Have you considered donating tissue for Kennedy’s Disease research?

Since Kennedy’s Disease is a rare disorder, there is still a lot of behind the scenes testing taking place to help determine potential treatments.  One way to help is to donate tissue to the Kennedy’s Disease Association for medical research.

Below is some information taken from the KDA Tissue Donation Guide that can be found on our website. 

IMPORTANT: Preplanning is required to minimize last minute decisions and possible delays. Finding a qualified pathologist ahead of time is especially important. 


1. What research will be done on the collected tissue?

Tissue samples and results of clinical testing are made available to qualified scientists only after their research proposal is reviewed and approved by the KDA Scientific Review Board (SRB) and KDA Board of Directors. These studies may lead to improved understanding and advances in the diagnosis and treatment of Kennedy's Disease and related disorders.
Samples are provided for biochemical and genetic studies. The samples are labeled with numbers rather than names to keep donor information anonymous.

2. What tissue is collected?
 
Brain and spinal cord (with attached dorsal root ganglia) are the minimal tissues that will be collected from patients with Kennedy’s Disease. Other tissues, such as testes and skeletal muscle, could also be useful to researchers and will be collected if permission is received from the next of kin.
 


3. Is patient confidentiality maintained?
 
Yes. Patient confidentiality is strictly maintained. An autopsy number assigned at the time tissue is submitted to the tissue bank is the only identifier of tissues provided to researchers. This assigned number is devoid of all private information.
 
4. Will the funeral arrangements be delayed?
 
No, with the proper preplanning and careful coordination, there should be no delays for typical funeral arrangements. The tissue collection procedure will be performed within the first 24 hours after death.
A family member needs to be able to work with the hospital, nursing home, or funeral home to expedite the transportation from the place of death to the Medical Center or hospital, and after the collection then to the funeral home. 
 
5. Can there still be an open casket?
 
Yes, the removal of tissue does not change the appearance of the body for the funeral service.
 

6. Does donating tissue for research purposes interfere with religious beliefs?
 
No, tissue donation does not conflict with most religious beliefs. If you have any questions concerning this issue, please contact your priest, minister, imam, rabbi, or other religious leader.
 
7. Who can legally grant permission for the tissue to be removed?
 
Prior to death, an individual donor or family member can indicate their intent by signing the provisional consent. This permits your doctor to plan for the tissue collection. However, after death, the person's legal next-of-kin must authorize the tissue removal before it can be performed.
The following persons, in order of priority, may provide such consent:

• 1) Spouse
• 2) An adult son or daughter (*)
• 3) Either parent
• 4) An adult brother or sister (*)
• 5) A guardian of the decedent at the time of death. (*)
• 6) Any other person legally authorized.

(*) Note: The person must be at least 18 years old
If there are several individuals in a category, they must all agree. For example, for priority level 2 above, all adult children have equal authority and must agree. Signing a provisional consent can help others by documenting a patient's wishes.
 

8. Where is the tissue collection done?
 
The next of kin and family doctor determine this.  It is most helpful for the donor and family to make pre-arrangements with a pathologist at a nearby medical center or university hospital to collect the tissue.  Your family doctor should be able to recommend a facility in your area that can perform this service. 
Autopsies at community hospitals are not performed regularly, but academic medical centers are generally more receptive to the procedure.  

9. Are there any costs or fees involved?
 
Yes, the family will be responsible for any costs related to the actual tissue collection process as well as the transportation costs to and from the medical center or university hospital where the tissue is collected. There is no charge for the shipping of the tissue collected, the tissue storage, or for any of the research testing.
 
10. Will the Tissue Bank Coordinator help make the collection arrangements?
 
No, unfortunately the KDA and Tissue Bank Coordinator are not able to help the family locate a medical center and pathologist to perform the tissue collection. The coordinator, however, will work closely with you to facilitate arrangements to transfer the harvested tissue from the hospital or medical center to the tissue bank. 
 
A member of the KDA’s Scientific Review Board could also be made available to help answer any questions that the pathologist may have providing that the KDA has advanced notice of an impending death and autopsy.
 


11. Where is the tissue stored?
 
The tissue will be stored at a qualified tissue or organ storage facility. Currently, that location is at the University of Michigan, Medical Center.
 
12. What needs to be done when I have made a decision to become a donor?

• Preplanning is required. If the decision is made to donate tissue at the time of death, the process becomes impossible to have the collection performed in a timely manner.
• Discuss your decision with your family and agent with Medical Power of Attorney so they will understand and support your decision.
• Sign the tissue donor form included in this brochure.
• Send a copy to your next of kin, your family doctor, the intended executor of the estate, the agent under Medical Power of Attorney, and the KDA at the address shown on the front of this brochure.
• Keep a copy of the document with your other legal documents.
• Sign the Tissue Donor Card included in this brochure and carry it in your wallet.
• Ask your family doctor to recommend a suitable hospital, medical center, and pathologist.  Contact the pathologist to discuss your wishes.

If interested, please follow the link above to the KDA website to download the entire guide.  On the page there is also information on a national pathologist service if that is of interest. 

Should you have specific questions, do not hesitate to contact the KDA at info@kennedysdisease.org. 

10 Day Update on Dutasteride

It has been ten days since I started taking dutasteride.  I am keeping a daily journal to track any side effects, observations, etc.   I felt this would be a good time to provide an update those interested.

The only major side effect that I have seen so far is the horns growing out of my head.  My wife said this has nothing to do with the drug, it is just my personality expressing itself physically.   (I am certain there is a compliment in her response somewhere)



I have noticed a few things, but I am not certain whether they are drug related, psychosomatic or caused by something unrelated.  

• In ‘day 2’ I woke up very sore.  The muscle soreness was pronounced and in the shoulders, wrists, hands, and lower legs.  This soreness was different than my normal aches, however.
  
• The soreness went away, but shows up again after every long workout.  This workout is the same routine I have been doing for over three years without any soreness.
  
• Again, I know it is too early to tell anything and it will probably take months or perhaps a year or more to tell if this is doing any good, but …
• My long exercise program is easier.  I am even adding more reps.
  
• I am doing far more arm raises and arm lifts from knees to above the head.  They are so easy right now I am even considering adding more weight.
  
• I feel like I have more energy.
• Except for the muscle soreness, I have not experienced any other side effects (we’ll forget about the horns for now).

It would be wonderful to report some miracle has happened, but I knew going into this program that was not going to happen.  Patience is what is needed and also the hope that I am one of those men that dutasteride works on.  A few men reported that they had no idea whether dutasteride was working until they stopped taking the drug. 

A new exercise program that is scoring points

I mentioned in several earlier articles that I am having problems with my left index finger and thumb not working very well.  It has been causing all kinds of problems in my daily routines.  Yes, I do several hand, wrist and finger exercises every other day, but they have not kept up with the progression.



Well, a few days ago I discovered a new exercise routine that seems to be helping to maintain what dexterity and strength I still have in those two digits.  The interesting thing about the routine is that you do not need any weights, bands, or electrical devices.

What is this new program?  “Washing dishes.”  Yes, that is right, just washing dishes.  And, another good thing about it is that my wife loves the new routine.



I found that when I wash dishes these days I need to focus on holding, twisting, and turning the dishes and glasses to thoroughly wash, rinse, stack and dry them.  If I do not remain focused, I might drop one.  Focusing on those particular muscles that you normally take for granted causes you to use them better.  It is almost like “locking your knees” when standing to make certain you do not fall.

Today, for several hours after finishing my new exercise routine, I noticed a remarkable improvement in the use of those two digits.  So, if you feel a wrist, hand or certain fingers are weakening, give dishwashing a try.  Besides being beneficial to the motor neurons and muscles, is also scores points with your wife … and that never hurts.

Warning!  Do not mention to your wife how beneficial washing dishes is.  I made that mistake and she said I can now wash all the dishes.  Ugh!

Law of the Garbage Truck

A fellow KDA board member sent me the following story a couple of months ago.  At the time, I was not ready to really read it.  With some recent events, I pulled it out again and this time it hit home.


One day I hopped in a taxi and we took off for the airport. 

We were driving in the right lane when suddenly a black car jumped out of a parking space right in front of us. My taxi driver slammed on his breaks, skidded, and missed the other car by just inches! 

The driver of the other car whipped his head around and started yelling at us. 

My taxi driver just smiled and waved at the guy. And I mean he was really friendly.

So I asked, “Why did you just do that? This guy almost ruined your car and sent us both to the hospital!”
This is when my taxi driver taught me the ‘Law of the Garbage Truck’.

He explained, “Many people are like garbage trucks. They run around full of garbage (frustration, anger, resentment, and disappointment). As their garbage piles up, they need a place to dump it.  Sometimes they will dump it on you.   Don’t take it personally.  Smile, wave, wish them well, and move on.  Most importantly, don’t take their garbage and spread it to other people.”

The bottom line:  Do not let garbage trucks take over your day.

Life is too short to wake up in the morning with regrets. In the end, love the people who treat you right and forget the ones who don’t.



Life is 10% “what you make it” and 90% “how you take it!” 

As I have written before, “The only handicap in life is a bad attitude.”

Acceptance of another kind

There is a story about a town that became flooded with a spring thaw.  A man, whose house was almost entirely under water, was sitting on the roof.  As the river rose, the man would continue to pray for a miracle that would save him.  

One day a rescue boat approached.  A fireman, who was steering the boat, told the man to jump into the water and he would pick him up.  The man turned him down saying, “I know that God will save me.”
The next day a helicopter flew over the house and lowered a ladder.  The man shook his head, pushed the ladder away, and said, “No, I have faith that God will save me.”

Eventually the man and his house were swept away and he drowned.  When he met St. Peter, the man said, “I don’t understand.  All along I had faith that God would save me.  Why did God let me die?”
St. Peter shook his head and replied, “First God sent a boat to save you.  Then God sent a helicopter.  You turned both of them down.  What else could God do?”

I know this man that has given up.  He believes there is no hope.  He will no longer listen to anyone.  He shirks off all advice saying that no one understands his situation.  When someone tries to help, he just turns away and cuts off all communication.  This death spiral has been going on for a couple of years now.  He picks himself up occasionally and tries to change his life.  But, if something does not fit his concept of how things should be, he immediately rejects it and starts spiraling downward again.

Almost everything he has done over the last year or so has been self-destructive.  It is difficult to watch his situation worsen.  It is even frustrating to try to help and constantly have your ideas or offers to help turned down.

At the same time, I have not been able to just walk away.  I know that if he would just allow others into his life, it might be just what he needs to turn the corner.  That has been my hope all along.

I have written about ‘acceptance’ many times.  Accepting a situation does not mean giving up.  Acceptance means that you have a willingness to recognize and understand your current situation so that you can move on … begin to lead a new life by doing things differently.



Like most everything in life, there is a cycle that needs to be navigated in order to move on.  One such cycle is shown below.



As you can tell, I am frustrated.  I just do not know what else I can do.  It is tough to just let go and watch the person drown.  It is just as tough to continue to offer help and have the person lash out in anger.  Perhaps it is time for me to review the ‘cycle’ above

Step 5.  It is true and there is nothing I can do.  

Step 6.  I might as well accept that things are not going to change and a miracle is not going to happen.  I need to get rid of this feeling of  ‘guilt’ (not being able to help) I am experiencing and get on with my life.

Step 7.  Well, it could always be worse.  I just have to live with the knowledge that ‘I offered to help’ many times and was always turned down.  This could be a blessing in disguise because it will finally allow me to move on. 

I hope so anyway!

Preimplantation genetic diagnosis (PGD)

The subject of PGD has come up several times in the last couple of years regarding the potential parent’s concerns with Kennedy’s Disease. At the KDA conference this year, attendees heard of the success of one family using PGD to terminate the defective gene in their lineage.  

Since I know very little about the subject, I went to Wikipedia to learn more.  From there I read more about it at Suite 101 and the Advanced Fertility Center of Chicago. Below are excerpts from these three websites. I can understand why potential parents might want to know if their child has the defect, but I also can see the possible risks of the process since it is a relatively new technology and appears to be not always accurate.

Because I know so little about this procedure and am somewhat biased, I will just provide information that I found on the internet and let you, if interested, investigate the process further.



Wikipedia
In medicine and (clinical) genetics pre-implantation genetic diagnosis (PGD or PIGD) (also known as embryo screening) refers to procedures that are performed on embryos prior to implantation, sometimes even on oocytes prior to fertilization. PGD is considered another way to prenatal diagnosis. Its main advantage is that it avoids selective pregnancy termination as the method makes it highly likely that the baby will be free of the disease under consideration. PGD thus is an adjunct to assisted reproductive technology, and requires in vitro fertilization (IVF) to obtain oocytes or embryos for evaluation.

Suite 101
PGD Testing for Familial Disease
It’s understandable that a family that carries a devastating disease would want to eliminate this from future children. But the problems of using PGD in these cases are similar to those for gender selection; the results may not be accurate, and there’s a chance of damaging a normal embryo. Genetic testing laboratories can only test for some genetic abnormalities, not all, so it’s possible an embryo that doesn’t have a test for disease could have another disease. Parents should also consider that the deadly diseases of today may have cures by the time their child needs them.
 
The Unknowns of PGD Testing
Some studies have shown that embryos with abnormal chromosomes on day three, when the cell is removed for PGD testing, may "self correct” and have normal chromosomes by day five. Obviously, this isn’t always the case, but it could mean that normal embryos are destroyed. 
 

Advanced Fertility Center of Chicago
What is PGD, or preimplantation genetic testing?
Preimplantation genetic diagnosis involves testing done on in vitro fertilization IVF embryos prior to transferring them to the mother's uterus. The testing is done either to check for a specific genetic abnormality (such as a disease like cystic fibrosis), or it can be done to determine if the embryos are chromosomally normal (also called aneuploidy screening). 
 
PGD is done by removing 1 or 2 cells usually at about the 8-cell stage (day 3 after fertilization). A hole is made in the shell of the embryo, and then a pipette is used to suck the cell(s) away from their neighbors - removing them from the embryo so that testing can be done. This process is called embryo biopsy or blastomere biopsy. Some programs biopsy the polar bodies of the egg, rather than the cells from the early embryo. 
 
Specialized techniques are then used to either check for the genetic disease in question, or to investigate for overall chromosomal normality. The testing can generally be completed in 1 day. Therefore, embryos can be tested on day 3 after fertilization and transferred back to the wife on day 4 or 5 after the results are back. 
 


What are some of the additional problems and concerns with PGD at this time?
The embryos are traumatized with PGD. The question remains unanswered as to how often they can "recover enough from the beating" to retain viability. It seems that many embryos do not recover completely. Said another way, too many normal, strong embryos are weakened to the point of being non-viable by the embryo biopsy procedure.
As with any new technique and technology, there is a "learning curve". Some technicians will be more proficient at the biopsy procedure. Some labs will also be more proficient at the diagnostic component after the cells are removed - giving a higher percentage of accurate results. Therefore, there will potentially be large differences between centers performing these techniques, and possibly even between different technicians within the same center.
 
PGD test results are not always correct

• Sometimes the embryo has abnormal chromosomes, but PGD testing shows a normal result
  
• Sometimes the embryo has normal chromosomes, but PGD testing shows an abnormal result
  
• Therefore, some chromosomally normal embryos will be discarded, and some chromosomally abnormal embryos will be transferred after PGD

IVF and PGD Costs - How much is PGD?

• PGD is expensive and costs about $3000 to $5000 in the US, in addition to all of the other IVF costs

New Research Paper on Kennedy’s Disease

Another research paper was published this week.  The Oxford Journals  article was interesting, but slightly above my head.

Absence of disturbed axonal transport in Spinal and Bulbar Muscular Atrophy

 

Abstract

Spinal and bulbar muscular atrophy (SBMA), or Kennedy’s disease, is a late onset motor neuron disease (MND) caused by an abnormal expansion of the CAG repeat in the androgen receptor (AR) gene on the X-chromosome, encoding a polyglutamine sequence (poly-Q) in the protein product. Mutant poly-Q expanded AR protein is widely expressed but leads to selective lower motoneuron death. Although the mechanisms that underlie SBMA remain unclear, defective axonal transport has been implicated in MND and other forms of poly-Q disease. Transcriptional dysregulation may also be involved in poly-Q repeat pathology. We therefore examined axonal transport in a mouse model of SBMA recapitulating many aspects of the human disease. We found no difference in the expression levels of motor and the microtubule associated protein tau, in spinal cord and sciatic nerve of wild-type (WT) and SBMA mice at various stages of disease progression. Furthermore, we found no alteration in binding properties of motor proteins and tau to microtubules. Moreover, analysis of axonal transport rates both in cultured primary motoneurons in vitro and in vivo in the sciatic nerve of adult WT and mutant SBMA mice, demonstrated no overt axonal transport deficits in these systems. Our results therefore indicate that unlike other motoneuron and poly-Q diseases, axonal transport deficits do not play a significant role in the pathogenesis of SBMA.
 
After reading the above, I asked our biology professor for a translation.  As usual, he did a great job in explaining how the process works and what this research meant. 

“There has been speculation that the reason that the motor neurons die in Kennedy’s Disease is that the transport of materials to the end of the axon is blocked.  The motor neurons are the cells that tell muscle to contract.  They have a cell body (main part of cell with all the usual cell parts) is in the spinal cord.  Each cell also has a long tube-like process called an axon that connects to the muscle cell.  Thus, the axon is a long continuation of the motor neuron - it is very long and thin (can be over 2-3 feet long in some instances).  Since the cell body is where the cell machinery exists, the cell must be able to transport needed chemicals to the end of the axon - this is axonal transport.  If this transport were to be blocked, then the axon, and thus the cell, would no longer function.  This paper apparently has evidence that this axonal transport is NOT defective in Kennedy’s Disease.”

I am not certain how this helps, but I am certain that it might be beneficial for researchers in their work.  The better we understand what works and what doesn’t has to be helpful as they search for a treatment.

I'm going to be a guinea pig

Okay, it is a done deal.  My doctor has agreed to let me try dutasteride to see if it will work.  I will pick up the prescription tomorrow.  I plan on keeping track of any positive and negative experiences and will report to you occasionally on my findings.



Unfortunately, since there is no generic substitute, it is expensive.  However, if it could slow the progression or improve my strength, it would be worth it.

For several years I have taken a ‘wait and see’ attitude.  This is my first venture into the world of potential treatments.

My logic appears to be sound (or desperate). 

• Since there is not clinical trial on the near horizon.
• And, if, on average, we lose 2% of our strength each year. 
• And, if, on average, the clinical trial group taking the drug did see a 2% improvement in strength. 
• And, if I do not experience any negative side-effects.
• And, if I am one of the fortunate ones that the drug works on. 
• Then, it is a win for me!

That is a lot of ‘if's’, but very few things are a certainty in life.

It appears, from reading the clinical trial results, that the ‘worst case’ scenario would be that dutasteride does not work for me.  It would be disappointing news, but I least I gave it my best shot.  Only time will tell and it appears that time is what is needed to truly test the drug.

Looking Back In Time …

The other day I was going through our photo album pulling out pictures to send to my daughter.  During the process I started comparing pictures of me twenty years ago with recent ones.  What a shock!  This is not a vanity issue.  It was a realization of how the progression of the disease has changed me physically.



Yes, I look in the mirror every morning.  And, yes, I know what I look like today.  Yes, again, some of the change has to do with the normal aging process.  However, I never really “looked” at myself as I did when I had two photos of me side-by-side.

• Face:  The facial muscles have declined dramatically.  Where I had temples twenty years ago, I now have indentations.  My mouth and smile were once level.  Now, the mouth droops and the smile looks like a lopsided sneer.  My face’s shape is now linear … making me look much thinner than I am.  My neck can only be described as … well … “pencil neck” stands out as a good description.
• Hands:  The change in my hands is also very noticeable.  The left hand is far worse than the right.  Between the index finger and thumb is a large cavern of skin.
• Limbs:  My arms and legs have lost almost all definition.  They are now long, thin bones with flesh (and very little else) hanging on them. 
• Torso:  Everything just hangs on my chest, stomach and hips.  I cannot find any muscle definition at all.  My dress clothes use to be tailored and fit very well.  Today, shirts and pants, whether dress or casual, hang on me.

The reality of this comparison is that, yes, I have lost muscle mass and tone, but I am amazed at how much of a difference twenty years has made.  When thinking back on the dutasteride trial results and the 2% loss of strength every year for the placebo group, I multiply “2% x 20 years” and WOW that is a lot of muscle loss.

This proves what I have been saying for some time.  The benefit and curse of Kennedy’s Disease is that it is a slowly progressive disorder, but it never stops progressing.

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!

The new Kennedy’s Disease website

For those of you who did not receive the announcement yesterday, the KDA launched their new website.  If you want to take a look, follow this link:  www.kennedysdisease.org .  The reviews from site visitors have been great.  It provides just the right amount of motivation to continue tweaking and improving the site.

The last couple of days I have been very involved with the launching and today I am involved in more ‘live’ testing and tweaking.  For that reason, there will not be an article published today.



Come back on Sunday for my next installment on “Living with Kennedy’s Disease.  As always, thanks for reading and commenting on my articles.
Bruce

Acceptance is what I am working on today

As I mention in my blog introduction (the right column), “acceptance is what I am working on today.”  The interesting aspect of “acceptance” of a progressive condition is that once you have accepted your current state, it changes.

Wikipedia defines ‘acceptance’ as:  “A person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit.
Religions and psychological treatments often suggest the path of acceptance when a situation is both disliked and unchangeable, or when change may be possible only at great cost or risk.”

I especially have trouble with the “without protest” part.  As I also mention, living with Kennedy’s Disease is a journey … a long arduous one of self-discovery.  Since "nothing comes into experience uninvited," I must be open (receptive) to both the good and the bad that accompanies these life experiences (changes).

My current challenge is with my left thumb and index finger.  They are weakening rapidly.  The situation has degraded to a point where I no longer trust picking up or holding objects using those two digits.  Washing dishes has become very difficult because I cannot reliably hold a soapy glass or dish while I scrub.

Like anyone living with Kennedy’s Disease, I continue to adapt to the most current loss of capabilities.  Drinking glasses that are smaller in circumference or have handles seem to help.  Balancing the object (i.e., a plate) on my palm when carrying it also helps.  Change … adapt.

Even though I have figured out a bunch of these “work-arounds”, there are still some I am struggling with.  For example, buttoning or unbuttoning a shirt and its cuffs.  And, my jeans require some strength and dexterity with those two digits.  Carving a chicken or turkey often requires the grabbing of a part (i.e., leg or wing) in one hand while cutting it with the other.  Flossing teeth … getting to the back ones anyway … require two hands.  Touch typing works best with ten digits functioning normally.

I know I will eventually figure these “work-arounds” out … or just end up asking for help.  Yet, that does not help the frustrations that come with another loss of capability.  And, since I am not normally considered a patient man, acceptance of a new loss can never come fast enough for me.


Learning to live with Kennedy’s Disease is a long and winding road with many obstacles and opportunities.  "Acceptance" is what I am working on today.  For without it, I will never be able to take the next step on my journey.