate a large walk-in shower. Please hold Gary close to your hearts as he endures increasing caregiver responsibilities.
I hope that you, family, and friends, know how important you are to us, the Young family. What I want for each of you is to embrace the enjoyment and gratefulness for each and every HEALTHY day!
We will be updating you periodically through this site. As a matter of fact, I have been advised by Caring Bridge that today’s post is too long so I will send the rest of it tomorrow! Love to all of you and Bye for now!