My Positive Experience with Hospice Care

My Positive Experience with Hospice Care

Written by Larry Kellerman (MSA Coalition Board of Directors and Support Line volunteer)

I remember the day as if it was yesterday. My wife’s physical condition due to the neurodegenerative disease multiple system atrophy (MSA) was such she could no longer make it to the doctor’s office for a checkup and her doctor had said, “I’ll do a house call.” As several of my wife’s friends stood by the bed and visited, the wonderful doctor who had cared for her for over three years pulled up in front of the house and walked up the driveway.

At the end of her hour-long examination and the ensuing discussion, Dr. P stood up and said “I think it’s time to get hospice here to help both of you.” She left that August 4th with assuring words that we both would have much needed support soon. Three days later we had our first visit by the hospice nurse and by the end of the visit had been given a glimpse of the challenges and benefits of hospice care.

When it’s time to consider hospice care in multiple system atrophy

Hospice care comes at a time in a patient’s life when he/she is not expected to live beyond six months, either because of disease prognosis or the patient choosing to reject a lifesaving treatment. Hospice care is provided by a team and part of that team’s mission is to support the goal of the highest quality of life possible for the patient. In the end hospice care is vital when caring for a loved one who has chosen to stay at home during those last months.

Once hospice has been certified, identifying a good hospice provider is important. In our case the doctor recommended a provider and we stayed with them until the end. There have been individuals who have called the Multiple System Atrophy Coalition call line to discuss their hospice experience and told me they decided to change providers. The goal should remain the same no matter the hospice provider: the best quality of life (QoL) possible for the patient.

Hospice is a team effort

They bring to the team the nurse, support staff, a doctor, a social worker and specialists if necessary; you bring your own skill set and all the friends and family members who support the patient. What I found in the six months we had hospice staff at our house was a good integration between their team and my wife’s friends. In part it was because all of those involved saw what caregiving for an MSA patient did to the health of the caregiver; in part it was because everyone made a real attempt at being supportive of each other.

Hospice staff members are not perfect. You do want to be very aware of what is going on when they are at the house. There are many examples that can be provided by other caregivers, but I can share one example that illustrates potential issues surrounding hospice care.

There came a day when my wife needed to have a catheter inserted and two hospice nurses arrived to do so. As one nurse bent over to insert the catheter her long hair fell over the pubic area and needed to be brushed out of the way. It was the first catheter for my wife and within a few days she had a full blown urinary tract infection (UTI). I called the hospice doctor and told him what happened. He said that is not acceptable and the next time make sure the nurse understands that. So, guess what? A couple of weeks later the catheter needed to be changed and the same nurse arrived, again with her hair down and loose. I had to tell her to put it up, which she did and then completed her task.

I found hospice staff do listen to the caregiver and friends. To address the issue above they allowed me to sit in on a weekly staff meeting and discuss it and a couple of others that had arisen. In the short time I was there they listened and the doctor on the staff reiterated how important it is to follow best practices.

Hospice CNAs are quite important to the overall care of the patient. It is the CNA who helps the caregiver give the patient showers, clean and dress any wounds or open sores and keep the patient’s immediate environment as clean and orderly as possible. The several CNAs who rotated through our house for the six months they served us did a very good job being my “right hand person.”

More importantly, the CNA who had the most profound impact on my wife and me made a special effort to help her feel as much like a woman as possible. Early in the disease progression I had learned how to put earrings in pierced ears and brush hair, and even practiced a few times putting on fingernail polish – not so good at that! The CNA came in and immediately understood there’s more to being a woman than earrings and brushed hair. She would brush and style the hair, put on lipstick and paint her fingernails for those days when visitors would come over or when my wife had a rough night. She did her best to ensure the “best QoL” mantra was followed.

All through this time the hospice social worker and nurse made their regular visits. The nurse’s job was to check vitals and any sores or injuries the patient suffered and ensure there was the needed supply of medications. The nurse would order the meds and bring them to the house, allowing me the opportunity to stay home and be with my wife. The social worker was also a regular and her goal was to help us with our bad days and to be another caring individual with whom we could share those feelings that arise when dealing with a terminal disease known as “Parkinson’s on steroids.” We both looked forward to her visits.

As I noted above, hospice is certified when the doctor ascertains the patient has about six months to live. Sadly in our case, entry into hospice turned on the death clock and six months to the day my wife passed. That day the CNA was not scheduled so it was just a good friend and I who were there as my wife passed peacefully. I immediately called the nurse and within 15 minutes he was there to certify death. Hospice staff called the funeral home to come pick up her body and ensure all her final wishes were met. The social worker arrived to make sure I was doing okay and see if she could be of help. To the end of this six-month saga hospice served us well.

Hospice can benefit both the patient and the caregiver

Caring for a terminally ill patient is difficult no matter the disease. In the case of MSA, a relentless and devastating disease, caregiving is 24/7 during the last months of life. Support both emotionally and medically becomes so important to the health of both the patient and the caregiver. Hospice care can be an integral part of that support. I hope your experience is a good one and encourage you to share your story so that others can understand the positive role hospice care plays. With a goal of “best quality of life possible” hospice can help attain it. I hope your hospice experience meets that goal for your loved one.

CoronaVirus Information for the Multiple System Atrophy Community

CoronaVirus Information for the Multiple System Atrophy Community

While we don’t know if a patient with a neurodegenerative disease is more vulnerable to be infected, we would expect that anyone with a chronic illness is more frail and immunocompromised than other members of our community. In particular, patients who have respiratory compromise would be expected to be more vulnerable because COVID-19 is primarily a disease of the lungs and respiratory tract. Many patients with MSA do develop impaired respiratory (breathing) control and, in more advanced stages, develop pneumonias. As such, we would urge patients with MSA to take especially vigorous precautions against exposure to COVID-19, including frequent hand washing/sanitizing, restricted exposure to others and not delay in seeking medical advice if symptoms of fever, cough or shortness of breath develop.

About The CoronaVirus:

COVID-19 (coronavirus disease 2019) is a respiratory tract infection caused by SARS-CoV-2 virus. Coronaviruses are responsible for about 15-20% of common colds, but there are times when new viruses enter the human population for the first time. When this happens, sometimes there is little to no protection from our previous exposures to coronavirus because the virus is so different. This seems to be the case with COVID-19.

The Infection

COVID-19 has been seen mostly in Asia, primarily China, South Korea, and Japan, but has recently spread to Europe (Italy), the middle East (Iran), and the United States with 44 states now reporting cases. While many have experienced only mild symptoms (runny nose, cough, and cold-like symptoms), some people, particularly the elderly and those with underlying medical problems, have experienced severe disease in the lower parts of their lungs (pneumonia). Young adults have been infrequently affected, and children <12 years old have largely been protected from developing COVID-19 disease.

General Concerns

There are two primary concerns that physicians and scientists have raised. First, the mortality rate of COVID-19 may be substantially higher than for other respiratory viruses. Right now, the mortality rate is estimated to be between 1-3%; in contrast, the mortality rate for influenza is about 10-30 times less (about 0.1%). Undoubtedly, the mortality rate will be less than currently estimated since we don’t know the true number of mild infections; nevertheless, there remains a real concern that COVID-19 is more severe than what we are used to seeing with other seasonal viruses. Second, the virus spreads efficiently, being transmitted before symptoms occur and staying in the nose and saliva for days to weeks after symptoms improve.

COVID-19 Misconceptions

There have been numerous misconceptions that have arisen.

The biggest misconception is that masks are not useful for slowing the spread of COVID-19..

Masks are essential for slowing the spread between people:

  • If a person is sick (even asymptomatic) wearing a mask will help keep them from spreading the virus by trapping their air particles in their mask.
  • Masks are now believed to help protect individuals wearing them from getting COVID-19.

Conclusion: You should wear a mask and you should avoid people who are not wearing a mask.

Recommendations for the MSA Community

This is an important time to be prepared but not panicked. Practical steps should be taken by MSA patients and those in close contact with them to lower the risk of exposure to COVID-19:

  • Use careful hand hygiene by washing hands frequently with soap and water or hand sanitizer that contains at least 60% alcohol. In other words, wash your hands like you just touched hot peppers and need to take your contact lenses out.
  • Wear a mask and stay physically distanced (at least 6 feet apart) if you have visitors or must go out.
  • Require any visitor (home nurses, etc.) to wear a mask when in your home.
  • Stay home as much as possible and avoid crowds of people where the risk of spreading and thus getting COVID-19 is high.

These important strategies can help lower your chances of contracting COVID-19.

For the most up to date information on COVID-19 please reference the CDC website.

Watch the MSA Coalition’s Webinar

MSA Care Amidst The Pandemic:

COVID-19

Recorded on April 20, 2020

Resources on MSA and COVID-19

The Dysautonomia Center at NYU issued this guidance for MSA patients, including answers to frequently asked questions. This article is an especially useful compendium and we highly recommend it. If you are wondering whether to keep your appointments, or how to handle home health care visits, this is a great resource.

General COVID-19 Information
In the United States, we rely on the Centers for Disease Control and Prevention for information and advice; the website is here.

Information for those enrolled in the Verdiperstat Phase 3 Clinical Trial
Biohaven Pharmaceuticals have provided some answers to patient questions regarding the ongoing administration of this important clinical trial during this time of uncertainty. Read our blog with Q&A here.

Self-care in a distressing time
Living in the time of COVID-19, and especially when also dealing with a difficult disease, requires great psychological energy. Many mental health professionals have good advice for all of us as we practice social distancing, sheltering in place, or, in some cases, are quarantined. Here are a few good practices:

  • Stick to a routine
  • Get outdoors, if you are able, at least once a day for thirty minutes, maintaining social distancing guidelines
  • Stay hydrated and eat good food
  • Get your COVID-19 information from reliable medical sources
  • Try to focus on the good in the world, the people who are helping
  • Remind yourself that this is temporary
  • As much as possible, be kind to yourself and patient with those near and dear to you

If you need help, reach out to appropriate resources and providers in your community. And again, we at the MSA Coalition are a phone call away at 866-737-5999. We will return your call and try to direct you to assistance.
If you would rather use email, our address is info@multiplesystematrophy.org. You can see updated information at our website, www.msacoalition.org.

Communicating with Others
The Coalition maintains several Facebook groups to provide those in the community with information and a place to ask questions. These groups and pages are monitored, and include the following:

The MSA Coalition Facebook Page

Public Groups:

MSA Coalition Public Discussion group (7500 members)
MSA Research News group (2900 members)

Private Groups:

MSA Buddies group (4300 members)
MSA A Patients Journey group (400 members)
MSA Widows and Widowers group (200 members)
Children of MSA Warriors (270 members)
MSA Coalition Volunteers (700 members)

US Regional Groups (Private):

MSA New England regional group
MSA Middle Atlantic regional group
MSA South Atlantic regional group
MSA Northeast central regional group
MSA Northwest central regional group
MSA Southeast central regional group
MSA Southwest central regional group
MSA Mountain regional group
MSA Pacific regional group

We are here to help!
This is uncharted territory for all of us. It will take all of us acting together for the common good to flatten the curve and get through it. History shows us other generations have faced crises and emerged stronger, and we all know that the MSA community shows its resilience time and time again. Together, we are strong.

Stay safe. Take care of each other. Wash your hands.

Signs It Could Be More Than Parkinson’s Disease

Signs It Could Be More Than Parkinson’s Disease

Close to one million people in the US have a diagnosis of Parkinson’s disease (PD). Unfortunately, for a small percentage of these people the diagnosis just doesn’t seem right. They feel like something more is wrong. Their medicines may not be very effective. They might have severe dizziness and even be prone to fainting. They just sense the disease is progressing faster than expected.

So, what is it? Is it Parkinson’s disease or is it something else?

The answer is not easy, but many who feel they have more than Parkinson’s may in fact have multiple system atrophy (MSA). MSA is a very rare disorder that has similarities and features of Parkinsonism. However, it is so rare that many physicians are unfamiliar with it and so the diagnosis is not considered. As a result, a likely diagnosis of MSA might be delayed by years and even missed all together. What’s more, due to many symptoms that could possibly be attributed to other conditions diagnosing MSA can be challenging, even to the most experienced doctors. This can be very frustrating to those who know it is more than PD.

Signs It Might Be Multiple System Atrophy Instead of Parkinson’s Disease?

Here are some clues as to whether it is multiple system atrophy or Parkinson’s disease. One of the easier distinctions is between PD and MSA-C (the cerebellar type). If the patient presents with unsteadiness while walking, uncoordinated arms and legs, bladder disturbance and/or dizziness when standing the diagnosis is more likely to be MSA-C. On the other hand, if a person looks Parkinsonian the distinction can be harder, but there are clues:

  • In the earlier stages of MSA-P (Parkinsonian type), which is often when people have just been told they have Parkinson’s disease, some patients will fall often. Frequent falls also occur in Parkinson’s disease, but it typically occurs 10-15 years after diagnosis.
  • In patients with MSA the classic Parkinson’s drug L-Dopa may work initially but will stop working very quickly. It can continue working in PD patients for many years.
  • Dementia is not associated with MSA however, it does occur in patients with lewy body Parkinson’s disease.
  • Early autonomic nervous system symptoms such as low blood pressure when standing (neurogenic orthostatic hypotension) and issues with the bladder are often signs of possible MSA in patient’s diagnosed with Parkinson’s.
  • Vocal cord issues are less common but very typical in MSA and much less common in PD. Some examples include difficulty getting words out, odd sighs and even falling asleep during a conversation.

The above are clues, so if you suspect something more is wrong than Parkinson’s it is important to visit movement disorder or autonomic nervous system specialist for further evaluation and testing,

Knowing that it is MSA and not Parkinson’s is Important!

Over the years MSA Coalition Board Members have heard the frustration about a slow diagnosis after the initial diagnosis of Parkinson’s. While MSA is fatal, knowing the correct diagnosis, is still important.

Multiple system atrophy affects “multiple systems” in the body. As a result, while there are not MSA specific treatments, treating the various symptoms from sleep disorders, urinary and bowel issues, blood pressure control, etc. can vastly improve quality of life. The earlier an MSA patient is diagnosed, the earlier doctors can establish a plan of action to improve symptoms that can be very disabling. Another factor is that Parkinson’s medications typically stop working in MSA patients.

An early diagnosis also allows patients and their families to spend quality time together while they are still able. It also provides time to prepare for end-of-life issues, such as preparing wills and living wills.

Research To Find MSA Biomarkers and an Earlier MSA Diagnosis

An important goal of the Coalition’s MSA Research Program is to fund and encourage the development of biomarkers to distinguish PD from MSA at a much earlier stage. The stakes are high. An accurate biomarker could lead to quicker development of treatments. In fact, a concern in past clinical trials of MSA treatments that failed is that maybe the patients in the trial are too late stage to show effectiveness. Increasing the number of known early stage MSA patients could improve the likelihood of finding treatments and even a cure.

Every Penny Counts

Every Penny Counts

Fundraising is the most important activity that any family affected by multiple system atrophy can do to help the cause. Unfortunately, fundraising can be intimidating and even scary.

But, it doesn’t have to be.

Every year the MSA Coalition benefits from simple and inexpensive fundraising activities. Here are four easy ideas that fellow members of the MSA community are already doing to help:

Four Simple Ways to Raise Money For Our Cause

 

1) Spare Change Collection

 

Jenna Dexter shared this idea with us:

My dad, Richard Dexter, was diagnosed with MSA-C in November 2015. In 2017, our family and friends began to collect all the “change” we could find when we were out and about to fill up my dad’s change jar. My dad decided he would match all the change we added to his jar each year and donate the full amount to the MSA Coalition during the MSA Family Conference. This year we were able to donate $200 to the MSA Coalition. This is our family’s way to help contribute to all of the good work being done to help fight this rare neurodegenerative disorder that causes a multitude of symptoms such as impairments to balance, difficulty with movement, poor coordination, bladder dysfunction, sleep disturbances, and poor blood pressure control.

Imagine how much we could raise if every family in the MSA community donated their spare change.

2) Shop Amazon Smile Instead of Amazon

If you are already shopping on Amazon, then why not switch to Amazon Smile? It is the exact same platform, with all the same deals and Amazon Prime free shipping.

The only difference?

With Amazon Smile you can select the Multiple System Atrophy Coalition as your charity to support. A small percentage of every purchase is donated to us by Amazon. In total, with very low participation, the MSA Coalition has already received more than $4,500 from Amazon.

Just be sure to go to Amazon Smile instead of Amazon. It is super easy and only requires you to keep shopping!

Imagine how much money we could get from Amazon if everybody that knows an MSA patient shopped on Amazon Smile? It’s a lot!!!!

Here is what Raymond “Bill” Werre says about Amazon Smile:

Just for your information, there is a way to provide funds to The MSA Coalition without any cost to you. If you buy anything from Amazon go to https://smile.amazon.com/gp/clpf…

Then find The Multiple System Atrophy Coalition and select it for your donations. Anything you buy from Smile.amazon.com will result in a donation to the MSA Coalition (including medical supplies like adult diapers). I don’t buy much from Amazon, BUT I have provided $5.48 this year as a result, 1000 like me would be $5480 and 10000 like me would be $54,800.

3) In Lieu of Gifts

This idea is perfect for the holidays, birthdays, anniversaries and more. Host a party and ask for donations to the MSA Coalition instead of gifts.

Use the MSA Coalition’s GoFundMe platform to easily create a personalized In Lieu Of Gifts fundraiser. It is a great place to tell your story, share pictures and a video and it comes with your own personal URL. Now all you have to do is invite people to your party and share the link for them to make donations instead of bringing a gift.

 

4) Self-Sacrifice For The Cause

What activity is an indulgence that we could do without? Is it a cup of coffee at the cafe? A movie at the theatre? Dinner out? Others?

To support the cause give up an indulgence for a day, week or month and donate the difference to the MSA Coalition. Challenge your friends and family to do the same.

Donate your spare change to the multiple system atrophy coalition

A Dream Come True

A Dream Come True

Jenna (Byron) Amster and her family justJenna (Byron) Amster on her wedding day with her dad who has multiple system atrophy
celebrated her beautiful dream wedding. Jenna
married her best friend, Josh, on 9/21/2019. It was the most special, incredible and magical weekend. Jenna and her father Marc’s shared dream was to have him walk her down the aisle and have a father / daughter dance. They did both.

Marc has three daughters. Jenna is his oldest and is the primary caretaker and healthcare proxy for him. They are best friends, self-described as two peas in a pod. They are always there for each other in every way, no matter the circumstance or what is sacrificed.

A few weeks prior to the wedding, Jenna’s dream wedding dance was in doubt. Her dad is battling Multiple System Atrophy (MSA-c) and is deeply impacted by Neurogenic Orthostatic Hypotension (low blood pressure upon standing). As such, he no longer has the ability to stand on his own and also faces several other debilitating symptoms.

 

Pulling Off a Dream Wedding While Facing Down MSA

Knowing the health challenges that Jenna’s dad was likely to encounter from Multiple System Atrophy, the wedding party prepared to overcome them. Preparation was imperative for making sure the weekend was as beautiful as possible despite the challenges that surely would arise. Marc’s family has a special care team in place 24/7 comprised of nurses, techs and aides, all of whom are medically trained and have learned the ins and outs of MSA through working with Marc. His care team was by his side all weekend long ensuring his health and safety were in check

The family also brought a few things for the wedding weekend to ensure Marc’s safety and comfort:

  • A hospital bed (rented) for the hotel room so they could have all the functionality like they have for his bed at home.
  • A portable suction machine to catch his secretions and to avoid any choking or aspiration.
  • A Nutribullet blender so he could still enjoy the foods he loves but in a smart and safe manner.
  • Liquid thickener packets so he could enjoy and tolerate his drinks.

The Wedding Day Arrives and Jenna Tells the Story


Jenna Byron Amster and her father Marc Byron“The day of the wedding was 90 degrees and humid. Dad was in a full tuxedo, looking as sharp as ever, but as everyone affected by MSA knows, heat is very scary as it can drop blood pressure. To combat the heat, we had cold wet towels hidden under his wheelchair to cool him down when needed. He always rocks sunglasses as he has extreme sensitivity to sunlight. Another of his MSA symptoms is extreme heightened emotions, whereby, he could instantaneously start hysterically crying or laughing at any given time. We all embraced it as we always do and loved every moment of him soaking up this most special day. My mother pushed his wheelchair down the aisle while I held his hand and walked right next to them.

We have been practicing our father/daughterMarc Byron using a standing wheelchair to dance with his daughter Jenna at her wedding. dance since I was a little girl. After he was diagnosed with MSA in 2015, we practiced dancing daily – we qualified it as his exercise for the day. I filmed every single one of our dances leading up to our wedding so I could continue to show him how strong he’s been for all these months, but I was growingly concerned about my dad’s ability to not quickly faint. His tolerance for being in a standing position was becoming more and more limited, so we had to come up with a solution to make this work.

A few weeks ahead of the wedding we attended the Abilities Expo at the NJ Convention Center. At the Expo, we met this gentleman named, Scott, who is a representative for the Standing Wheelchair. We made plans to have Scott come to our house so dad could demo the chair. I shared with Scott that the only time Dad would use the standing chair would be for our father daughter dance at the wedding and that we were not in the market to buy one outright. Scott was so thoughtful and generous that he said he would LOVE to pay it forward and allow us to rent his demo chair for the wedding weekend.

When Scott brought the standing wheelchair to our house the weekend of the wedding, dad and I practiced multiple times a day. He was able to dance with me standing upright for about 30 – 60 seconds before we knew he had to bring him to a seated position and elevate his legs. He did not faint or lose consciousness during any of our practices. We also had at least two other people, whether family members or care providers, spotting us as we danced, and helping to reposition dad when needed.

Despite having MSA, Marc Byron dances with his daughter Jenna at her weddingOn the day of our wedding, with all the overwhelming emotion, excitement, nerves, etc., after a hot outdoor ceremony, it was time for dad and I to dance. As a gift to my dad, I wrote him a beautiful love song that our band so generously learned and sang for our dance. The moment had come, my mom had just finished reading the speech my dad had written for us, and up he went in the chair. He was able to stay upright standing during our dance for 45 seconds before his pressure dropped. He lost complete consciousness. My mom, sisters and his nurses ran over to us, helped get him into a seated position and raised his legs. He came to in about 3 seconds. Our family had anticipated this, which is why we were so prepared; but this was something our 250 guests had never seen before so it definitely caught people off guard. Although they were touched, it was also very frightening. Despite the episode, Dad and I finished our dance by hugging, singing, crying and smiling. It was one of the most beautiful moments that the whole family and our friends said they were lucky to witness. It was truly the most special and magical moment that I could ever have.

Dreams really do come true!

I hope this inspires others with MSA or affected by MSA to live their dreams and imagine the impossible, because we did, and it was the best day of our lives!!!”

Fundraising for the Multiple System Atrophy Coalition

Jenna and her family have created two fundraisers, one through Facebook and the other on GoFundMe Charity Page, both in support of the Multiple System Atrophy Coalition.

Jenna’s Personally Written Song To Her Father