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.”

It’s Never Too Early or Too Late

If you are a regular reader, you know that I encourage staying active, mentally, socially and physically. Just because we have a life-changing condition, doesn't mean we have to sacrifice our life.

It is far too easy to allow the problems of the world, and with your health, to drag you down. I read an interesting article by Dr. Heather Snyder in The Costco Connection this weekend. She referenced “10 Ways to Love your Brain” from the Alzheimer’s website.

"Growing evidence indicates that people can reduce their risk of cognitive decline by adopting key lifestyle habits. When possible, combine these habits to achieve maximum benefit for the brain and body. Start now. It’s never too late or too early to incorporate healthy habits."

1. Break a sweat. Engaging in regular physical activity. It elevates the heart rate and increases blood flow in the brain and body. We might not be able to do what we used to do, but we can still get a workout. I believe the key word here is ‘regular’.     
2. Hit the books. Study in any stage of life will help reduce the risk of cognitive decline and dementia. Take a class; learn a foreign language, or a new instrument; or join a book club. Challenge your brain by trying something new/different.
3. Butt out. Evidence shows that smoking increases risk of cognitive decline. Quitting smoking can reduce that risk to levels comparable to those who have not smoked.
4. Follow your heart. Evidence shows that risk factors for cardiovascular disease and stroke — obesity, high blood pressure and diabetes — negatively impact your cognitive health. Take care of your heart and your brain just might follow.
5. Heads up! Brain injury can raise your risk of cognitive decline and dementia. Wear a seat belt, use a helmet when playing contact sports or riding a bike, and take steps to prevent falls. I’ll repeat this last one … take steps to prevent falls.
6. Fuel up right. Eat a healthy and balanced diet that is lower in fat and higher in vegetables and fruit to help reduce the risk of cognitive decline. Although research on diet and cognitive function is limited, certain diets, including Mediterranean and Mediterranean-DASH (Dietary Approaches to Stop Hypertension), may contribute to risk reduction.
7. Catch some Zzz's. Not getting enough sleep due to conditions like insomnia or sleep apnea may result in problems with memory and thinking.
8. Buddy up. Staying socially engaged may support brain health. Pursue social activities that are meaningful to you. Find ways to be part of your local community — or, just share activities with friends and family.
9. Stump yourself. Challenge and activate your mind. Build a piece of furniture. Complete a jigsaw puzzle. Do something artistic. Play games, such as bridge, that make you think strategically. Challenging your mind may have short and long-term benefits for your brain.
10. Take care of your mental health. Some studies link a history of depression with increased risk of cognitive decline, so seek medical treatment if you have symptoms of depression, anxiety or other mental health concerns. Also, try to manage stress.

As a kid, I loved slides

… but they sure aren’t any fun these days. Thr rapid progression (loss of strength) is rather scary.

Early last week my legs started giving indications of a slide. For the next four days strength and capabilities diminished. By Saturday I was not a ‘happy camper’. I should know better because I have been through more than a few of these battles over the last 40 years, but I still think the worst for a day or two.

Saturday afternoon I had enough of the wallowing in frustration and took an accounting of what might have got me here. Even though I exercise several times every day, over the last few weeks I often spent four-to-six hours just sitting. I realized this was not my normal routine.

So, sitting on the throne that afternoon, I decided to change my modus operandi. Every two-to-three hours I was going to stand up and perform a couple of short exercises. Three times that day seemed to make a difference the next morning. Six times yesterday felt even better. I could tell I was on my way back.

I’m not 100% back, but today I feel 90+% back to normal.  

I believe Henry Ford said, “If you always do what you’ve always done, you’ll always get what you’ve always got.” This also holds true in my personal life. If I don’t like the results, I need to do something different.    

Photo: Giant Bomb

Yes, there is no cure, but …

After, “Is there a treatment or cure?” one of the most frequently asked questions that the Kennedy’s Disease Association receives is, “What can my husband (or friend, or father) do to help ease his 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 keep you active.
• 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 impacts 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. There is also a six-part series on easy exercises that can improve your ‘quality of life’ as the disease progresses.

The second best advice I can give is:

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 be changed over time.

 

• Discuss and prioritize the above opportunities with your family and friends.
• Select the highest prioritized opportunity. 
• Transform the opportunity into an activity that you feel you would enjoy doing.
• 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.
• Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun.
• Implement your plan.
• Track your results and review weekly how you are doing.
• If necessary, adjust your plan.

After thirty days, start the process again with the next highest prioritized activity. Thirty days later, add another one in. Within no time, you will be active, engaged, have more energy and feeling better.

The best advice I can give is:

“Stay safe." 

• Pace yourself
• Don’t overdo
• Try to make it fun.” 

My daily routine ...

After my 10 month update on Dutasteride article, I was asked the following: “It would be great to know what your daily activity capacity is. Although your exercise routine is 120 minutes it is hard to know what that means. Can you speak in terms of your daily function? Things like can opening, walking distance, stairs, driving, use of motorized chair or assist devices.”

I like to consider myself fairly active considering everything. I turn 65 in a month and like to stay engaged in all kinds of activities. What follows is a general description of most days.
 

Exercise:

Mondays, Wednesdays and Fridays I have my long exercise program (90-120 minutes). On the other days I have a short exercise routine (15-20 minutes). I find that exercising each morning helps keep my strength levels more consistent and I do not experience joint or muscle pain as often. Both routines are broken down into lower body, upper body, stretching and face/tongue/throat/breathing exercises.

Throughout each day I will perform some quick exercises (1-2 minutes apiece) ... especially swallowing, tongue, breathing and facial exercises as well as some stretches.
 

Other Daily Activities:

Transferring - I use a wheelchair for mobility because of some serious falls in the past (i.e., broken bones). I transfer from the chair dozens of times a day (to and from the easy chair, office chair, golf cart, bed, toilet, etc.). I also stand for a few minutes whenever I can especially in the kitchen.

Walking – I can still walk short distances, but always try to have a wall or railing to hold onto. A walker is helpful when something isn’t readily available.  (Note: I error on the side of caution)

Stairs – I can no longer ‘safely’ climb stairs.

Opening Cans - I try to open everything (cans and bottles) with my hands and if that doesn’t work I use a kitchen-aid device that provides better leverage. I try to use my arms and hands as much as possible for lifting, grasping, holding, etc.

Walking the Dog – I don’t actually walk. I ride a golf cart and my dog walks. We normally get out for four half-hour walks a day (around the lake). This one activity allows me to interact with neighbors and the wildlife (of which there is plenty). I take time each day to observe nature and find it very rewarding.

Driving – I drive everywhere and enjoy the library, dinner with friends, shopping, etc.

Staying Active and Engaged - I am an ‘active’ member of the Chattanooga Writers Guild (two meetings a month). Family activities, including get-togethers, are important to me. I enjoy writing and am in the process of rewriting a 95,000 word novel as well as continuing to write short stories. I support other writers by reading, commenting and editing their stories. I love to read and normally have one-to-two books going at a time. I use the internet and phone to ‘actively’ stay in touch with family and friends.  I also enjoy working Sudoku puzzles.

The KDA – The Kennedy’s Disease Association keeps me involved and active. Between answering emails, writing letters, keeping the website updated, my involvement on the board and many other KDA related activities, my days are usually full and fulfilling.

This Blog - “Living with Kennedy’s Disease” is something else that takes several hours a week.

Meditation – I try to meditate most days.

Chris, I have probably forgot a few things, but I believe you get the idea.  I would like to be a little more involved in some other activities … like hiking and sailing, but …

Should anyone have any further questions, please let me know.
 

My tip for the day ...

“Stay engaged with the world around you” ... do not let living with Kennedy’s Disease slow you down any more than it has to.