Life has been a bit rough around the edges lately. We are in fact, very, very lucky. The perfect home for mobility issues, the perfect vehicle, both the VA and Medicare helping us pay most bills, Christina coming to the house 3 days a week, a counselor who comes to the house (!!!) to chat with Russ, a great and caring neurology staff right here in Durango and continued communication between the two of us.
We are lucky because Russ is a master at keeping up with exercising. He rides his tricycle every day, does arm and leg exercises, does his speech, plays board games and is a master at all things clean. So may folks with PD/MSA give up on showers, shaving, and brushing teeth. Russ now spends about an hour each morning doing all, finishing by wiping down his sink and counter. He would do the dishes, but I had to ask him not to after he fell onto/into the dishwasher a few times.
Two neurologists ago we were told Russ had MSA (Multiple System Atrophy), but at the time it was more than we could handle. It is a type of Parkinsonism and we knew of Parkinson’s Disease so we went with that. There is the good, the bad and the ugly to both of them.
Dr. Edgar has walked us through MSA and we are finally getting a grasp of it’s magnitude. The good part of MSA is that Russ will most likely never have tremors. At least there is one joy to count on. Another good-bad is that no drugs help so Russ has discontinued all Parkinson’s drugs and no longer lives by alarms going off to remind him to take his meds. He has been on and off multiple drugs, none have made a difference. But one has to carry hope through this journey or life just becomes torture.
Russ’ symptoms have been more pronounced lately. I am living with a new person and I cannot expect him to react with old ways, old likes, old interests. He is no longer that person. Dr. Edgar really drove that home to both of us yesterday!
How is MSA affecting Russ? What are we seeing? MSA affects the middle line of the body. Problems appear with the frontal portion of the brain, swallowing, heart rate, digestion, urinary incontinence, elimination and balance & motion. At this point every one of these are a part of his days.
Sometimes he has muscle issues in his legs; his limbs moving involuntarily, more in the day time than night. He generally has trouble sleeping, but part of that is the 3 to 6 times he gets up at night to pee.
The frontal lobe of his brain is atrophying. That has huge ramifications on his/our life. There has been a gradual and progressive decline in behavior, language, movement, and memory. Though we are told each patient’s timing varies, Russ’ symptoms have advanced in the last year.
For Russ this means difficulty planning ahead, organizing, difficulty in a social setting (his table manners have gone the wayside), and communicating with others; he responds to questions with short answers, but has difficulty initiating conversation.
I have noticed most recently that he can still read a book, but TV takes precedence. He is actively engaged in reading, but TV is passive. TV favorites are HGTV, tennis, rodeo and ‘Shark Tank’. These shows entertain and he does not have to follow a story line from beginning to end. Fortunately, I like all but 'Shark Tank', but even that is fine, just a tad argumentative for me.
The two biggest systems affected to date are the increasing frontal lobe issues and his heart. Dr. Edgar told me it was up to me to curb my reactions to what appear to be avoidable accidents. He will crash his electric chair into a wall because he is looking at his phone while ‘driving’. As often as we talk of “one thing at a time”, it is not a simple task. That is why for the last couple of years we have been working on things to be a part of his muscle memory; at this point, that opportunity is over and he has what he has which will decline over time. Just plain sad. When he uses deplorable table manners, shoveling food into his mouth, Dr. Edgar says “encourage him', distract him, talk to him to help him slow down, but honestly, he does not have the capacity to think it through. So I change his napkin and placemat almost daily and give thanks that he can still feed himself!
We left his neurology appointment yesterday grateful to have a bit more understanding of what he can and can’t control. Several times he asked…”will it get worse?” and Dr. Edgar answered “yes’ each time.
Then…around dinnertime we get a call from his cardiologist. Russ had a pace maker put in a couple years ago and sitting in our bedroom is a remote monitor. Periodically they do a complete reading, but if something abnormal appears they will call you. Last night was our turn. Russ is experiencing more and more times of atrial fibrillation. He recently had 14 bouts with the longest lasting 17 hours. This means his heart is beating at an abnormal pace. Our cardiologist does not suggest he take an anti coagulant for a long period of time. She does suggest a Watchmen Device. However this requires surgery and Parkinson’s and anesthesia are a very tricky mix. They are known to speed up the disease in many people and so neurologists warn against surgery if possible.
A Watchmen Device- “This permanent heart implant effectively reduces the risk of stroke—without the risk of bleeding that can come with the long-term use of warfarin (the most common blood thinner). Atrial fibrillation, or AFib, affects your heart’s ability to pump blood normally. This can cause blood to pool in an area of the heart called the left atrial appendage, or LAA. There, blood cells can stick together and form a clot. When a blood clot escapes from the LAA and travels to another part of the body, it can cut off the blood supply to the brain, causing a stroke.”
They go in through the groin up into your heart and implant a small umbrella in the left Atrial which prevents clots from forming and reducing the risk of a stroke. The huge question is should this be done and if so does Russ want it done. Quite obviously age and MSA play into the results. Quite obviously he must consider his DNR and Advanced Directive wishes. His comment to me this morning was “If I have a stroke, I want it to end in death.” I have to say, if it were me I would have the same attitude.
We wait for his medical team to confer with one another. We ponder our own thoughts in the meantime. We know going forward, the way is paved in decline. That is pretty darn hard to swallow. It gives me enormous empathy to others who also deal with life’s challenges. I cry for Russ hearing words “yes it will get worse”. I cry for Russ with the pieces of his person disappearing because he no longer has the dexterity, balance, or physical capability. I cry for who we were and try to capture who we are now. I search for hope and joy.
Not every moment of every day is difficult. For Russ they can be long, tedious and often filled with boredom. We try to vary activities. He continues to astonish me in every way and he gifts me by educating me in patience. perseverance, and sadly, acceptance of things he cannot change.
May the new year bring a kind of peace that knows we are loved.