Thursday, September 30, 2010

Your “Emergency File”

In the September/October 2010 “AAA Going Places” magazine there was an excellent article by Sandy Klim called, “What happens if the unexpected occurs?”  I recommend that you take the time to read this article because it could make a difference when something does happen.  As the article mentions,“compiling (and copying) all of this information can seem daunting, but imagine the alternative.  Your family would have to piece together all this information (within days) without your in-depth knowledge.  The best bet is to gather this information (and update it annually), store it in a safe place, and continue to enjoy life.  It could be years or even decades before someone needs to access your emergency file, but in the event something does happen, you’ll have made the transition easier for the ones you love.”

As I read the article, I reviewed where my information was and found that everything was were I thought it was, but could someone else easily gain access to all the information when it was needed and I was not there.  I needed to become better organized and then let my wife and our executor know where the original documents are, contact information, etc. 

Will - last will and testament
The basic documents that you should have in your “Emergency File” are:
  • Up to date health insurance policies
  • Advance directives can include:
    • A living will
    • Do not resuscitate (DNR) order
    • Durable power of attorney for health care
  • A current and valid copy of your wills
  • A copy of your organ donor card (if you intend to donate an organ)
  • Copies of the following documents:
    • Birth certificates
    • Marriage license
    • Divorce decrees
    • Social Security cards
    • Mortgages and deeds
    • Registration and titles for vehicles owned
  • Family and friends contact list
  • Clear wishes in regards to cremation, burial, religious ceremonies, and other memorial arrangements (headstones, markers, donations in lieu of flowers, etc.)
  • Copies of life insurance policies
  • Copies of 401(k) and IRA account information
  • A listing of financial and investment account information (other than those shown above)
    • Checking
    • Savings
    • CDs
    • Outstanding loans
  • Religious or spiritual affiliation and contact information (if desired).
safety deposit box The article mentions that this file can be stored in a fireproof safe at home, with your attorney, in a safe deposit box, or with a loved one (not living in your home).   I do have a concern of storing some of the information in a safe deposit box or with your attorney because emergencies do not always occur during banking hours.  If you have copies of the information with the original documents stored at one of these two locations, it would help.  The key is letting those close to you know where the files are at and who has permission to access the files.

Of course, those of us living with Kennedy's Disease might also want to include information on Kennedy's Disease, anesthesia information, tissue donation forms (should that be your wish) and a contact list for doctors.

Has the article forgotten anything else that needs to be included in this emergency file?

Tuesday, September 28, 2010

Is there a cost you could put on finding a cure?

I receive several comments a week on my articles as well as many email questions.  This morning I responded to an inquiry ... “I wasn't going to ask this as I can instantly give a bucket load of reasons why it can't be answered. But, I'm interested to know if you've ever wondered yourself. I think the question stems back to a piece you wrote on there being no money in curing rare diseases but it's something I've pondered since.  How much would it cost to find a cure?

Before responding, I had to consider everything that I know and heard about Kennedy’s Disease research.  I do not believe anyone could ever put a realistic cost on financing research to find a treatment or cure.  The issue, in my opinion, is that not enough funding is made available for Kennedy’s Disease research because it is a rare disorder that does not garner much public attention.  Major pharmaceutical companies do not consider this type research a potential "cash cow" so they sit back and wait for some university to discover the treatment or cure and then perhaps buy the patent.  When the potential market (patient base) for a treatment or cure is roughly 1-in-40,000 across the world, it must be difficult for any corporation to justify the research expense unless there is some major return on investment afterwards.

If you read my blog last week, you saw the Dr. Taylor (and several others) published a paper on some research that looks very promising.  Paul will be our guest on the October 16th KDA chat room and will amplify and answer questions about this research.  In my opinion, smaller companies, for example AndroScience, have been looking for funding to continue their initial research on a potential treatment for Kennedy’s Disease.  ASC-J9 is something that looks promising, but I am sure AndroScience has to focus their attention on the acne cure and only dabble in other potential benefits of this compound.

In earlier articles I mentioned the time it takes to move a potential treatment or cure from the test tube, through fly and mouse models, to other testing, and eventually to human trials ... IF the drug continues to show promise and is safe.  I also understand that for those of us living with this mutation that remaining patient is very difficult as you see yourself, or a loved one, slowly decline in capabilities and health. 

Since the KDA is an all-volunteer organization and our donation base is rather small compared to the major non-profits (e.g., MDA, Heart Association, Diabetes Foundation, United Way, etc.), we try to encourage younger researchers to focus on Kennedy’s Disease research by providing “seed money” in hopes these scientists can continue their research while having time to pursue larger grant opportunities.  If we ever grew enough to be able to offer larger grants, we would probably focus our funding on projects like ASC-J9, IGF-1 for muscles, and now this latest research by Paul Taylor.  Until that end, we are a small fish in a very large pond and “hope” is mostly what we have to offer.

Sunday, September 26, 2010

Improving Access to Clinical Trials Act

The KDA received the following announcement this week from the National Organization for Rare Disorders (NORD). The KDA has been a member of NORD for several years and supported this as well as several other similar legislative changes. There were 120 supporting organizations and we were pleased to see that our legislators took notice of the inequities in current regulations and decided to do something about it.

Although this legislation will not impact many with Kennedy's Disease, it is another barrier removed from those of us living with rare diseases who wish to participate in clinical trials that may lead to a treatment or cure.

This is also another example where, without NORD, those with rare disorders would not have a "voice" in our legislature. NORD has been a strong advocate for recognizing and proposing changes to situations where there are inequalities in our current system.

NORD Press Release
Washington DC-----In a victory for rare disease patients and families, the U.S. House of Representatives yesterday passed the Improving Access to Clinical Trials Act (I-ACT).  The bill, which passed the Senate August 5, goes now to the White House where President Obama is expected to sign it.

"This is a victory for the rare disease community," said NORD President and CEO Peter L. Saltonstall.  "This legislation will support the development of new therapies by removing a barrier that might keep patients from participating in important research studies."

The legislation changes the eligibility requirements for Social Security Supplemental Income (SSI) and Medicaid so that compensation of up to $2,000 for participating in clinical trials won't be considered income in SSI and Medicaid determinations.

NORD has worked with the Cystic Fibrosis Foundation and other patient advocacy groups in support of this legislation.  NORD and several of its Member Organizations signed a recent letter on behalf of the Improving Access Act sent to House Speaker Nancy Pelosi (D-CA) and House Minority Leader John Boehner (R-OH).

"We're grateful to our Member Organizations for their support on this important issue," Saltonstall said.  "This is one more reminder that—when we speak together—we are able to bring about change that improves the lives of patients and families affected by rare diseases."

Thursday, September 23, 2010

New Research Reported on Kennedy’s Disease

Dr. J. Paul Taylor of St. Jude Children’s Research Hospital and seven other researchers published a new research report this week.  Dr. Taylor is also a member of the Kennedy’s Disease Association Scientific Review Board as well as a longtime supporter of the KDA.  Note:  I am including the full links today in case your browser does not allow for redirection links. 
The press release can be found on EurekAlert (  The entire article can be read and downloaded from Neuron (  

I am awaiting on a response from our biology professor of what the research means for those of us living with Kennedy’s Disease, but the press release does a nice job of explaining the seventeen-page report.  I have included some excerpts from the press release below.

"The idea that toxicity is mediated by the native, or normal, function of the protein itself is a departure from conventional wisdom. This research adds to growing evidence the principle applies very broadly in other neurodegenerative disorders, including Alzheimer's and Parkinson's diseases," said J. Paul Taylor, M.D., Ph.D., an associate member in the St. Jude Department of Developmental Neurobiology and the paper's senior author.

Taylor said: "Our findings suggest the focus on protein aggregation inside cells may be misplaced." Developing therapies that target the normal protein function will likely be easier and more effective, he added.  Medications are already available to block the androgen receptor (AR) protein, which is mutated in SBMA. Work is now underway in Taylor's laboratory to identify drugs that more selectively block AR functioning.

After earlier work by other investigators showed that blocking testosterone prevented male mice with the SBMA mutation from developing the disease, Taylor and his colleagues set out to track what happened inside cells after the hormone bound to the mutated AR protein.

Working in a Drosophila fruit fly model of the disease, the scientists identified a small region of the AR protein, known as the AF-2 domain, which played a pivotal role.  Using a variety of techniques, researchers demonstrated they could rescue the cells by preventing certain members of a family of proteins called coregulators from binding to the AF-2 domain. Coregulators partner with AR and other transcription factors to regulate gene expression. 

"In this study, we showed the ability of the mutant protein to interact with the normal binding partners is an essential step in the cascade of degeneration. By blocking it, we block degeneration," Taylor said.

And, drum roll please ...

“The findings also hold hope that treating or preventing SBMA by selectively disrupting AF-2 binding will soon be possible,” Taylor said. "Selectively blocking the hormone will be key if we hope to prevent the side effects associated with androgen ablation in males," he said.  The study also suggests the need to begin treatment earlier. If the damage to motor neurons begins with the hormone surge of puberty rather than the accumulation of mis-folded proteins, therapies must begin in childhood, Taylor said.
As I learn more, I will let you know.

Tuesday, September 21, 2010

Are you planning any air travel in the future?

For most of my working career, I spent a lot of time traveling (mostly sitting in airports).  Since 9/11, however, air travel has taken on a totally new meaning.  If you have to travel today, you had better be prepared for long lines, many delays and more thorough security checks.  If you require a wheelchair for mobility, the process becomes even more difficult.  There are resources available today that can help this process.  Below are just a few that might be of help as you prepare for, as well as, during the trip.

The U.S. Department of Homeland Security now has a card that will make passing through airport security a little easier for people traveling with disabilities.  The card, according to Homeland Security, will help both the person traveling and security personnel.  It does not exempt the person traveling from inspection; it just makes the entire process smoother and more private.  Quest Magazine had an article on this handy card and a copy of the card can be printed (PDF) by clicking on this link.  The article states, “The government agency says the optional cards serve the dual purpose of protecting passenger privacy and facilitating the screening process. Although the card doesn’t allow the user to skip the screening, it states that “alternative procedures which provide an equivalent level of security screening are available and can be done in private.”  

The KDA has put together some travel tips that also might come in handy.  The section on traveling with a wheelchair comes from the personal experiences of a board member.  Included in the article is the role of the Complaint Resolution Officer.  In the event of a problem with airport or in-flight personnel, you should require them to contact the Complaints Resolution Officer (CRO), who must always be available and willing to deal with your grievance. They cannot refuse. However, to avoid problems, make sure that you let the airline know your needs as early as possible.“ 

The Transportation Security Administration has provided some good information on preparing to go through security checks (screening process).  The MDA also has an article “The Keys to Success” for air travel. I hope some of these suggestions will help fellow KD’rs prepare for their trip to the upcoming Kennedy’s Disease Association conference in San Diego this November.

Readers, if you have some additional tips or information on easing the travel process, please add a comment or send me an email.

Sunday, September 19, 2010

Desperate measures

Recently I have seen something that bothers me.  As with many of us living with Kennedy’s Disease, the older we get the more desperate we become.  Many are willing to try almost anything to stall or reverse the progression of this disorder.  In a couple of chat rooms this summer, a few have commented on their frustration with the research process and the slower than expected progress in finding a treatment (e.g., the years it takes to move from test tube, to fruit fly, to mouse models, to human clinical trials).  A couple of recent comments and an email reflect a few others are using experimental drugs or drugs that are/were being tested in a clinical trial without a doctor’s direct supervision.  Recently a man discussed his use of several different vitamins, medications and drugs (all at one time) in an attempt to slow the progression.  This could be especially hazardous because certain medications might not be compatible and could cause other problems.

I understand this frustration and the desire to try almost anything ... just in case it might help.  And, yes, I would love to see something become available that could improve the quality of my life.  On the other hand, many of these treatments are expensive and might do more harm, especially when we do not know a safe dosage.  Furthermore, without adequate supervision and documentation by a qualified doctor, if a treatment is found to be effective it will not be reported so that others might benefit.

The KDA has a slogans, “Working together to find a cure ... if not for this generation, than for our children and grandchildren.”  I have a daughter that is a carrier.  She has two children.  I would do almost anything if they would not have to live their lives under the shadow of this genetic mutation.  I still have hope that there will be a treatment for this disease ... if not in my lifetime, than at least in theirs.

If you are experimenting with potential treatments for Kennedy's Disease, please bring your doctor into the process.  He (or she) is more qualified to review with you possible drug interactions, dosages, and potential side effects.

Thursday, September 16, 2010

Bits and Pieces

Today is one of those days where I have several short topics that need to be discussed.

Reminder - Get your Flu Shots – It is that time of year again. Do not forget to get your flu shot this fall. Supposedly, the H1N1 vaccine is included in this year's shot. Also, check with your doctor on whether it is time to get the pneumonia booster shot.

KDA Fall Newsletter – The fall newsletter is now available. You can download the PDF document by clicking on this link. Or, visit the KDA website and you can find the link in the right hand column under NEWS. Note: The revised issue was published this morning. The original had some formatting problems.

KDA Conference and Education Symposium – The conference is coming up this November. Over a dozen researchers have registered for the conference including Doctors Fischbeck, La Spada, Taylor, Beitel and Merry. There are also several past KDA grant recipients attending. The hotel has rooms blocked for the conference, but the rooms will be released by October 10. The agenda has been finalized.

The KDA Forum is an excellent resource – If you have not visited the KDA Forum recently, I would recommend that you drop by. It has several new topics posted ... including a few on current research. It is also an excellent way to interact with others who are living with Kennedy's Disease.

Tuesday, September 14, 2010

Being Prepared – Preparation is the key - Part II

Sunday's article provided the background on why you should have a plan for discussing with your doctors potential complications from certain types of anesthesia. In today's article, I will provide some actual steps you can take to minimize complications and delays for needed surgeries.

1.        Emergency Medical Card – This card or something similar needs to be carried in your wallet.  It will forewarn emergency response personnel and hospital staff that you have a health issue that needs to be considered when treating the patient.
2.       Medical Information Form - This form, when filled out, provides detailed information about your health condition, medications, doctors, health insurance, emergency contacts, etc.   I recommend carrying a copy in your car, giving a copy to your doctor, and having a copy at home.  Because I traveled quite a bit in my earlier life, I also carried a copy in my carry-on bag.  In the “Medical Concerns” section, add specific wording that you feel is appropriate.  A discussion with your doctor on what he would add to this section is most helpful.  Included in my form are the following:
·         Certain anesthetics could be hazardous to the patient’s health.  Of primary concern is how the anesthetic agents will affect the patient’s muscles (including the heart and lungs) during surgery and recovery.  Certain neuromuscular blocking agents are a major concern.  The use of syccinycholine should be avoided because of possible unpredictable side effects.  Reactions could include malignant hyperthermia (MH).  The best treatment is not to give this patient any MH triggering agents.
·         Patient needs to be kept well hydrated before during and after surgery. 
·         Patient does not tolerate changes in body temperature (especially cold).  Try to keep him warm.
·         Caution should be used since the patient chokes easily and could experience difficulty swallowing.
·         Patient may be predisposed to regurgitation and pulmonary aspiration.
·         Post-surgery pneumonia is a potential complication because the patient cannot easily clear his lungs. 
3.       Communicate your Condition – During your next doctor’s visit, discuss your medical condition and any potential issues that need to be considered by an anesthetist prior to any surgery as well as the hospital staff pre-during-and post operation.  Ask your doctor to document these concerns in your medical record should emergency surgery ever be needed.
4.       Planning for Surgery – If there is time (elective or an upcoming planned surgery); discuss potential issues with your surgeon and surgical team.  Make certain they are well versed in Spinal-Bulbar Muscular Atrophy and the potential side effects including those from certain anesthetics.  Ask if they have performed surgeries before on patients with similar conditions.  If you have concerns, discuss these with your regular doctor and neurologist.   

A key resource in getting your message out is your family doctor and you/your spouse.  Do not be shy and always error on the side of caution.  If you do not feel you are being listened to, call a “time out.”  Yes, you are dealing with professionals, but that does not mean they have experience with neuromuscular disorders (NMD) and in particular your, or similar, disorders. 

Be prepared ... it might save your life.

Readers, if you have some particular recent experiences with surgery, please share them.

Sunday, September 12, 2010

“Be Prepared” ... A motto that might save your life – Part I

This last week I received an email. "I would like to know the position of general anesthesia and KD affected men. If you could cover how KD affects anesthesia, are there any options, at what stage in the KD lifecycle does this become an issue. I have this fear of having to have an emergency operation and because KD is such a rare disease the surgeons etc may not be aware of the risks."

The questions are excellent and it was a concern of mine a few years ago. Because of the importance of this subject, it will be a two-part article. This article is focused on comments from doctors. Part II will be about preparation and concerns in general as well as highlighting some of the comments from this article.

Background: I broke my tibia and fibula in a fall. The emergency room x-rays showed the two bones were broke a several places. The orthopedic surgeon wanted to operate and use some pins and screws to correct the problem. I asked my wife to go home and bring back the anesthesia information from my Kennedy's Disease file. The anesthetist reviewed the information and he recommended that the operation not be performed at this hospital. He had never assisted in a surgery on someone with spinal bulbar muscular atrophy.

There is some good information on the internet about anesthesia and neuromuscular diseases. The KDA has four articles on the subject that explain the concerns and potential issues quite well. The MDA also has information on their website about anesthesia and neuromuscular disease (NMD).

Dr. P.J. Halsall and Professor F.R. Ellis provide the following explanation.

"People with neuromuscular disorders must take great care if they are to have a local or general anesthetic. Even someone with very mild, or
non-existent symptoms, or someone who has a family history of a disorder, needs to let the anesthetist know well in advance so that tests can be carried out and proper care after the operation can be arranged. Many people are afraid of having an anesthetic, mainly through ignorance, but when we look at the rate of complications and even deaths arising from anesthesia we see that it is in fact very safe. This safety is the result of a thorough understanding of the patient's medical condition with a careful assessment before the operation, marked technical improvements in monitoring facilities such as High Dependency Units (HDU) and Intensive Care Units (ICU).

Patients with neuromuscular disorders (NMDs) deserve special attention when it comes to anesthesia because many of the agents used (gases and
chemicals) have effects on both muscle and nervous tissue. The main areas of concern are how the anesthetic agents will affect the muscle and how they will affect the heart which is itself a muscle.

Muscle relaxant drugs should only be used if essential because they tend to have a more profound and prolonged effect in NMD patients compared to
other patients. One type of muscle relaxant, called suxamethonium, should usually be avoided. It causes the release of potassium ions (K+) from the muscle tissue into the blood. In normal patients this is usually of little practical significance. In patients with NMD the muscle may normally leak K+ so that a further increase in the levels of K+ in the blood may cause abnormal heart rhythms. A preoperative blood test to check K+ levels is therefore important.

A local anesthetic works by preventing the normal electrical activity in the nerve around which the anesthetic agents are placed. For minor procedures, such as stitches for cuts, they are probably the first choice for patients with NMD because they have few if any side-effects. However for major local anesthetic techniques, e.g. spinal or epidiural, careful assessment of the patient is needed and the type of NMD considered well before the operation.

Changes in body temperature and preoperative 'starvation' are also a concern. Patients with NMD do not tolerate changes in body temperature or the
starvation often associated with anesthesia or surgery as well as normal patients, so steps need to be taken to minimize these problems by keeping the patient warm and well hydrated using drips.

To sum up ... clearly anesthesia in NMD is not to be undertaken lightly. Such patients should expect the anesthetist to make a careful and thorough assessment of their particular condition and their current state of health. They are not suitable to be treated as 'Day Cases' because doctors should
carry out preoperative investigations, and enough time and recovery facilities should be available after the operation. It is absolutely essential that the person affected by NMD should inform the anesthetist even if there are only minor symptoms, or no symptoms at all. Occasionally a neuromuscular disorder in a person who had no symptoms has come to light only because of an unexpected problem with anesthesia, particularly in young children."

Dr. Linton Hopkins, a neurologist at Emory explains other concerns.

"KD patients may have significant weakness of respiratory muscles and not know it, so they don't report it pre-op. Then after surgery, with the ordinary chest or abdominal pain that follows so  many operations, they find it impossible to take an adequate breath or cough well enough to clear secretions. This can quickly lead to hypoventilation & pneumonia. Everyone who is not confident about the strength of their cough and sniff should warn their doctors and ask for pre-op pulmonary function and instructions about incentive spirometry and other ways to minimize the risk. ... Surgeons and anesthesiologists know about myopathies and neuropathies, even though few will have heard of KD, which is such a rare "neuropathy", or anterior horn cell disorder."

Part II will be posted on Tuesday.

Wednesday, September 8, 2010

An opportunity to speak out

I received an email today from the National Organization for Rare Disorders (NORD). Many times over the years I have heard from people that believe they have Kennedy's Disease, but are afraid to have the genetic test. They are concerned that the results of the test would be made available to their insurance company (or others). For this reason, many families have been left hanging ... wondering whether the father has Kennedy's Disease. The major issue is that their insurance company might raise their premiums or they could not change insurance companies because of a preexisting condition.

If this has been, or still is, a concern for yours, please consider contacting Mary Dunkle today at NORD. We need this issue brought forward and I am pleased to see the NY Times take on this subject. I hope that some good will come from this article.


TO: NORD Member Organizations

Re: New York Times article regarding genetic testing and medical records

The New York Times has contacted NORD for assistance in identifying patients to interview for a story on medical privacy and, specifically, what should be done when patients say they don't want results from genetic tests in their medical records. The AMA says that doctors can keep a separate medical record without such data but, if they send it on to insurers, they will need to note that genetic information has been withheld which, of course, is a red flag.

The Times is looking for patients or family members to interview who have faced these issues. If any of your members would be interested in being interviewed, please have them write to with a very brief (one or two paragraphs) description of their experience. The story will be written within the next few days so it would be important to reply soon.

Tuesday, September 7, 2010

A Sensitive Subject

Public Restrooms – "Can't live without them and can't live with them."

Last Saturday's KDA chat room was interesting. We somehow got on the subject of public restrooms and from there everything went downhill.

  • It seems that there are never enough handicap accessible stalls.
  • After someone using a handicap parking stall that does not need it, the next event that raises our stress level is finding someone using a handicap accessible stall that does not need it.
  • Stalls that have a very low commode height and low grab bars are almost worthless for us older men.
  • When the ADA developed criteria for handicap accessible stalls, they did not take into consideration people where their arm and leg strength does not allow them to stand up from the seated position. We need higher commodes and higher grab bars.
  • Urinals that do not allow us to lean against the wall, or a partition, for balance are difficult to use.
  • Some older buildings that converted original restrooms to handicap have entrance door widths that do not allow wheelchair access.
  • Almost everyone at one time or another has had to try more than one facility's restroom to find a more easily accessible stall.
Many of the chat room attendees related stories where they needed assistance in standing up from a commode. A few commented that they had to ask strangers for help. They felt uncomfortable asking, but did not have any other options. I mentioned that I carry a "tall-ette" with me in the car. The formed plastic insert adds four inches to the height of the commode. I do not go anywhere without it.

Most everyone feels that visiting places that do not have adequate restroom facilities is a constant source of concern and limits our activities. The subject is easily broached with your caregiver and family, but not something that you would feel comfortable discussing with friends and acquaintances. I know that it is always a consideration whenever my wife and I consider an upcoming activity or trip. You hate to be a "stick in the mud," but when you have to go, you have to go!

I would be interested if you have any tips or tricks to help minimize this concern.

Sunday, September 5, 2010

Co-Q10 – Is it beneficial?

The Medical College of Wisconsin (in Milwaukee) is currently researching Co-Q10 (Co-enzyme Q10). Allison LaPean, a former member of the NIH team is there. The research is trying to determine the benefits of taking Co-Q10 for neurological patients with ALS, MS, Parkinson's and KD. A newsletter sent to another man with Kennedy's Disease commented that the preliminary results have been "encouraging" thus far. The Parkinson's disease trial was published here. In addition, a 2002 study of 80 Parkinson's disease patients found 1200mg/day reduced the progression by 44%. It is my understanding that no information has been published yet concerning any potential benefits for those of us with Kennedy's Disease.

Dr. Lieberman in our Saturday chat room session commented, "CoQ is likely to have some beneficial effects, though they may be small, since it gets rid of things called free radicals that can damage cell membranes and proteins." Dr. Lieberman also commented, "I don't know if there's really any evidence that free radicals are critical to Kennedy disease, but I don't think there's much of a down side to CoQ, other than cost. BUT, I'm not a neurologist, and you should probably check with your treating physician before starting a program using Co-Q10."

Personally, I have been taking Co-Q10 for several years at the recommendation of my doctor (another it cannot hurt comment). I take 240 mg/day. A third person with Kennedy's Disease mentioned his neurologist recommended Co-Q10 also (300 mg/day). In our cases, it is difficult to say whether it makes a difference because we have been taking it for some time. The study mentioned above should help clarify whether it provides any value.


On a side note, the KDA Discussion Forum continues to amaze me. The forum receives several hundred page-reads a day. The number of published comments and questions, as well as the sharing of information and support, is a blessing for those of us living with this disease. I check the forum about once a week and usually find five or ten new questions and comments on a variety of subjects. Check it out if you have the chance.

Thursday, September 2, 2010

How am I doing?

Occasionally I am asked, "How are you doing?" Today's post is a brief update on how things have been going recently.

I have been feeling pretty darn good recently. My exercise program has been easy and enjoyable. My knee and leg pain has been minor or nonexistent. My strength has been good. My hands are operating close to normal (normal for me anyway). My throat and jaw are fine and seem to be functioning well. I have been sleeping pretty good ... especially for me. What can I say; the program is working and life is good!

I believe my recent change in philosophy concerning purchasing needed products today that will satisfy expected needs for the next 3-5 years is working also. I am still looking for a "roll-in, hook up, and drive away" van, but that is more my fault (priorities) than anything. Fortunately, my old chair continues to run and that stays in our current van.

I have been sidetracked with KDA work including the fall newsletter, summer reading, and some other things. My new chair continues to be a great investment. I cannot speak highly enough about my Permobil C-300. It is definitely a step in the right direction. Now, if it could only climb stairs ...

For those readers out there, I read three interesting books this summer. These books had me reading four-to-six hours a day instead of my two hours a day average. I could not wait to get to the end to see what happened and then felt empty because I finished the book ... still wanting more.

  • The first book is "The Pillars of the Earth" by Ken Follett. I enjoyed Follett's writing style and this book was historical fiction. The setting was in England and France during the 1100s. The thousand page book is centered on the building of a cathedral, but brings in the monarchy, economy, the church, morality, politics, and so much more. Follett developed some great characters and you followed many from birth to death. He has a sequel called "World without End" that I plan to read soon.
  • The second book is "The Passage" by Justin Cronin. This book was another New York Times Best Seller. This 800-page fiction begins in the near future where military experiments (trying to build the perfect soldier) went haywire unleashing a terrible horror on the world. From there the books takes you on a haunting and often horrifying journey in an attempt to correct the mistakes made by the survivor's ancestors. Cronin does a great job of developing characters (both protagonists and antagonists) that are memorable.
  • The third book is "61 Hours" by Lee Child. This is Child's thirteenth book where Jack Reacher is the protagonist. Reacher is stuck in a small town in South Dakota during a blizzard where a Mexican drug cartel has developed a meth lab on an old military base. As you can tell by the title, the book starts counting down from 61 hours and builds momentum all the way to the end. I believe it could be Child's best book.
I am just a little busier than I care to be. I have not been able to change my priorities to focus more of my time for writing. I am usually pretty good at redirecting my priorities, but these books and a few other activities have my focus elsewhere right now. I am not complaining, because the books and other activities are enjoyable, but ...