You already know that at AnCan we are all peers, did you also know how much we love sharing resources with you? Well I have a resource that I would love to share! Camp Mak-A-Dream.
The view at CMAD
I had the absolute privilege of attending last year’s YAC (Young Adult Conference) for campers aged 18-35 with my fiancé Brian, and I’ve already applied for this year’s YAC since applications opened January 3rd. I enjoyed it so much that I set a reminder on my phone so I could apply as soon as possible!
I had heard about CMAD from lots of people in the community. From an AYA social worker, friends, and it was even mentioned on our webinar with Nancy Novack from Nancy’s List – Nancy’s Top Ten An Evening with Nancy Novack. To be honest, I was concerned it was overhyped. No place could be that incredible, but it is.
Camp Mak-A-Dream is in Gold Creek, Montana which was unbelievably gorgeous. I had to pinch myself every time I went outside. The ride from the airport (Missoula/MSO) to the camp was mile after mile of scenic beauty. The air is fresh, the grass is green and lush. The airport is used to campers coming in, and even TSA is super nice!
So what was it like?
Staff were waiting at the airport to greet me with snacks and drinks. I met my fellow campers and we chatted. T Staff take care of your luggage and guide you to the bus. No worries about transportation here, they have it covered to and from airport. As soon as I exited the CMAD bus when we arrived, people where cheering for me and rushing to give high fives and pats on the back for a warm welcome. I felt like a rock star.
Brian with Larry, and me with Roger!
We had to get serious stuff out of the way before the fun could begin, as CMAD is medically supervised, I had to check in with the medical team to go over my medications, and they asked questions to make sure they can take good care of me. They also do this so you know where to get medical help if you need it, and I did, twice. Someone is always on call, and you’ll receive the same care as the oncologists office. One of the medical team members even gave me a check up when I had an issue at breakfast so I could get on with my activities for the day, instead of being at the clinic.
That was great, because as a cancer patient, I’ve been in the clinic ENOUGH! Even though I’m an adult, it gave my mom so much peace of mind to know that I was fully taken care of.
They had fun activities planned to help me get to know other campers, and then we had a full buffet style dinner. After dinner we split up to do activities of our choice, I stayed up and played card games with my fellow campers and laughed so hard I cried, and my stomach hurt. Then it was time for bed.
Every single day was full of activities, however they also schedule rest time daily. You never have to do an activity you don’t want to, and if you don’t feel well, you can always rest.
Here are some activities I did:
Photo Credit – CMAD
Archery, cake decorating, geocaching, scavenger hunt, high ropes painting, coloring, tie dying, cornhole, swimming, air rifle shooting (taught and supervised by Montana Parks and Wildlife), zip lining, outdoor camping, campfires, horseback riding, yoga, meditation, journaling, advocacy class (because you can always learn more!), and so much more, this is a short list!
They have a bunch of other stuff you can do like mini golf, outdoor sports, art, it is incredible.
Everyday I had a chance to connect with my peers regarding our cancer experiences, and at AnCan, you already know how much we support this. I laughed, I cried, and I healed. There are lots of rituals and experiences that they have, that I will not share here, because they were so meaningful to me, and the added benefit of surprise complimented that.
Because I didn’t have to worry about anything (my medications, health, food, dishes, no cell service so no calls, current events, etc) it gave me time to truly focus on myself. It was much needed time designated time for me. I conquered fears, I learned new skills, and I left a much better Alexa.
Would I recommend camp to AnCaners?
YES!
Camp is FREE!! (only have to pay for travel, travel scholarships are available)
I hope you will check out what camps they offer and apply for yourself (or you and your carepartner at their caregiver camp). I hope to see and hear about your camp experiences in the future.
Questions about camp experience I didn’t answer here? Email me at alexa (@) ancan.org.
Bang your drum… it could make you smarter and healthier!
I don’t want to work I want to bang on the drum all day I don’t want to play I just want to bang on the drum all day
–Todd Rundgren
Twice in the last several months, the topic of drumming came up in our AnCan Men Speaking Freely group and it generated some excitement both times. So this month’s invite will be on that topic.In my former practice whenever I have given a non-verbal treatment there is a big relief that no talking is involved. In bypassing the verbal and left-brain systems we gain access to a typically unused part of ourselves. I wonder if we can use this approach to cope with our serious illnesses and have a better life?
Our brains have a characteristic called plasticity, the ability to change. You may have heard of this regarding the little finger brain circuit of violinists; it grows as they become proficient. Drummers also have different brains than the rest of us. They have fewer, thicker nerve fibers between the two halves of the brain. They have more efficiently organized motor cortices. (Schlaffke, 2019). Because of this, drummers can do things that we can’t. They can coordinate the two sides of the brain better, and perform motor tasks with greater efficiency. They can play different rhythms with each hand and foot at the same time.
Schlaffke’s subjects had drummed many hours per week for decades. But Bruchhage’s (2020) subjects trained for only 8 weeks and showed several changes in the cerebellum plus changes in the cortex, showing not only cerebellar plasticity but also communication and coordination between the cerebellum and brain sensorimotor areas as well as areas for cognitive control.
Drumming is very complicated, which is why it’s unfair that the lead guitar and vocal guy gets all the girls (Greenfield, J. 2022).
For some reason, there is a close association between beat synchronization (integrating auditory perception with motor activity) and reading ability in children (Bonacina, 2021). Higher synchronization ability predicts better literacy skills. Maybe early intervention involving drumming can improve literacy in kids?
Cahart et.al (2022) showed that drumming can improve behavioral outcomes for autistic adolescents and elucidated some of the neurology involved. Does this mean it could help us?
Drums have been used for millennia for healing, inducing trance, and even psyching up soldiers.
We have learned that drumming is not just about waking up the right brain, but also about connecting the sides of the brain, and the cerebellum with the cortex. It can induce alpha brain waves. It can release endorphins. Even T-cells respond to drumming (Bittman). It induces present-moment experience, which we often work toward to deal with death anxiety. Interpersonal connections are made when people drum together. Despite the effort involved, it induces relaxation. I have come across papers describing drumming and music therapy for a wide variety of emotional problems and currently, there are 8000 music therapists in the US.
How about for us? We see above the possibility of reductions in anxiety, tension, pain, isolation, depression, and over-thinking the past and future. There are many studies of music therapy in ICUs, with patients on ventilators, easing hemodialysis pain, with positive results. Also, helpful with narcotic use, social integration, and depression. MSKCC uses music therapy.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
Well, all this scholarly stuff is really unnecessary to anyone who ever banged a pot with a wooden spoon. Kids love it. Adults love situations where it’s OK to be wild and make noise, such as drumming circles and Pound classes. It’s just fun and feels good.
Dr. John Antonucci
Editor: Dr. John wrote this for our Men Speaking Freely Reminder on Dec 7, 2023. It’s such a perceptive, helpful and instructive piece, AnCan wanted to share it widely.
AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
When, Dr. Bob Gurmankin DMD, a recently retired dentist living with advanced prostate cancer, noticed the frequency with which these dental topics came up in his group, he suggested a two-step support program – 1) a handout on our website, and 2) a dental health webinar in 2024… watch out for this int he New Year.
One handout alone was not going serve all needs so Dr. Bob graciously prepared THREE to kick start our effort to help you maintain a healthy mouth.
Please download whatever is appropriate and spread the word to others who you think may benefit. Dr. Bob Gurmankin can be reached at dr.bob@ancan.org ; if you have questions he has kindly agreed to assist… THANK YOU DR. BOB!!!
Please participate in our Groups where you’ll find more support… onward & upwards.
This could be scary…It’s almost open enrollment season for Medicare!
A dreaded time to receive multiple communications in untold ways that often read like a foreign language. It’s only fitting that we talked about it the day before Halloween.
Join AnCan as we bring experts Amanda Goodstadt, Esq. from Triage Cancer, and Medicare Insurance Broker Kim Umphres to explain all things confusing around 2024 Medicare insurance options, and make this enrollment season a little less spooky and intimidating.
Our panel will explain the whole menu from alphabet soup plans to doughnut holes! Learn the difference between Traditional and Advantage plans and if you can switch between them, what HMOs and PPOs mean, how to sign up to see any doctor anywhere and much more.
Click here for a special handout from Triage Cancer with Medicare resources.
Special thanks to Bayer, Pfizer, Myovant Sciences, Foundation Medicine, Myriad Genetics, Janssen – Johnson & Johnson, Telix, and Blue Earth Diagnostics for sponsoring this webinar.
To SIGN UP for any of our Virtual Support groups, visit our Contact Us page.
So, you have MS. You may also be a Veteran of the United States military. What kinds of benefits and resources are available to those who have served and are now living with this debilitating disease? Here we hope you’ll find our beginner’s guide helpful in your search for benefits and resources.
Having MS and navigating the world of healthcare is dangerously daunting all on its own. Throw in some confusion about VA benefits, and you have a confusion cocktail to contend with (see what I did there?).
Before we dive in, just be warned: there is a plethora of information. Take your time researching, because there are a lot of links in this blog post. Because there’s so much info to take into consideration, we will do our best to update this blog as necessary. Check back regularly for more information as we come across it.
Over this past weekend, Jim struck up a conversation with an Air Force Veteran who has MS. He was surprised to learn that MS is, in fact, not covered under the Agent Orange Act or the PACT Act. MS has not been identified as an illness associated with the substances that these Acts target.
In his conversation, and subsequent research later on, he found that many people (perhaps as high as 60% of people) were denied upgrades to their disability rating. The VA, depending on evidence, will often award up to 30%. However, sometimes specific symptoms will allow for a higher percentage; one of those being chronic fatigue, which gets a 60% rating all on its own.
Jim also states that Veterans who are prevented from working as a result of their MS may be able to receive a benefit called “Total Disability on Individual Unemployment Ability”, or TDIU. This benefit compensates Veterans at the 100 percent rating, even if their overall disability rating may be less than that. Veteran’s symptoms must be Service-Connected (SC), and already have a 60% disability rating OR have “2 or more service-connected disabilities—with at least 1 rated at 40% or more disabling and a combined rating of 70% or more”. You also must not be able to hold down a steady job that would have supported you financially. Definitely click on he link above to read more about it and see if you qualify.
The website states: “The VA provides health care services to Veterans with MS from the time of diagnosis throughout their life, whether or not they have a service-connected or non-service connected status. If an individual had symptoms of MS in the military, or within seven years after honorable discharge, he/she may be eligible for service-connected disability.”
For those who are new to the benefits game:
The website suggests filling out the VA Compensation and/or the VA Pension form available online or at his/her local medical center for starters.
But oh my goodness, that’s a lot to sift through. Here are a few things on that web page that stand out to us:
Info on Filing and Intent to File – Sounds a little silly, but you may be able to receive retroactive payments for the time between when you submitted your intent to file and when they approve your claim.
Specially Adapted Housing Grant (SAH) for those who own their home, or will own their home, this is a grant that allows adaptive modifications to your home. Can receive up to $109,986 as of 2023
Special Home Adaptation Grant (SHA) is the same as the above, but with different qualifications. Can receive up to $22,036 as of 2023
Temporary Residence Adaptation for those who are living in a temporary family member’s home that needs changes in order to meet your adaptive needs. You must meet all the qualifying criteria for one of the two grants above. The amount changes depending on which one you qualify for.
Many people with a chronic or debilitating illnesses will tell you that advocating for yourself and your needs is of utmost importance. When dealing with and anything VA-related, persistence is key.
It’s tricky, and it’s a lot to deal with on top of managing symptoms.
Keep in touch with your primary care provider and your MS social worker. They’ll be able to help you refine your case for increasing your disability rating. They’re an invaluable source of information and help in signing up for various benefits. The provide supportive counseling to assist Veterans on the physical and emotional impact that MS can have on you and you family. They’re there to be your advocate, your negotiator, your case manager, and more.
If you don’t have a social worker on your team, look for the Social Work department at your local VA, or talk to your primary care provider or MS Specialist.
Here’s a summarized list of just some benefits offered at the VA. These programs require the help of a social worker:
Veteran Directed Care – offers monetary help with personal care services and daily living. Veterans are given a budget, and can even hire their own workers.
Medical Foster Home – This is a residency that’s similar to a nursing home, except Veterans are housed in a private home. Caregiving staff is on call 24/7. The VA ensures that these staff are well trained.
Captain James “Jim” Marshall wants you all to know that if you have any questions pertaining to benefits and navigating the system, feel free to send him an email:
Marshall-James@comcast.net
As we mentioned above, this article is just a small portion of info about benefits in the VA system. We will continue to update or even create new blogs as we see fit.
Above all we sincerely thank each of our Veterans for their service. We love and appreciate you!
Don’t forget to check out our MS Peer Support Group, which meets every 2nd and 4th Tuesday of the month
UPDATE #1 – Jim let me know that Amyotrophic Lateral Sclerosis (ALS) “is a presumptive condition for veterans with 90 days or more of continuously active service in the military. Any veteran with ALS should apply for Disability Compensation.”.
He goes on the state “Looking into justifying MS [and ALS] as Service-Connected, it is not as difficult as it seems. If the Vet was exposed to Hazardous Materials, most of us come across such things even in the states, then present VA thinking has MS service-connected because ‘IT IS AS LIKELY AS NOT’ caused by the exposure.”
Here at AnCan, we like to highlight the perspectives of every person that enters our virtual “door”, so to speak. That includes religious perspectives; we are SO proud of how diverse our community is. So, as such, these views aren’t an official AnCan viewpoint.
Now that that’s out of the way, we just thought we would share a more religious perspective on a person’s cancer journey. In her blog, Stingray of Sunshine, author Dana Hendershot asks the question, “If it is truly a God blessing that my cancer was found early, then I also have to believe that God did NOT bless the person whose cancer wasn’t caught early.”
Author, and cancer survivor, Dana Hendershot, goes into depth about those words and phrases that others might deem comforting to someone going through cancer. Phrases like “God has his reasons” are the opposite of comforting for her.
CLICK HERE to read Hendershot’s blog post about her “Theological Quandary”
No matter our religious (or nonreligious) perspective, these sentiments may be felt by many in our community – regardless of which illness you may have.
With terminal cancer, there is data showing that music helps breathing, QOL, psychospiritual integration, reducing pain in chemotherapy, radiation, and helps pediatric breast and lung Ca patients (Ramirez 2018, Hilliard 2003, Burns 2015 Tuinmann 2017, Barrera 2002, Li 2011, Lin 2011). Atkinson (2020) found improvement with fatigue. I couldn’t find any studies focused only on Prostate Cancer.
AnCan takes a holistic approach to your physical and mental health. AnCan also recognizes that a healthy mouth contributes to a stress free life… and all too often your condition, or the meds you take for it, can disrupt dental health. Some of our groups speak frequently about dry mouth (xerostomia), loss of taste (ageusia) and ONJ … osteonecrosis of the jaw.
