The Chair ARRIVED!

It came! AND the power package worked. There is nothing more to say. The joy on her face when she sat in it for the first time says it all.

Happy chair owner

Thank the lord and the heavens above. The Chair has arrived. It has been pronounced good and comfortable.

During this process I watched Cheryl get into and out of a sitting position. In her PCF class they do this as an exercise. A parkie seems to need two things to help with this. The chair needs to be steady and sturdy. No rockers, swingers or swivelers allowed here. We had a plain wooden rocker which is also less than satisfactory for getting up and out of. This chair is taller and solid. I tilts and reclines but has no other movment.

Swivel chairs are a really bad idea for a parkie.

Middle of the Night Comments

Did you see? Dad changed light switch. It has a little knob to make the lights brighter.

Pretending to be a sister, I replied, it’s nice isn’t it?

Cheryl replied, yes it is.

Sometimes in her sleepiness she calls me or refers to me as “Dad”.

Death and Dying and Left Behind…

My sister died in 2008.  I have written about her before.  She was our baby sister.  I will always think of her as my baby sister.

She died of complications to pneumonia.  It is hard to breathe with pneumonia.  Not breathing well contributes to low blood oxygenation.  Effectively one drowns from pneumonia.  Laura had myelodysplastic syndrome.  It did not kill her.  I was her blood stem cell donor.

During Laura’s treatment it was discovered that she was allergic to virtually all the antibiotics they gave her as a prophylaxis. The treatment for pneumonia is antibiotics.  The solution for MDS is kill off the bone marrow and as a result the patient’s immune system.  The antibiotics given during this process put her in a coma for six weeks.  The doctors supposed that she had veno occlusive disease, a liver problem with a low survival rate. She did not have that.

At the beginning of her treatment before I donated my luekoblasts to her, a nurse and social worker and I discussed the possibility that my blood cells which came with my immune response could actually attack her and kill her.  The discussion centered around, how did I feel about THAT.  I was certainly not excited about the fact that I could kill her.  Presented as my call.  A moral dilemma- Laura will die if I do nothing; Laura may die (sooner) if I do something.  Looking back from the distance of thirteen years my reaction is the same – tears come to my eyes. [I had to stop.]

I remember thinking that I should ask Laura if it was okay if I killed her. I did not. This procedure is presented as do this then that then this and … you are healed. I suppose that they discussed with Laura the survival rate. She did not survive. I will always be somewhat skeptical of doctors and cancer cures. The fact that she died specifically of pneumonia is a distinction of no import. I was there when she took her last breath. I will never forget the silence.

My brother died this year in May. He was my big brother. I have written about him too. He was six years older than I less nine days.

He followed his dream job to Florida many years ago and from that job he went to others always in Florida. His last job was a coder/programmer for a subcontractor to Microsoft. He was a smart guy or at least that is my perception from little brotherhood. Every time I turn on my computer I think of Bill.

Families are complicated. One wants to believe that there is a close personal connection between siblings in the family but that does not always occur in life. Gaps in age, education, life choices, geography and beliefs tug at simple family ties. Our family is no different. We held no animosities but we did not live in each other’s lives.

Our parents Virginia and Robert died about eight years apart. Dad passed away in 2007 about a month before Laura. Mom passed away in 2016. Every time I throw away a box from Amazon or Boxed Up, I think of Mom. I hear her voice, “Paul, don’t throw away that box! That’s a good box.” Mom kept a lot of crap in boxes.

I think of Dad in various situations. He was what we would call today a hacker. When I was a kid our basement was full of old electronics. When he retired he became enamored with computer equipment. He spent a lot of time futzing with computers and programming them. Visual Basic and he were friends. He was always working on something called his Bingo Program. He occasionally journaled too but although I inherited all his computer stuff I have not found any of his writings. I think of him when I write random comments in this blog/journal of mine.

Now it is only Joyce and me. We talked yesterday for about an hour. We did not talk about anything special. I called her merely to hear her voice. It has been thirteen years since our original family group started dying off. For some reason it is important that I hear her voice more often.

She mentioned in our conversation that she is not very excited about turning 70 this year. (Wow has it been that long?) She sent me the picture below many years ago in a birthday card. Laura is in the middle. In her note she wrote – I’m so glad you are my brother. I am so glad you are my sister, Joyce.

Remembrance of occasions and enjoyment of those fade with time. I have often pondered why I remember some things and have absolutely no memory of others. What we were excited about on this occasion is lost in my memory. Joyce found the picture and sent it to me. Obviously it is Christmas time. I am swallowed up in abject joy and laughter. No memory at all about it. I am grateful for the picture of us.

Life and death? — Dad was not afraid of dying. He said as much to the doctor when he was given the news that an X-ray photograph of his abdominal area revealed a mass on his colon. I do not fear dying. I worry that Cheryl will be provided for after I am gone. I wonder if Laura would have lived longer if she and I had not exchanged blood cells. I wonder if she would be alive today if her doctors had simply been smarter about what was going on in her body. Maybe she would not have spent six weeks in a coma. … could have, would have, should have.

Laura told me about a month before her death that my stem cells had taken up residence in her bones. Our life experiment was working. I speculated – how do they know? Her response was – I think because they can look in there and see little X’s and Y’s. Yes, I imagine they could detect those somehow.

In the background of the conversation between Joyce and me was a thought like, I should have asked him (her) that when Dad was still alive, when Mom was still alive, when Laura was still alive, when Bill was still alive. As I talked to Joyce I thought about how short our time on Earth is. Seventy years seems like a long time but it is not. I thought about how fragile our existence here is. At this time in our life a virus threatens lives. Ask those questions. There may be little time to get an answer.

Other morose thoughts — In his late years, Dad would not hesitate to tell you that he was older than his father. Dad’s father died when he was 82. In Dad’s mind he felt that he would live to be 82. As he got closer to that age, he resigned himself to the fact that his life was almost over. He was not worried about dying. His only concern was, would it hurt? I think that was his only fear.

Pain is the only thing that makes me uncomfortable about death I believe that I do not feel pain as others do. I understand Dad’s point of view about pain. I wonder if it hurts to drown. I wonder if it hurts to die of pneumonia. Does a sudden massive heart attack hurt?

Death causes a gap in the family. I have become very aware of that gap in our family. Joyce and I are closer. I believe we are. It is just us now.

Now it is Autumn

Halloween is coming

It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.

In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.

Wildlife abounds

Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.

And more Halloween decorations.

Bush Jack-o-lantern

Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.

The path and stats

Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.

And Parkinson’s still sucks.

From Edie… a Facebook Friend

From her post

This is not my writing but Edie captured my thoughts with this post on Facebook. She and her husband are in about the same place as Cheryl and I with Parkinson’s Disease.

“Accepting what is…
Choices and Avoiding
The Sting of Defeat…”

There isn’t a day that I don’t
Experience either a “slap myself on the forehead” moment, err on the side of caution, spout off an opinion or best of all, make my fella laugh or smile.

Some days are just rough. They’re tough!

Well…there are good times; a smile across the room, a look of total understanding and the knowledge of who we are currently (and who we once were together. We’re still one.

This is a tough week for me personally. Our 45th anniversary is Saturday, Oct.24th. Tommy has been clear headed lately with some delusions.

A while back he mentioned several times that he wanted things to be “like they used to be” with our family.
Life evolves and nothing remains the same.

As we all know life is not static. We’re a close family, but the grands have grown up, moved away and their parents are busy too. We used to have UFC Fight Nights, BIG holiday gatherings etc., and even no reason to get together functions. We gathered often and now? Not as much. Parkinson’s causes loneliness.

PD has changed all of us in various ways. We’re each caught in the midst of love, losses and our own feelings and responsibilities in life aside from Parkinson’s and Dementia.
It’s inevitable.
It happens.

We’re all worse for the wear because it’s a ruthless disease. But making, (hopefully the right) choices, accepting the realities of PD and Dementia, and preparing proactively for change has helped me to avoid the sting I mentioned at the beginning of this post.

Our CNAs have given me the “breathers” that I have long needed to separate myself from too much of anything that could bog me down when I’ve been up to my ears In either a struggle with Tommy, a medical issue, the VA or my own emotions. As caregivers we have lists of to do’s a mile long that threaten to swamp us.

While I’ve been planning our family gathering for our immediate family members, I’ve pulled out photos of us throughout the years, and of course…I cried.

I cried because I love Tommy passionately. I miss him, but I accept him as he is too. I do love him even more today than yesterday. Some days we get on each other’s last nerve too!!!

I cried because as much as I have tried to keep PD and Dementia out of our lives, it has, like a bee being threatened, taken a bite out of us and stings like crazy!

When I finally came to terms with accepting the transition from normal to cognitive issues and delusions, I had another epiphany. I came across a photo of one of the Santorini stones I paint. Painted in the body of the bee are the words, “Let It Bee.” Lord knows, I’m trying!

Moving forward.
My menu for Saturday consist of Tommy’s favorites and the carrot cake is my favorite. The wine, Moscato-Asti is our favorite.

I pre ordered (from local businesses) everything so I wouldn’t have to prep or cook. I’ll decorate the cake with a topper that says “We Still Do” and edible FALL leaves. I’m excited and a little off kilter too.

Having the family near will be centering for us both.

The menu is planned and is “enough”. It will be truly complete
when our group comes together with gratitude around the Kynard House table.

I wish you all could join us! I’ll post pics later.

Edie and Tommy

We too celebrated a milestone anniversary this year. We have been married 50 years. Sometimes I am disappointed that our retirement activity is centered around Parkinson’s Disease and other days I have come to understand that it may be the reason for being.

Our children organized a wonderful celebration. For that I am very thankful.

50 year cake

Anna also put together this collection of snippets of various sources.

We were young and skinny then.

… 50 years later here we are. Happy 45th Edie and Tom – May the sun always be shining on you and your family.

Down Today?

Someone posted this quote from Sir Hopkins on Facebook and it passed through my news feed today. There is a Beatles song — Eleanor Rigby — that popped into my head. … ?? …

I have lots of things to ponder. I told Alexa to play the Beatles. Music from a time when Cheryl and I were young. Their music is soothing today. Alexa selected “Let it be” for the first one to play.

Black Bird … calling in the night.

This past week or so we have added two new drug therapies to Cheryl’s meds. They are working and they are not working. In a previous post, I described quetiapine for sleep. It seems to help. Melatonin helps with falling asleep. Seraquel seems to help with remaining so. Although we have had some odd episodes in the bathroom at night, it seems that she is actually asleep during these. At least, she has no memory of these in the morning.

Good Day, Sunshine!

Morning conversation often starts with her inquiring how I slept. We talk a bit about anyone that we may know or a family name that shows in the obits. And the past few mornings she has gotten up before me and had her bowl of cereal for breakfast. Sometimes she asks about overnight. Sometimes I tell her gently in my effort to determine if she has memories of anything overnight. I think the quetiapine is working. She will get up for bathroom trips but she comes back to bed. I know. I get up and go to the other bathroom. I think we are on the same schedule. (smiley face emoji here)

Yellow Submarine — similar shape to Ondansetron

Ondansetron was prescribed for Cheryl’s repeated feeling of nausea after she takes her medicine. She has been taking it for a long time and apparently her stomach has become intolerant of the meds. Zofran was originally developed for those dealing with chemotherapy. It seems to be working well. Although she still lays down in the evening after taking meds at seven, she does not complain of nausea, she complains of fatigue. And that only for a short(er) period of time.

Back to Anthony’s quote

Everything is random and there are no guarantees.

As a caregiver, I often find myself focused on observing Cheryl’s behavior and asking her questions about how she is feeling in that very moment. From her point of view, I am probably exhausting. From my point of view, I cannot help it. I love her so much and it tears at my heart to see how this crazy despicable disease has changed her life, mind, cognition and even her personality. Nevertheless I have to keep reminding myself to take time for myself whether that is exercise – walking or riding – or reading or journaling (now). The quote from Anthony Hopkins struck a cord with me. Another way to say it is, “Stop and smell the roses.” One cannot put too much emphasis on taking time for oneself. Balance between giving care and taking care is a delicate thing to achieve.

Alexa just played “Help” by the Beatles

Ask for help before Parkinson’s sucks all the air out of the room and the day is lost. … Oh bla dee oh bla dah … life goes on! [and Eleanor Rigby is playing again]

Uncle Wally Died Today

In the midst of a pandemic, life and death which is a part of life, go on around us. Wally was 90 years old. He stayed at Wellsprings at Evergreen, a retirement community in Cincinnati, Ohio.

I didn’t know Wallace Comer very well in life. On the few occasions when I had met him, he was cheerful about life and his family around him. His niece married my son and it is through connected family that I met him.

On Monday, October 12th, my son sent a text message to me. “Melissa’s Uncle Wally passed away over the weekend. He pretty much decided he was done a couple weeks back and dropped off pretty quick.” … In another text message; “… He seemed like a guy who just wanted to quietly check out.” So our family is sad today. It is easy to let go when you are very old. My own father did just that at very nearly the same age as Wally. If you knew Wally in life, remember him. He is still alive to you.

Wallace Comer

Cincinnati – Wallace James “Wally” Comer age 90. Born May 21, 1930. Passed away in the early morning hours October 11, 2020 at Evergreen Wellsprings senior Facility. Survived by son, Josh Comer, Pittsburgh PA. Sister Mary Listerman, Erie PA. and many nieces, nephews, and good friends. Predeceased by sister Patricia Schneider and brother James Comer. Wally graduated from Elder HS in 1948. He served in Korea as First Lieutenant US Air Force 1952-1954. Graduated from the University of Cincinnati with a B.S. Degree. Extensive career sales/marketing and counseling. Worked for Proctor and Gamble, Quaker Oats, Foote Cone & Belding, and Hamilton County Rehabilitation Services. In retirement he enjoyed golfing, watching the Reds and visiting friends. Visitation will be Wednesday, October 14th from 10:00 AM until time of Funeral Service at 11:00 AM both at Mihovk-Rosenacker Funeral Home, 10211 Plainfield Rd. Facemasks and social distancing are required.

Wally, I did not know you well but rest in peace my friend.

How do you know when it’s love?

I have a bad memory for names. Authors that I like to read, songwriters I like to listen to rock bands I loved in my younger years, I have a hard time knowing who wrote what or who sings what.

Recently when Eddie Van Haylen died, I told Alexa to play a mix of his music. It played “What is love?” first. I had not heard this song in awhile. I was very touched by the words of this song. I do not know why, but it means more to me now.

Van Haylen

Everybody’s lookin’ for somethin’
Somethin’ to fill in the holes
We think a lot but don’t talk much about it
‘Til things get out of control
Oh, how do I know when it’s love
I can’t tell you but it lasts forever
How does it feel when it’s love
It’s just something you feel together
When it’s love
You look at every face in a crowd
Some shine and some keep you guessin’
Waiting for someone to come into focus
Teach you your final love lesson
How do I know when it’s love
I can’t tell you but it lasts forever
How does it feel when it’s love
It’s just something you feel together Oh oh oh oh
Oh when it’s love
Oh oh oh oh
You can feel it yeah
Oh oh oh oh
Nothing’s missing, yeah Oh oh oh oh
Yeah, you can feel it
Oh oh oh oh
Oh when it’s love
Oh oh oh oh Nothing’s missing
How do I know when it’s love
I can’t tell you but it lasts forever
Uh, how does it feel when it’s love
It’s just something you feel together
Hey, how do I know when it’s love
I can’t tell you but it lasts forever
When it’s love
Uh, When it’s love
Hey it lasts forever
(Na, na, na, na, na) when it’s love
(Na, na, na, na, na)
(Na, na, na, na, na)
(Na, na, na, na, na) give it up We’re gonna feel this thing together (na, na, na, na, na)
When it’s love, oh (na, na, na, na, na)
When it’s love, baby (na, na, na, na, na)
(Na, na, na, na, na)
You can feel it, yeah
(Na, na, na, na, na)
(Na, na, na, na, na)We’ll make it last forever
(Na, na, na, na, na)
(Na, na, na, na, na)

Oh, it’s love Source: LyricFind

Songwriters: Alex Van Halen / Edward Van Halen / Sammy Hagar / Michael Anthony

When It’s Love lyrics © Warner Chappell Music, Inc

When you tell Alexa “Play Van Haylen” — you get a lot of rock songs with a love theme. Somehow that means more to me these days as I spend more time addressing Cheryl’s needs.

Parkinson’s disease sucks. (I have not written that for awhile.)

Two New Arrows in the Quiver or Better Living through Chemistry

Ondansetron for nausea and Quitiapen for a sleep aid. How are they working?

Ondansetron Hydrochloride

The drug for nausea – Ondansetron – seems to work very well. I have adjusted when Cheryl takes it a bit. The instructions merely say three times a day and at first I interpreted that to mean 7AM, 1PM and 7PM which are normal times for her to take meds. For the past couple days I have given her the evening pill at about 5PM which is 45 minutes to an hour before we would ordinarily eat dinner. It seems to be working for her. I have repeatedly asked her about stomach issues and she reports no issues with her stomach.

This report – no funny stomach – is very encouraging since it has been her main complaint for months. I can empathize. Over the past couple years she has lost approximately thirty-five pounds of weight. The dyskinesia puts her body in constant exercise but the combination of no sense of smell and a slightly uncomfortable stomach keeps her from eating much. (During this whole time she has not vomited but as she says, it is right there.)

Quetiapine Fumarate – 25mg

The drug used as a sleep aid – Quetiapine – might or might not be working as hoped. She is prescribed 1/4 of this little pill before bedtime (10PM). Shown above it is approximately 1/8 inch in diameter. We have a pill spliter but these are not scored for cutting in half as many pills are and certainly not scored for quarters.

The first night she took this she slept completely through the night. This was the first time in approximately two years. The second night she got up once. The third night she got up once and seemed restless for a bit when returning to bed. The fourth night was similar to nights before she started taking it. I am not convinced that she is getting the same dose each evening, so I will find a way to slit these tiny little pills as uniform as possible.

An update: Last night seemed better. She used the walking frame for stability. Only once.

Zofran — From Wikipedia —

Ondansetron, sold under the brand name Zofran among others, is a medication used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, or surgery.[2] It is also effective for treating gastroenteritis.[3][4] It is ineffective for treating vomiting caused by motion sickness.[5] It can be given by mouth or by injection into a muscle or into a vein.[2]

Common side effects include diarrhea, constipation, headache, sleepiness, and itchiness.[2] Serious side effects include QT prolongation and severe allergic reaction.[2] It appears to be safe during pregnancy but has not been well studied in this group.[2] It is a serotonin 5-HT3 receptor antagonist.[2] It does not have any effect on dopamine receptors or muscarinic receptors.[6]

Ondansetron was patented in 1984 and approved for medical use in 1990.[7] It is on the World Health Organization’s List of Essential Medicines.[8] It is available as a generic medication.[2] In 2017, it was the 83rd most commonly prescribed medication in the United States, with more than nine million prescriptions.[9][10]

Seraquel — From Wikipedia —

Quetiapine, sold under the brand name Seroquel among others, is an atypical antipsychotic medication used for the treatment of schizophrenia, bipolar disorder, and major depressive disorder.[6][7] Despite being widely used as a sleep aid due its sedating effect, the benefits of such use do not appear to generally outweigh the side effects.[8] It is taken by mouth.[6]

Common side effects include sleepiness, constipation, weight gain, and dry mouth.[6] Other side effects include low blood pressure with standing, seizures, a prolonged erection, high blood sugar, tardive dyskinesia, and neuroleptic malignant syndrome.[6] In older people with dementia, its use increases the risk of death.[6] Use in the third trimester of pregnancy may result in a movement disorder in the baby for some time after birth.[6] Quetiapine is believed to work by blocking a number of receptors including serotonin and dopamine.[6]

Quetiapine was developed in 1985 and approved for medical use in the United States in 1997.[6][9] It is available as a generic medication.[10] In the United States, the wholesale cost is about US$12 per month as of 2017.[11] In the United Kingdom, a month’s supply costs the NHS about £60 as of 2017.[10] In 2017, it was the 76th most commonly prescribed medication in the United States, with more than ten million prescriptions.[12][13]

This website has pictures and characteristics of everything.