Resources

Helpful sources of information, products and activities

Feb 132014
 

The paperback version of Rolling Back: Through a Life Disabled

The paperback version of Rolling Back: Through a Life Disabled

Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

Paperback:

Kindle:

Feb 042014
 

This is the cover for my new book. The art is a slightly modified version of one of my late wife's paintings.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

Sep 152012
 
My swollen legs.

My swollen legs.

My lower leg after one week.

My lower leg after one week of compression with CircAid.

As you can see from these before and after photographs, I am finally gaining control of the chronic lymphedema in my legs. Especially note the improved skin color. I don’t often blatantly promote a product but I am so excited about the progress I am seeing from the CircAid graduate leg garments that I can’t resist telling you about it. The video below is my way of expressing thanks to the CircAid people.

Leg after three weeks.

After three weeks. my legs are nearly back to normal.

Apr 282011
 

The Outlook Spring 2011, Page 6

The Outlook, a quarterly publication edited by Theresa Curry for The Myositis Association (TMA) devotes nearly two pages of its Spring 2011 issue to tell its readers about the Life! disabled blog. TMA is a nonprofit organization located in Alexandria, Virginia and dedicated to raising and distributing research dollars in search of cures for the various myositis diseases. In addition to being mailed to patients, caregivers, physicians, researchers and opinion leaders, the Outlook is also available online to members of The Myositis Association. One way to support the important research they do is to join TMA. The dues are very reasonable and the work they do is extremely valuable, especially to those of us who suffer from such rare, difficult and disabling illnesses. Please visit their website: http://myositis.org

Nov 172010
 

When you are disabled, clothing can occupy a big place in your daily life. I typically spend one to two hours per day getting dressed and undressed, so what I put on is very important to me.

Specially tailored jean shorts for wheelchair use.

I wear these shorts that are specially tailored for wheelchair users who don't stand.

Today I would like to talk about pants. The slacks you buy off the rack at a department store are not designed to be worn in a wheelchair all day. (How many Macy’s ads show the male models seated?) Ordinary pants won’t come up high enough in the back and come up too high in the front when you are seated all day. That’s why I purchase my pants from a company in Albuquerque, New Mexico called USA Jeans. They recognize the need for special pants for wheelchair users and have an amazing selection of fabrics, colors, and sizes. Their slacks and shorts are also designed to avoid seams in places that could lead to pressure sores. They are not inexpensive – a pair of jeans with shipping is $90 to $100. But the benefits and comfort and appearance are worth it. (I have not been paid for this endorsement nor was it solicited. I believe in letting people know when a company is doing something to help those of us who have special needs.)

As good as their product is, it still has one important flaw for me: it doesn’t put itself on. That is why I spend two hours a day in the dressing process and why I recently bought a sewing machine. I am trying to design something that will fit my unique requirements and maybe give me a little more free time each day. I will be talking more about the garments I am designing and sewing in a future article.

P.S. I am also in contact with a San Diego area startup company that will be designing, manufacturing, and marketing clothing to the disabled community. I will keep you posted on their progress.

Nov 082010
 

Ability Center Logo

My personal lifeline for wheelchairs, vans, and repairs.

Last night I had to write a very difficult e-mail message to the manager of the San Diego office of Ability Center in San Diego. My wife’s wheelchair had suddenly stopped working at the worst possible time as we were beginning a six week session of daily radiation treatments for her breast cancer. I explained to the manager that my daughter would be dropping off the wheelchair in front of their facility at eight in the morning and asked if there was any way they could fit in a quick repair. I was very lucky that they had a technician available and were able to do a temporary fix that put the wheelchair back in business the same day.

I have been dealing with this company since 1998, shortly after I was first diagnosed with inclusion body myositis. They sold me my first scooter, and my first van with a lift in the back for picking up the scooter and taking it with me. Since then, I have purchased two wheelchairs for me and a scooter for my wife and two more vans with ramps. Not to mention numerous other mobility aids such as walkers, crutches, sliding boards, and cupholders.

Here is the point I am trying to make: if you have an illness that is compromising your mobility, you really need to develop a relationship with a local company that sells the kinds of equipment that you will be needing. Yes, you can probably buy the same piece of equipment for less through a discount Internet retailer, but where will they be when you have a crisis? And believe me, you will have a crisis. What’s more, a professional mobility specialist will be able to help you get reimbursement through your insurance company or (in the case of my wife and me) an organization such as Muscular Dystrophy Association. They will (or should) also have experts who can make sure your wheelchair or scooter meets your lifestyle needs.

I have not been paid for this endorsement nor was it requested. I simply believe that good people and good companies should be recognized.