Parkinson’s Awareness Month

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.

Nevertheless

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.

Carpe the Diem!

Double Red and Laura’s Legacy

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.

An innocuous drawing

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.

Exercises for Parkinson’s Folks

The single most important thing for a Parkinson’s patient can do to improve their mood, movement, emotions, strength and well being is exercise. For a normal person this is a merely a scheduling activity. For a Parkinson’s patient it is difficult.

Complicated for someone who never did sports at all. A former sports person would be resolute in their efforts. They would have had that former experience in their life of exercise and training that keeps telling them that it will be useful. Perhaps they had to train to recover from an injury. Perhaps they wanted to hit more three-point shots in basketball. Perhaps they wanted to hit the ball a little straighter in golf. Perhaps they wanted to strike out that guy who hit it over the center field fence the last time they pitched to him.

For a parkie it is a matter of walking to the sink to get a glass of water.

LSVT Big is a therapy for getting Parkinson’s patients moving again and keeps them moving. The exercises seem simple to a person who has no difficulty with movement. After twelve or fifteen years of effort she is more resolute than ever to keep exercising.

But it requires organization and her mind refuses to cooperate.