What works for you?

Yesterday’s KDA chat room chat was interesting.  Our topic was “What works for you?”  I asked, “What have you found that helps improve your quality of life?”



Some of the items (some big and some small) that have been instrumental in improving the quality of my life are:

• Jar/bottle opener – Without this little instrument I would be asking my wife for help all the time.
• Bed pedestals – This elevates the bed to a good height for easier exiting.
• Adjustable height shower stool – I love my showers and they would not be safe without this stool.
• Removable grab bars for the shower – Safety is ‘job #1’ at our house.  And, if you are traveling somewhere, take them with you.
• Wheelchair’s elevated seat – This helped make life a lot easier. It is easier to stand up and also allows me to be closer to eye-level height when visiting.
• VMI equipped van – I am now safer and freer to travel alone.
• Tallette – I never go anywhere without this because commode heights are way to low.
• Recliner with elevated seat – Without this I would have to spend a lot more time in my wheelchair.
• Rechargeable screwdriver and socket set – Lightweight, but very handy.  It allows me to still do a lot of repairs and maintenance.
• Golf cart – This allows me to visit neighbors, get outdoors and commune with nature, and take my dog for walks several times a day.

Now it is my turn to ask for you to take a few moments  to let me know, “What have you discovered that makes your quality of life safer and better?”  In other words, “What works for you?”

I was afraid to ask for help?

This topic brings back many memories of my working days.  Yes, I was one of those that was afraid to ask for help or let anyone know that perhaps I could not do what was asked.  And, because I was afraid to admit that I was physically challenged. others did not feel comfortable asking if I needed help.

Dr. John M. Grohol, PSYD, comments:  “I think the number one reason why people don’t ask for help is simply fear. Fear that others will judge them for seeking help, fear that others will see them as weak or damaged. This fear is the same kind of fear that holds many people back in their lives.

But fear, like any emotion, can be overcome. It takes effort and work, but if you conquer this fear, you can seek out help and improve your life or situation.”
 


Back then, I was not giving in to this disease.  For the life of me I did not want anyone to know that I was incapable or uncomfortable with doing something.  And, boy, did I pay the price.  Falls, injuries, broken bones, torn suits and dress pants, and sitting on the sidelines while others had fun were just some of the results of not being able to swallow my pride.

Author Audrey Kinsella discusses her situation in a story she wrote.  “While being independent is good, resisting asking for or accepting help isn’t always productive.   Life really can be made more comfortable by accepting help from others.”
 
Inspired by her personal battle with rapidly progressive multiple sclerosis, Kinsella admits that as an independent individual who was once the person offering help, accepting assistance was quite a difficult and humbling experience.  “I gritted my teeth,” she says. “For years, I never asked for help.”
 
“Learning to give and take is a two-way street,” says Kinsella. “But learning to navigate that street can really add to the quality of life. Learn it and move on.”
 
Can I relate to her last comment.  I have written about it before in several articles, but it still amazes me how much personal grief I put myself through during those years.  I remember my wife asking me dozens of time “WHY DID I JUST NOT ASK FOR HELP?” 



There is an article in eHow titled “How to Ask for Help.” 

1. Know to ask for help before frustration and anger take over. This is the first and most important step. 
2. Leave behind feelings of shame and embarrassment. Just because you're asking for help doesn't mean you're a failure. It's actually wise and a very successful strategy because it will save stress and time.
3. Talk to someone who you're close to--like a friend or family member--if you're feeling a bit intimidated asking for help. Maybe they can point you in the right direction.
   
4. State clearly what it is that would be helpful and be specific. People generally want to help they just need to know exactly what is expected of them.
   
5. Say thank you. Always be grateful and appreciative when someone has done something to help.

Rules #1 and 2 above should have been sitting on my desk back then.  And, yes, it is easier to ask a friend or relative for help than to ask someone at work.  Explaining clearly what specifically you need help with also makes the process much easier.  “I can do this, but I just can’t seem to do that …” lets the other person know you just need a little help in certain areas.  And, most importantly, always say THANK YOU. 

Inner-strength comes from self-confidence and self -awareness.  It is knowing your limitations.  It is also recognizing the strengths and capabilities of others.  As the poster says above, “The strong ones ask for help.” 

Dutasteride: A Town Hall Meeting

Yesterday’s KDA Chat Room topic was a “Town Hall Meeting on Dutasteride.”  We had a good discussion on the subject and it helped me to make a decision.

Several individuals on the chat, as well as three others not on the chat that I had talked with earlier, had taken dutasteride during the trial and some continue to take it today.  I found it interesting that one man stopped taking it after the trial and for the next six months experienced several falls.  He went back on dutasteride and feels better again.  Another went off the drug after the trial because he did not see an significant benefit.  Still another that takes it feels like he has more energy. 

A younger man not on the chat commented to me that he stopped taking it and started having more muscle twitches (fasciculations) since stopping and plans to go back on it.  Another retired man says it has helped his strength and continues to take it. No one mentioned any negative side effects.  

Dr. Fischbeck mentioned in an earlier email on the subject:  “The dutasteride trial did not show a significant effect on the progression of muscle weakness.”  And, in an earlier NIH report the following was mentioned.  “Those patients on a placebo lost, on average, 2% of their strength per year (two-year study).  Patients on Dutasteride showed a slight increase in strength, but statistically the difference was not significant.  Dr. Fischbeck surmised that the trial needed to be longer (at least three years) to better determine any benefits.  A few patients on Dutasteride did show significant improvement, while others did not.  Dr. Fischbeck felt that this could mean that the drug reacts differently in certain patients.”

The key words above to me are: 

• “Did not show a significant effect” – That does not mean none.  In fact there was some minor benefits shown in many cases.
• “Reacts differently in certain patients” – This appears to be another 50/50 chance it might help me.
• “Placebo (group) lost an average of 2% of their strength per year” – That is what I am living with today.
• “Dutasteride (patients) showed a slight increase in strength” – A slight improvement is better than a 2% decline.  Wouldn’t that be nice for once.

Even though I had been leaning towards this decision, yesterday’s chat really helped me decide.  I will be calling my doctor this week and asking him to prescribe Dutasteride for me (0.5 mg).  I figure I have very little to lose and a lot to gain.  Wish me luck!

Protecting yourself around the house

You have heard of “child-proofing” your home.  Well, as Kennedy’s Disease progresses, you need to consider how to make your home safer to live in while you are still mobile.  Since most falls occur when we are stepping up or down, turning, twisting, reaching or bending, it is important to perform a “walk-through” of the house looking at every room to determine potential safety concerns/hazards.

Below is a list of things to consider.  Many modifications can be made for little or no cost. 

• Add handrails:  Add a second handrail to any steps.  The leverage can make all the difference in the world for safety and navigation.

• Add entranceway grab bars:  Add grab bars on both sides of the door going into the house from the garage if you have more than one step to navigate.  Many falls occur as you are entering or exiting the house.
  
• Remove throw rugs:  Tape down or remove them.
  
• Replace other rugs:  Replace rugs, if needed, with the non-skid type especially in front of any stairs.
  
• Secure electrical cords:  Tape down or remove/reroute electrical cords that might be a tripping hazard.
  
• Add rug strips to stairs:  If your stairs are not carpeted, consider adding non-skid rug strips on each step.
  
• Add grab bars to bathrooms:  Add grab bars near the shower, tub, and toilet to help you sit down, get up and safely stand. 

• Add shower/tub grab bars:  Add grab bars to the interior of your shower or around the tub.  Removable suction grab bars often work quite well and can be taken on trips.
  
• Make shower/tub surfaces safer:  Make certain you have skid-free surfaces on the floor or a high quality bath mat.
  
• Add a shower/tub stool:  Slip-free shower and bath stools with adjustable height legs make for easier and safer bathing.
  
• Change out the shower/tub hardware:  Add a hand-held nozzle for easier rinsing from the seated position.
  
• Raise the height of the chairs:  Add raisers to the legs of the chairs and sofa you use.  They can be as simple as 2x4 or 4x4s inserted under the legs.  When this no longer works, consider using an uplift-seat or go all the way and buy a chair than can lift you to an upright position before exiting.
  
• Use dining room chairs with arms:  Or, use sturdy pillows/cushion or an up-lift seat.
  
• Raise the bed height:  Add raisers to the legs of your bed to make it easier and safer to get up.  Most bedding stores have these raisers for sale.
  
• Raise the height of the commode:  Install a handicap commode.  It can raise the height of the seat by 2-4 inches.  If that will not help, use an elevated seat (“tallette” device) to increase the height of the seat 4-6” and it is portable.  If that does not work, consider a seat-lift device.  If possible, add arms to the device to get better push off.
  
• Add stools:  In the garage, nook, or hobby room add stools to make it easier to work and get up afterwards.  Stools with a swivel seat are especially nice in work areas.
  
• Improve lighting:  Some hallways or rooms are darker than others.  Add lights or increased wattage bulbs in these rooms.
  
• Get rid of clutter:  Over time certain rooms collect things (clutter) that could become a tripping hazard.  Make a point of picking up or moving aside potential hazards such as newspapers on the floor, a foot stool in a traffic area, a small table in a hallway, etc.

• Rearrange your stuff:  In the garage, nook, kitchen, and bathroom rearrange the shelves, cupboards and tables to make it easier to reach items you use regularly.
  
• Invest in a reacher-grabber:  Many falls occur when we lose our balance while trying to pick something up from the floor.  These reachers are great for picking up many things.

And, most importantly, do not be afraid to ask for help.  There are resources available.  County services and some independent companies will perform assessments and can also provide recommendations and information on needed modifications.  Also consider contacting your regional MDA office for assistance.  Most MDA offices have a “loaner locker” of home aides that could help you determine what would work best before performing modifications or purchasing something.

Three keys:  (1)  In your walk-through, look for “potential” hazards or conditions that might cause a trip, a fall, or an unsafe situation.  (2)  Consider “worst case” scenarios and then consider intermediate and long-term options.  (3)  If you are not already exercising, begin a program that will help maintain your mobility.

The above list is a lot to consider, but it is not everything.  I would appreciate your thoughts to additions to this list.