It was a miserable eve. Cheryl has had her meds adjusted a bit to help with creeping dementia issues. The doctor has been slowly increasing the dosage to creep up on the optimal dose. The most common side effect is nausea and vomiting. The new prescription is at the optimal dose and it appears Cheryl cannot tolerate it at that level. She has been sitting on the bathroom floor on and off for most of the afternoon.
As she was building up to this dose for the past several months, I expected to see some behavioral changes. I have not. As the situation got worse I terminated giving this med to Cheryl.
But last night (New Year + 1) was very difficult and very different. I thought that perhaps this drug did not work for her but it did reduce and eliminate the strange compulsive behavior that she exhibits. She also became delusional. She was certain I did not belong here.
On the next day, Monday, I called the doctor’s office and got her nurse practitioner on the phone. It is hard to explain how excited I was to have someone call back that knows Cheryl and her condition and has seen her on a regular basis. I explained what Cheryl was going thru and that I had discontinued the medication to relieve the symptoms. The NP recommended that I adjust one of the meds she was already taking with no ill physical effects and perhaps Cheryl would sleep solidly through the night and do better the next day. It worked.
Still searching for clues at the scene of the crime (Joe Walsh).
It’s a new day. Today is football day. Seems like everyone everywhere is tuned to some kind of football game. It used to be, many years ago, a time to visit our in-laws. Our niece’s birthday was January 1st. She died a year or so back not from the Covid dilemma but from other health issues. She had not been well for some time. We have not celebrated her birthday for some time. Families are complicated and estrangement is often part of the complication.
It’s a new month. January is often cold but it seems to take winter some time to get started. This January is no different. It is rainy and poopy outside today and the temperature is expected to drop into the upper teens overnight. I am so glad we live in the times we live in. It will not be necessary for me to add coal to the fire for overnight nor will it be necessary for me to huddle underneath a buffalo skin.
The current federal administration authored a congressional bill referred to as “build back better”. The previous administration had a motto of “make america great again”. Both of these are ludicrous. Both imply that there is something not quite right with now. That is absurd. Nothing is wrong with now. We are not heating with coal or huddling under buffalo skins. Slowly, ever so slowly we are converting to electric powered transportation.
Now is not perfect, of course, but it is greatly better than what was. We often think what was is better that what is. Still searching for it, clues, that is. Try to enjoy and be in the moment.
It’s a new year and thank God for that.
Resolutions? Yep. Do better at living now not ago. Try to not get fat living now.
This is Parkinson’s Awareness month but for me it is just another month. I have expanded these thoughts and comments specific to Cheryl. In the comments below I have added information that she might say but these days Parkinson’s has robbed her of language. She can speak fine but words can be hard to retrieve and occasionally some severe confusion about what is coming, where she is, or, for that matter, what happened moments ago.
To the Ones That Love Me…This is what you need to know about me and my Parkinson’s Disease.
This is not a death sentence, PD can be managed. Encourage me to exercise daily, it is MY MEDICINE. – It is remarkable how much a few simple exercises can help Cheryl. Many of the exercises are simply vigorous movements or stretches. At her Parkinson Community Fitness the class exercises are tailored to folks dealing with PD. She cannot do all of the motions that the instructor asks but she tries her best to do them. The exercises can pick her up in a way that acts on her body like an extra dose of meds. Many times afterward we will have a late lunch somewhere because she is feeling good.
Early on she recognized how much exercise helped her to feel good. When her mom was still alive she spent a great deal of time at Bridgeway Pointe helping Elaine with various things. Elaine regularly exercised on a recumbent bicycle-like exercise machine. Cheryl did this as well with her mom and occasionally with me at the YMCA. She sought out an exercise regimen at the Y with one of the trainers there and developed some exercises specific to her particular inabilities. Later when PCF opened we joined. It has been and still is perfect for a non-athletic person such as Cheryl.
Don’t make assumptions about my PD, every case is different. – For many years Parkinson’s symptoms for Cheryl were mainly physical. This is no longer true. Hallucinations, delusions, mental confusion and memory loss have added to the morass of physical symptoms.
A meditation – serenity and peace comes to me when I can see that Cheryl is safe and unafraid. Most things that occur with PD cannot be changed. It is very hard to accept that fact. It is a degenerative disease. In my manliness I can see, or think I can see, ways to mitigate and ease her mind, life, anxiety and worries. And when I have done that I have removed any small bit of independence that she still has. In Cheryl’s mind oft times her disability does not exist. She has yet to capitulate. A confused mind does not recognize its confusion.
My meds have to be taken EXACTLY on time everyday. Spontaneity is no longer, please help me plan ahead. — This is complicated by the fact that what is eaten either before or after greatly affects the usefulness of the medication. The primary treatment of PD is a combination of carbidopa and levodopa often referred to as Sinemet. PD is a result generally of a dopamine deficiency. Absorption of this chemical occurs in the gut and the presence of other proteins inhibits absorption. So, “Hey. I’m hungry let’s go grab a burger somewhere!” spontaneity is gone from our lives and has been for some time. We often forget that and opt for spontaneity anyway.
That being said, Cheryl greatly enjoys the company of others (friends, siblings, past acquaintances) during dinner or lunch and she easily loses track of time and pills, food and drink get out of sequence. Her body’s reaction to this is twofold; she becomes exhausted (but not always) and she may develop severe indigestion (but not always). She may have either, none or both reactions.
My health comes first. I need to put myself before other’s needs and responsibilities. – but Cheryl is unable to do that easily. it is not part of her personality. It never has been. She is the oldest of six children and as they were growing up, her mom gave her more and more things to do and help with. I tell her often that what we do and where we go is really up to how she feels. She knows that she needs to put herself first but she would rather be with family and friends even when she is feeling not so good.
The other aspect of this is that she may feel perfectly fine until we are somewhere for a bit and she will crash. After she recovers she will become apologetic and worry that she has ruined everyone’s experience.
Anxiety is real. Don’t overwhelm or over plan me. – I have over time gone behind Cheryl’s back, so to speak, and have suggested to organizations that Cheryl is involved it that they find another to perform whatever little task she has been doing for them. She was the go-to person for anything computer related. It was her career for many years. These days it is merely a source of anxiety and confusion for her. It has reduced her anxiety level and in some cases has made me the bad guy.
I am okay with being the bad guy if she sleeps better at night.
Sometimes l am exhausted, especially late afternoon and evening. – This happens most often after she has taken her medication. It seems the meds can overwhelm her body but not always. “Always” would be easier to plan for.
How I feel changes by the hour. I can feel good in the morning and terrible an hour later. I am not the old me who can multitask and go-go-go… – It seems that any sort of multitasking activity is gone from Cheryl’s life. I however like to whine about how many new things I take care of in our life now. Cheryl no longer drives. I am her driver (whiny voice).
Be patient and don’t overwhelm me. – two questions in a row overwhelm. If that happens with me nearby, I will answer for her and slow the conversation so that she can keep up. This can include repetition.
Apathy is real! – And sometimes attention deficit is real also. It is easy for her to start one thing and be distracted by some other thing.
Sometimes l just can’t do a task and need your encouragement. – Like puzzles.
Communicate with me on your concerns and help strategize new ways of doing things. – This is a constant activity in our house. It is easy to use up days thinking about and trying new ways of doing things. It has also taken some time to train the care giver (me).
Help me to eat clean foods and drink lots of water. – Cheryl really does not like vegetables of any different variety that was not fed to her as a child. I do not know if this has any truth to it but there are many things she will not eat or even try. Her idea of lots of water is two or three sips. These are my observations from my experimentation with Hello Fresh meal kits.
As a caregiver it is hard for me to explain how frustrating some of these nuances can be. Resistance of personalization of this disease is very hard to do. I mean this two ways – projecting my feelings, what I think she is feeling, onto Cheryl and dismissing what she tells me that she feels. One of the comments above is that every case is different. This is not unique to PD. Scientific medicine would like the mechanism of disease causation and progression to present as a commonality to all humankind but that simply is not so.
There is a lot of discussion of phases of Parkinson’s disease in medical texts and websites. From my narrow view that is mostly crap. Literally everyone is different. It serves no purpose to relate current symptoms to some list and determine were one is in the dance we all have with death. It is best to look for and act on the feeling good times. There will be plenty of time to consider the feeling bad times after one has passed from this life.
Almost fifteen years ago this summer is the time that I found out that I was a match to my youngest sister Laura. She had found out earlier in the year that she had Myelodysplastic syndrome. Her body was turning on her. She would die without treatment. Then our whole family was still alive.
Mom and Dad still lived in their home in Madisonville. My elder brother lived in Florida near Orlando with his wife. My younger sister Joyce lived with her spouse in Portland Oregon. Laura and her husband lived in south eastern Indiana and Cheryl and I lived in southwest Ohio in Cincinnati. Now only Joyce and I are still alive.
I think of these things when I donate blood four times each year. I ponder how long I can donate blood. The only answer I get when I search for that information is, as long as you are healthy, you can donate.
This started with Laura but I had donated blood before, just not on a regular basis. When I was in school at the University of Cincinnati in the last millennium an instructor whom many of us liked let slip some personal information about his family. His son had been in an accident and needed blood donations. Several of us went to Hoxworth to donate. I was too young so permission had to be obtained from my parent. Looking back this detail seems odd. I was eighteen at the time.
With Laura’s diagnosis and need for blood stem cells all of us siblings were tested to see if any of us were a match. Only I was a match. I found this out from the nurse who called me as was driving back towards Boston from Cape Cod. We had gone there for a little vacation and to visit with friends. This was convenient for Laura and me as neither of us had to travel far to do this but I had to get home first.
The summer of 2007 was a long one for Laura and me. I cannot speak for Laura because she did not make it out the other side of the treatment process. I am changed forever.
The process takes several days. For me it involved a very thorough physical and several meetings with the medical folks at the end of which I was deemed healthy enough physically and mentally to go through the process. During one meeting with a nurse who also had background as a sociologist, I was made aware of the fact that there was a chance that during the implantation process my stem cells could take over her bone marrow and give rise to my immune system within her body and reject her. Not simply that it might not take and we would have a do over. My immune system would reject her. Seems like a bad thing to happen, to be rejected by your own immune system.
Blood stem cells are removed from the donor in two ways either directly from your hip or by apheresis . In Laura’s case they used apheresis to remove blood stem cells from me and gave them to her after killing off her bone marrow’s ability to produce blood cells. Over a period of several days – my memory tells me four – I was given an injection of some growth hormone that told my body to make way too many blasts (precursors of various blood cells). These leak out into the peripheral circulatory system and can be retrieved by an apheresis machine. It was a miserable four days. Not so much at first but they can give you the injection anywhere and I opted for my arm. I am pretty sure that this started on a Monday so we were ready to do the apheresis on Friday. The had to get the blasts out of me before my body reabsorbed them.
The apheresis process takes a bit of time also. I do not remember talking about the actual process at the beginning. I suspect that if the donors are given all the gruesome details at the start, some will back out. The process was generally described as similar to donating blood except that the stem cells would be removed and the rest of my blood would be given back to me.
In this sketch you can see the general set up. Blood is removed from one arm and the returned processed blood is put into the other arm. Pick your nose, pee and fart before you get started because there is no moving around once the machine is running.
I asked the nurse technician who was monitoring the machine approximately how long it might take and she responded with eight to nine hours for the first session. She said sometimes they do not get enough the first time so they have to do it again to get more stem cells. I intermediately got up to find the men’s room and empty everything out and began to worry about how long my bladder would hold out. In the end it was not a concern. I suspect my kidneys did not understand what was happening so they elected to take a break for a few hours. I helped by not drinking anything of course but there was a bag of saline as a part of the process and some blood thinners to keep my blood from gumming up the pumps. Nine hours is a long time to sit.
Making conversation I asked how many cells they were trying to harvest. Ten to eleven million came the reply. I remember thinking that seems like a lot but I did not have any idea what they might need to do this. I was curious how they would figure out how many they had and she told me they would count them. It is amusing when you think about it. how else would you figure it out. Isolate a certain quantity of serum and under a microscope count the stem cells. Well, huh. Even an engineer can do that.
With all the needles and tubes in the correct position we started. I think the first session was about seven hours or so. There was a clock, one of those battery jobs, hanging on the wall opposite where I was sitting. What a poor place for an ineffective time keeper to hang. After five hours I was certain that it had slowed down. After six hours I was certain it had started running backwards ever so slowly. At the seven hour mark the stem cell bag which I estimated could easily hold a liter had a tiny amount of yellowish life saving liquid in it. The nurse pronounced it good and Cheryl took me home.
Oddly I was incredibly tired. I had not felt this exhausted before. I had not moved all day. But my blood did. It had been in and out of my body about ten times during the day. It was wore out. As I rested in my chair hovering between resting and sleep we got a call from the hospital, I needed to come back again for a second session. How many cells I asked. About four million was the answer. A disappointingly low number, I was certain that they would need two more times. I may have said shit out loud.
On the second day the procedure the was much faster. I spent approximately four hours in the chair with the stopped clock view. Often the donor’s body wakes up and puts more cells out there where the apheresis machine can find them. But that is not really why I am telling this story. There were several times during the next couple of weeks when I was called to go directly to Hoxworth to donate other bloods products to Laura. Platelets mostly as I recall. On a couple occasions I gave Laura platelets. I may have given her red blood cells also but I am unsure of that. She was busy staying alive and I was trying to help. All of these experiences got me used to the activity of donating blood.
I started doing this at the main Hoxworth Blood center near UC Hospital in Clifton and then later discovered that I could do this at another collection center in Blue Ash, Ohio. Once when I was there donating, the nurse technician asked me if I had ever considered giving a double red. After a discussion of what was entailed and other questions, I tried it.
This is Laura’s legacy. Her brother became so comfortable with donating he continues to do it fifteen years later.
I often think about Laura when I am sitting in the chair listening to the apheresis machine do its thing. There is no stupid clock to stare at. I know now how long it takes. It takes thirty to forty minutes. Sometimes it takes longer because the technician is often monitoring other donors. Most often I read a book on my tablet reader. Occasionally I listen to the patter of conversation around me.
Hoxworth is actively soliciting folks who have had SARS CoV2 disease because their blood contains substances that can help those who are recovering from that disease. These folks sit across from where I am donating.
Over the weekend the reward for donating was a free T-shirt. Free t-shirts were the give away today, Easter Monday also. I selected a St. Patrick’s Day themed shirt. It is in the picture.
Laura’s recovery was long and arduous and fraught with disaster. She spent about six weeks in a coma as doctors tried to discover the source of her liver inflammation. Veno-Occlusive disease was the suspected culprit.
Hepatic Veno-Occlusive Disease (VOD) AKA: Sinusoidal Obstruction Syndrome is a well recognized complication and leading cause of mortality in hematopoietic stem cell transplant resulting from severe hepatocellular necrosis and hepatic vascular congestion. — This is from a medical teaching website. Laura and I both read about it in a big white binder that she had gotten at the beginning of her process. I remember her looking at me that first afternoon with her yellowish face telling me that there was about a 3% recovery rate. Pretty crappy odds she said. She was a CPA and the controller of a small successful beverage distributor. She knew about numbers analysis and crappy odds.
It was not that. Eventually the doctors discovered that Laura was having a bad reaction to the antibiotics given to her as a prophylactic to infection while my stem cells were taking over. She did recover but six weeks asleep devastated her body. During a visit at the holidays she told me that my stem cells had populated her bone marrow and was doing fine. A few weeks later she succumbed to pneumonia that could not be treated in the conventional way because of her problems with antibiotics.
Laura died with a part of me in her. Part of me died when she passed out of existence in early 2008. Watching someone whom you worked so hard to save take their last breath is a profoundly life altering experience. I hope to never participate in an experience like that again.
Today is the day after St. Patty’s day. So what? Nothing what except we are now three days into the asinine idea of Spring forward. In another week or so we will be adjusted to the new med schedule but not yet. I could spend several paragraphs discussing the odd arguments pro and con to the whole idea of time change but it seems to boil down to a cover-up for a scheme to get more golf daylight without having to negotiate with each individual employer to do so. Who started this idiocy?
What a mess with a parkie! For those of you who are not taking care of a Parkinson’s patient on a daily basis, it is a crisis in disguise. The medication schedule is off by an hour all day long. I know from previous experience she will be miserable for about thirty minutes before each dose and then about thirty minutes after each dose as the meds kick in and the chemicals stabilize.
Assorted confusions appear in her mind. Early this morning when I got up and brought her her first dose of everything all seemed normal. I sat on the edge of the bed and waited as she did everything she needed to in the bathroom and then took the collection of pills I had set on the bathroom counter. When she was done I took the little glass bowl we use and the water glass back to the kitchen. Usually when I return from that we have a little discussion about what is happening that day as she is deciding to lay down a bit more or stay up. Today, she was still standing at the bathroom counter waiting. I asked her if she needed something else and she responded with she was waiting for that guy to bring more pills. I convinced her that there were no more pills for a few hours. And we had to go nowhere until noonish when her exercise class began. She seemed satisfied with that and we napped for a while more.
I awakened about an hour later and realized she was in the bathroom again so I got up. In the daylight savings time darkness I could see she had laid out some clothes that she might wear if she was going to church. I gently pointed out that we are not going to church. We were going to exercise class later. Anger and confusion appeared so I went to the living area to prepare for the miny tirade with some coffee.
In the kitchen I helped her get some cereal and dried fruit for breakfast. Life cereal with dried cherries is her favorite combination for breakfast with some orange juice. She ate that and I had some scrambled eggs with toast.
Afterward she started. One minute we are going to church, the next minute you say we are going to a funeral, and now you tell me it is an exercise class. Which is it! I do not understand why it keeps changing. Pointing out that she was dreaming and when she awakened she continued on in the dream, although appearing to be the case, was not the explanation she wanted. She was certain someone (me) was trying to purposely confuse her and she was tired of it.
Last night was very tiring she told me. You mean the business with the address list? Yes she said. I thought there would be more so I took my coffee to the chair I often sit in. On the previous evening she was organizing her birthday and anniversary card list. I had hoped to help her and simplify this activity last year with a new planner from Staples. All of the information I have installed in a spreadsheet that Avery can read so that I can print labels for each card. I printed labels and last year she carefully pasted the label information on the proper page in the new planner. Each month she gets out two or three old hand written address books left over from her mother and from her office before we moved to the condo minimum. I asked where the new planner book was and she responded that she uses that but it was going to take a year or longer to get the correct information in it. I incorrectly pointed out that she had put the information in there last year which caused an angry response so I quit talking about it. Eventually she became tired, took her night time meds and went to bed. So did I. It was early for me too.
And then she became calm. She got her sewing project and sat down to watch the early morning news with me for a bit. And I might be understanding the confusion. The old address books are crammed with a lot of info in a small space. The planner — being a planner like a teacher might use — is organized by month and day. We labelled it with the correct info on the correct day but her cognition no longer allows for that recognition. To her, it is a big black book with almost no information in it. I may have to create a cross reference by name and family.
On the way to class she suggested that we go somewhere for lunch. It started goofy but it may turn out to be a good day.
We went to our old favorite diner for lunch after the exercise class. We had not been there for more than a year. Her conversation was about the diner and old remembrances. The diner had been painted and the ceiling had been replaced. It was much brighter inside. Often something on the menu in one of these places will spark a memory of part of her family. This time an old friend that we had not seen for awhile strolled in to have lunch with her friend.
The pandemonium seems to slowly ever so slowly to be breaking free. “Hallelujah” is on the music loop at the exercise class.
Sadly the daylight will be saved whether it needs to be saved or not. Personally, I think not. The system is idiotic. Keep in mind China has only one time zone. Geographically that country is as wide as the U.S.
And Parkinson’s will still suck. Just more so while we stand still and the time zone shifts left or right.
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.)
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.
Quetiapine was developed in 1985 and approved for medical use in the United States in 1997. It is available as a generic medication. In the United States, the wholesale cost is about US$12 per month as of 2017. In the United Kingdom, a month’s supply costs the NHS about £60 as of 2017. In 2017, it was the 76th most commonly prescribed medication in the United States, with more than ten million prescriptions.
This website Drugs.com has pictures and characteristics of everything.