My Motto: LFT-PFT

I started this blog nine years ago on a whim. I wanted to capture my thoughts, experiences and emotions of living with this condition called Kennedy’s Disease. In the forty-plus years of being associated with this progressive neuro-muscular disorder, I have had my share of ups and downs. Many of my 860 blogposts are a testament to my life of living with Kennedy’s Disease.

A life where…

• Hopes have risen and been dashed
• Friends made and lost
• Lessons learned and relearned
• Experiences documented and shared

Fortunately, my spirit remains strong. It will not allow me to wallow in self-pity for long. Whenever my resolve is tested, my spirit wins every time.

If I consider how bad things can be in the years ahead, what I can still accomplish today becomes a blessing. When I find myself feeling sorry for what I can no longer do, I take a moment to look back on a life filled with wonderful memories. When I lose hope, the love of my family and friends lifts me up.  

My moto is “Live for Today and Plan for Tomorrow.” I do not want to let negativity ruin my day. Yet, I want to be prepared for what might be in my future. I find if I plan for it, the experiences never seems quite as bad.

All of you living or associated with this rare disorder are my extended family. Thank you for being there for me when I need a lift.

Stay upright!

Long-Distance Caregivers

Image via Pexels

How to Get to Know Your Loved One’s Neighbors

Claire Wentz contacted me and asked if I would be interested in a guest post on caregivers. I said I would be interested if it is relevant to those of us Living with Kennedy's Disease or another type of progressive neuromuscular disorder. Below is an interesting primer on the subject along with links to additional resources. Thanks, Claire.

Summary

Caregivers ensure the safety, health, and happiness of those who cannot care for themselves. Many people find themselves in a caregiving position as senior loved ones age and develop common disabilities. If you are a caregiver for a family member that lives in another area, tap into the power of community to help. You may be surprised at how many neighbors are willing to lend a helping hand when it comes to caring for seniors.

What is a Caregiver?

When a person is unable to live alone safely, they often rely on a family member or loved one to step in as caregiver. A caregiver helps the person for which they are caring with the activities of daily living. They typically assist with basic living needs such as bathing, dressing, and grooming as well as any special medical needs. Caregivers are responsible for making sure there are meals prepared and that the person in need of care eats enough. They ensure that all housekeeping and transportation needs are met as well. Caregivers are also intermediaries between the cared and medical professionals-- doctors, nurses, specialists, etc. Furthermore, caregivers are a source of companionship for people. They help prevent loneliness and the medical complications that can result from it.

While people of all ages and conditions need caregivers, many people don’t find themselves in the position of needing one until they approach their senior years. As we grow older, health complications tend to increase. Because of this, older Americans are more likely to live with a disability than younger people. According to survey research from 2015, about a quarter (25.4 percent) of Americans ages 65 to 74 are living with a disability. About half (49.8 percent) of those ages 75 and older report living with a disability. Mobility problems are the most common health complication among older Americans.

When your senior loved one is incapable of taking care of themselves due to a health complication, it’s not always possible to pack up and move to where they live. In these situations, many people find themselves acting as a long-distance caregiver. As a long-distance caregiver, you face many challenges. Luckily, there are resources that can help.

It Takes a Village

We often here “it takes a village” in relation to bringing up a child, but the term can be equally meaningful when it comes to the care of seniors. America was founded on the idea that a person can be whomever and do whatever they want, which leads a lot of us to search for opportunities away from home. We don’t have the same cultural values as places like Japan, where children are expected to dutifully tend to their parents. It is possible to adhere to your American independence while caring for your older loved ones; it just takes some networking and creativity.

Organizations such as A Little Help connect seniors and their caregivers to the community around them. When the caregiver can’t be around to assist with certain activities, the service allows them to reach out to friends and neighbors who can. Organizations like A Little Help allow seniors with disabilities to maintain independence into their 80s or 90s, even when their primary caregiver doesn’t live in the same area. Beyond normal caregiving services, they can also help seniors with transportation, household and yard maintenance, and maintaining a healthy and active social life.

Beyond working with programs like A Little Help, long-distance caregivers can connect to their senior loved one’s community in other ways:

●     Plan a neighborhood potluck for the next time you are in town. Have neighbors and friends bring over their favorite recipes and set up some get-to-know-you games. Don’t ask for help during the party, but do have a guest book where people can log their phone numbers and email addresses.

●     Create a street or neighborhood Facebook group people can join. People are more likely to lend a hand if they know there is a network they can reach out to when they need one as well.

●     Go on walks with your senior loved one around the neighborhood. Stop and talk to people as you pass them walking their dogs or if you see them hanging out in their garages or front porches.

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 Should you wish to learn more, visit Caring FromAfar or email Claire by clicking on her name.

What Can I Do?

One of the most frequently asked questions that the Kennedy’s Disease Association (KDA) receives is, “What can I do to help ease the symptoms?”

There are some commonsense principles that can help minimize the impact of certain symptoms as well as maintain, or improve, your quality of life. Some of these are also good for your general health.

A few examples follow:

• Stay active – This is the best way to maintain your quality of life. Keep engaged in activities that stimulate your mind, spirit and body. Look for new activities and hobbies that will be interesting and fun. 

• Stay engaged – Maintaining a support system is critical to your mental and emotional health. Family and friends help keep your mind stimulated. A good laugh is one of the healthiest activities you can participate in. 

• Maintain a healthy weight – The more weight you carry, the more difficult it is to remain active and mobile. Excess weight also affects your heart, lungs and joints. 

• Exercise regularly, but smartly – Some exercise is good, but too much can be detrimental. I have found that performing light exercises every day minimizes or eliminates joint and muscle pain. It also stimulates my heart and lungs as well as my motor neurons and muscles. There is a ‘Smart Exercise Guide’ on the KDA website you might want to review. Ask your doctor to recommend a physical therapist who is familiar with progressive motor-neuron diseases. 

If you aren’t already active or engaged, “don’t try to add too much into your daily routine all at once.” Habits need to change over time.

1. Discuss and prioritize the opportunities with your family and friends. They are an excellent support system. 
2. Select the highest prioritized opportunity. 
3. Transform the opportunity into an activity that you feel you would enjoy doing. 
4. Develop a plan on how to implement the activity. Write the steps down – visualize them. Note: If you have other health issues, check with your doctor before implementing any exercise program. 
5. Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun. 
6. Implement your plan. 
7. Track your results and review weekly how you are doing. 
8. If necessary, adjust your plan. 

But, always remember to...

“Be safe—Pace yourself—Don’t overdo—Have fun.”

Let the light shine in

Happiness is a nine-letter word

Several people living with Kennedy’s Disease have mentioned bouts of depression. Many more, including myself, mentioned that anger and frustration was more prevalent in our lives since the onset of KD. I have discussed frustration several times in this blog. I do not have the cure (still working on that), but I found a good article on ways to feel happier and wanted to share some of the thoughts.

In the Yahoo Health article, "Six Natural Ways to Feel Happier," the author discussed some basic and easy ways to overcome the blues.

Sweat away the sadness – Research proves that exercise can improve mental health. I wrote about my experiences with endorphins a few times. The article said that working out can relieve mild to moderate depression as well as antidepressant medication because it stimulates dopamine in the brain (the feel good chemical). Even exercises like Yoga or stretching can help keep depression at bay.

Eat good food – Fish that contains Omega 3 fatty acids enhances areas of the brain that effect moods. Just by eating salmon, char, sardines or other fish (low-mercury swimmers) twice a week can make a big difference in your mood. Having a baked potato will also help (dose of vitamin B6). Also, foods rich in folate (e.g., spinach, beans and oranges) are filled with serotonin that will break through most blues.

Have sweet dreams – getting seven to eight hours of sleep each night is one of the best ways to beat the blues. People that have insomnia are five times more likely to experience depression. The article gives some helpful hints to help you go to sleep easier and stay asleep.

Claim some quiet time – Meditation is as good as most medications in reducing depression. From my personal experience, it does this and so much more. If you feel uncomfortable trying meditation, just try ten minutes of deep breathing each day. There are some deep breathing exercises in the Smart Exercise Guide.

See the light – Depressed people who experienced one hour of bright light each morning for five weeks experienced a 54 percent improvement in symptoms. Flick on an energy light to read the morning paper or spend some time in the early morning sun. Try sitting near a window where light streams in.

Phone a pal – It is not surprising that lonely people are more depressed. Strengthen bonds with at least three good friends. Set regular times where you meet at the park (or at the library or mall). Friends will make you feel better almost immediately.

I also recommend a hobby ... something that you enjoy and takes your mind off everything else.

Quote: Best-sunrise-quotes-on-pinterest

Growing old with Kennedy's Disease

When initially diagnosed with ALS, I was devastated. I could live five years—perhaps ten if I was fortunate. When Dr. Fischbeck later correctly diagnosed me with SBMA, I felt I had a new lease on life. Then, the fears and paranoia showed up again. I was my own worst enemy. 

One thing I noticed while living with forty years of progression of Kennedy's Disease was that what negatively affected me (mentally and emotionally) in my late twenties and thirties is not a concern today. Most were unfounded fears of what could be, not what was. What I thought was earth shattering back then is something that I live with every day, and most often do not even consider today. In other words, I have matured with the disease and discovered more about it and about me.

In the beginning of my battle with this disease, I feared the worst and hoped for the best. I told little 'white lies' when asked if anything was the matter. Admitting I had the disease was something out of the question—especially at work. I looked at it as a weakness, something that will make me less of a husband, father, manager, and co-worker. Today, I realize that the real weakness was my inability to be honest with others and myself. Life would have been far simpler.

I now know living with the disease is never as bad as what I imagined. And, in some ways, it is worse. The most difficult part about living with the disease today is seeing how far my strength has deteriorated over forty years. The most satisfying part is knowing I am still active, engaged, enjoying life and helping others.

Today, "safety is job #1." When I am injured, I am not the only one that suffers. My wife has to change her life to accommodate my injury. That is why I error on the side of caution.

The Serenity Prayer, "God grant me the serenity to accept the things I cannot change (i.e., Kennedy’s Disease diagnosis), the courage to change the things I can (i.e., my bad habits, outlook,  attitude and patience), and the wisdom to know the difference." 

In closing, I leave you with my last and probably my most important learning. People are there for you when you need them.

Image: lawrenceofcyberia.blogs.com

Photo:  Trip Adviser                               

How Can I Help?

Acceptance is something I have written about several times over the years. Unfortunately, it is not a light switch that can just be turned on. It is not something that automatically means you are happy again or brings you comfort. In fact, there are still things in my life that I have not fully accepted yet.

This process of rediscovery is a never-ending journey for me. Every time I accept something new about my condition and myself, it is like another awakening. In addition, whenever I find a new way to express myself and help others, it opens another door.

Several years ago, I was watching "Saturday Night Lights." The high school football team was down 26 to zero at the end of the first half. The coach ended his halftime pep talk to his players with the following. "Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself."

Dr. Phil says it another way, "What happens in your life will affect you, but it does not have to define you."

As I travel life’s highway, I need to focus on the moment, forget about the past, and not be too concerned about the future. The only thing I have any control over is this my attitude at this moment.   

Another favorite saying of mine is, "Nothing comes into existence uninvited." If I worry about what could be, it will probably come to pass (or maybe even something worse). On the other hand, if I focus on what I can do today to make a difference for others, then the past and the future really does not matter.

So, my question for you is...

It's Never too Late

The quote below is taken from Eric Roth who adapted the script for the movie, "The Curious Case of Benjamin Buttons." The scene is "The letter to Caroline." I have changed a few words to make it more focused for my message about 'LIFE.".

     It’s never too late to be whoever you want to be.
     There's no time limit. Start whenever you want.

     You can change or stay the same.

     There are no rules to this thing.

     You can make the best or the worst of it.

     I hope you make the best of it.

     I hope you see things that startle you.
     I hope you feel things you never felt before.

     I hope you meet people who have a different point Of view.
     I hope you live a life you're proud of, and if you're not,

     I hope you have the courage to change it.

The above is a powerful statement of our ability to make a difference in the world. The Kennedy’s Disease Association and its website is one example. The Kennedy’s Disease Facebook Groups are other examples. There are also many other individuals who found ways to help those of us seeking answers or needing hope. And, we all need hope.  

The good news…

It is never too late—that is the important message. It gives us hope. 

FYI - you might enjoy reading this blog post on it never being too late. 

Anyone for a game of Jenga?

In the right column of this page is the following explanation as to how I see “living with Kennedy’s Disease.”

"Life is a succession of lessons that must be lived to be understood." I have used the analogy that learning to live with Kennedy's Disease is like trying to cross a stream without getting wet. The only way is by using the stepping-stones provided (my chosen life's path). Each step is a "life experience" and I must come to terms with that experience (regain my balance) before being able to take the next step. It is a slow and often challenging journey, but I am finding it very fulfilling.

Now that I have difficulty safely walking, the analogy just doesn’t seem to fit my situation any longer. Recently I changed the photo at the top to a stack of stones. I felt the balancing act of creating a new world, a new way of living, was more relevant to my current situation. If I replace one stone with another and it doesn’t fit well, it could come crashing down.

The ability to live with Kennedy’s Disease, or any other progressive neuromuscular condition, requires constant adaption and acceptance as the disease progresses. For example, instead of requiring a cane or walker, you now require a scooter or wheelchair. Instead of getting by, it becomes a matter of constant adjustments to your daily life and routines. At some point, it is no longer about substituting or leveraging; it is about knowing when to ask for help, and how to let go of certain treasured capabilities. 

This morning I remembered playing the game of Jenga with family and friends. For those who haven’t played it, Jenga is a bunch of wooden blogs that are stacked about 12” tall at the beginning of the game. Players take turns and remove (pull out) a block. You don’t want to remove a block that causes the entire stack to crash. 

Living with a progressive condition is like playing Jenga – only you are the stack of blocks. When a block (capability) is removed, you have to adjust (adapt) to maintain your balance. At some point, you can’t make adjustments and you have to cling to the other blocks in hopes the entire stack (your self-worth and beliefs) is still strong enough to hold together. The minute you give up those essential elements of life, you risk crashing. As the condition progresses, more often, the other blocks are your family and friends. They step in (understand, adjust and adapt) to keep you standing. 

Treasure those other blocks that help support you when another block (capability) is weakened or removed.  

A friendly reminder

Don’t forget about the KDA Forum. 

The forum is a place where you can ask and answer questions, give your thoughts and opinions, and learn more about living with Kennedy’s Disease. I visit the forum several times a week and am always amazed at the quality of the content. Participation is voluntary, but there are always ‘regulars’ and usually one or two new members willing to impart or gain some knowledge.



Yes, ‘members’. However, you don’t need to sign up if you are just searching or reading the forum. If you want to participate (ask, answer, etc.), you will need to sign up.


Give the KDA Forum a try and let me know what you think about it.

Garbage In = Garbage out

From the comments and emails I received, Terry Waite’s story of anxiety and depression moved a lot of people. It reminded each of us how fragile we are ... no matter what our façade. I have written countless times about ‘being the man’ and ‘manning up’, but we still have emotions and we all handle situations differently.

Over the last few months several spouses and significant others have contacted me. They were frustrated or hurt that the recently diagnosed men in their lives wouldn’t talk about how they are feeling. Each could see that their man was not handling it well. They all wanted to help, but felt shut out and unable to ‘be there’ for the person they love. It must be a terrible feeling watching a loved one go through something a traumatic as this and yet be unable to help.

Having someone to share your feelings with is an important part of the healing and acceptance process. I use the term ‘healing’ because the news often scars us mentally and emotionally. Before we can accept our situation, we must first heal our emotional wounds. The healing process is not easy and is often a painful experience. It is even more difficult when there is no one to share your thoughts and concerns with.

So, why do we push away the person we love the most? Do we really believe we can protect them by not talking? Or, do we believe that opening up will somehow change their impression of who we are?

Whatever the reason, it is wrong. At a time like this, our loved ones need more than ever to be let into our private world. They cannot help if we don’t allow them to know what is happening and what we are thinking. And, we need to come to terms with the fact that going down this path alone will cause more harm than good.


What happens if you do not have a spouse or significant other? Then seek out a good friend or family member that you trust. You’ll know who that is.
Further, if the situation remains problematic even after sharing then seek help from a professional. That doesn’t always mean a psychologist. It could mean your doctor, pastor, rabbi, or cleric.

The idea is to change your perspective because when something  like this happens we tend to see the worst. It becomes difficult to focus on anything positive because we are feeding ourselves a bunch of ‘worst case’ scenarios. I will use an old programmers saying, “Garbage in = garbage out.” Our thoughts often become our worst enemy. And, that is why we must have someone to share your thoughts with.

The right person can help us work through our erroneous thoughts and be there for us as we move forward with out lives.
 

Enough said!

Everyone needs it at some time in their lives

Mental and Emotional Support … Yup, unless you are made of stone, there comes a time when you need it.

I feel fortunate to be a part of the KDA.  The mental and emotional support I have been given over the last ten years has been fantastic.  The KDA Chat Room and Forum are two vehicles that have helped me developed friends around the world.  We all have one thing in common:  Kennedy’s Disease.

Support groups are difficult to set up initially.  If it had not been for the tireless efforts of Susanne and Terry Waite, the KDA would have fallen apart within the first few years.  It takes a special kind of person to withstand the emotional highs and lows of setting up and maintaining a support group.  The reward?  Today, the KDA touches the lives of thousands of people.

I have heard from several people in the United Kingdom and Australia this month that are looking for support a support group in their area.   

Support Networks

I have written about support networks in the past.  I feel they are easier to set up and in many cases more beneficial.  A network does not take away from the need for a support group, but it is the foundation of a healthy life when living with Kennedy’s Disease. 

Back in September of 2009, I commented:

“The person with the defective gene is not the only one that has to learn to accept this health condition. The rest of the family is also intimately involved in this same learning process. Everyone in the family at some points needs to be able to say, "It's okay, I can live with this." Children will quickly sense your stress, fears and discomfort. They need to be able to discuss this health issue openly with you and understand how it might affect their lives. 

By openly sharing this information, it helps release some of the fears and questions that the rest of the family might be harboring, but is afraid to voice.”



And then in October of 2009, I discussed how to set up your own support network.  The key is to:
“… surround yourself with positive people.

Having close friends and family that you can talk with and count on can make all the difference in how you approach and live with Kennedy's Disease. Building these relationships takes time and effort. The rewards, however, make it all worthwhile. 

A support network is different from a support group in two key areas.

1. A support network is made up of family members and friends; people who know and care about you at a personal level.
2. Support networks are very informal (casual) rather than a structured program scheduled on a particular day and time. You can call a family member or friend anytime just to chat, to schedule a lunch with them, or to meet somewhere. The talks are informal allowing both parties to share their thoughts and concerns. You are there for each other.”

In that same article I discussed several tips to developing and maintaining mutually rewarding relationships (i.e., a support network):

“Developing a strong support network just does not happen. It requires a little bit of work on your part. Relationships are a two-way street. You have to be a good friend to have good friends.

Here are several pointers from the May Clinic article on how to develop strong relationships.

1. Stay in touch: Answer phone calls, return emails, respond to invitations are a few ways to let people know you care.
2. Be proactive: Do not wait for someone else to make the first move. If you meet someone that you believe could be a friend, invite him or her for coffee or lunch. Strike up conversations with strangers and see how things go.
3. Know when to say "no" and when to say "yes": Do not decline an invitation because you feel insecure or shy. Only spend time with people that you find supportive.
4. Do not compete: Be happy instead of jealous when someone succeeds or does something that you would have liked to do, but did not or could not.
5. Be a good listener: Find out what is important to your friends and family. You might discover you have more in common than you think.
6. Challenge yourself: Keep looking for ways to improve your social and communications skills. Maybe it is by complaining less, being more generous and forgiving other's faults.
7. Do not overdo it: Especially in the beginning, be careful not to overwhelm your family and friends with phone calls, emails and invitations. Give them some space. Save those high-demand times for when you really need them.
8. Appreciate your family and friends: Take the time to say thank you and express how important they are in your life.”

So, while I work with some of these people in the U.K. to help them establish a support group, please work on your own support network.  The benefits far outweigh the effort.