My mother's pathology has been completed

[Guest guest]

Hi, all. I've taken a few weeks away from posting so I can find a new " normal "

in my life following the passing of my mother on March 5. I'm not quite " there "

yet but am working on it.

Thanks to the help from Robin Riddle on this group, arrangements were made

well-prior to Mom's passing for a brain tissue donation. (The arrangements were

made with Mayo Clinic, primarily because they are involved with both LBD and

Alzheimer's research with donated brain tissue, an important point in my mind.)

It was a difficult decision for me to make because I could not discuss it with

Mom. My family was initially not in support of the tissue donation. Their

thought was to let Mom rest in peace rather than disturb her remains once that

time came. I just kept thinking how much knowledge is still needed to identify

this disease while the patient is still alive and able to benefit from

appropriate treatment. And, I wondered if Mom's earlier brain tumor was a

factor in the development of Lewy Body with Parkinsonism. In the end, after all

the mental struggles, I wrote my family a letter to explain my thought process

and asking for their support in my decision to have the tissue donation done.

My mother loved her family more than life itself. If she could have shared the

discussion, I truly feel that she would offer the donation if it meant it might

help her family and future generations.

Because my mother was not part of any official study (there were none when Mom

was first diagnosed…studies focused on Alzheimer's), it was necessary to provide

sufficient documentation that would be acceptable as a medical history for the

study to be effective and well-founded in its conclusion. To accomplish this,

it was necessary to contact both of the neurologists who had treated my mother

over the prior 10-year period as well as the neurosurgeon who performed the

surgery to remove the brain tumor. Thankfully, all physicians did comply with

the request in a fairly timely manner. Our request was approved. I can't

recall the timeframe but it was not an immediate process.

Following the approval and arrangements with the pathologist, it was necessary

to bring the facility where Mom lived into the picture because timing is

critical for a valid donation. Hospice was also brought into the picture

because they would be caring for Mom as her journey ended. The coordination had

to be done on all sides in order to ensure that everything was in order for the

process to move smoothly.

These details are described at length in order to emphasize the need for early

planning. This is certainly not an issue that can be handled quickly, nor can

it be handled during periods of emotional duress. While I struggled with the

decision initially, after it was made, it was a matter of ensuring that all were

aware of the approval…and reassuring that all was in order as Mom's final days

began a countdown under the watchful eyes of Hospice. I felt a great sense of

peace because there were no loose ends to be tied.

The results of Mom's pathology were phoned to me today. Indeed, a quick

turnaround--less than a month after her passing! The primary involvement was

Diffuse Lewy Body while the secondary was early stage Alzheimer's. Once I have

the report in my hand, perhaps more details will be known. However, the

important thing is that the tentative diagnosis while Mom was alive and very

involved with this disease was correct. Early diagnosis leads to effective

treatment for an easier journey.

For all who are still in this disease process, please consider arranging for a

tissue donation. In the brief time since Mom's passing, I have learned of three

additional " new " diagnoses and suspect a fourth will be forthcoming. I am

concerned that the frequency of the occurrence of this insidious disease seems

to be increasing, at least among those that I know, some near and some far away.

Only through research can a better treatment be discovered. Only through

research can a possible cause be determined. Only through research can future

generations not fear a heightened possibility of this disease affecting either

themselves or someone they love. I never again want to feel so helpless against

an onslaught of symptoms that have such a devastating effect on someone I love.

As side notes, one of Mom's former roommates passed two days after she did.

This woman died of Lewy Body but her journey was much shorter and much more

tortured than Mom's. I read today of a short-duration form of the disease.

Perhaps that was what was involved in this case. Or, perhaps the treatment she

received was not appropriate for Lewy Body. Hopefully, research will mean that

more professionals will be educated so that they can ease this journey. And, as

a final coincidence, the woman who took Mom's place in the facility has also

been diagnosed with Lewy Body. I have gone back several times because

relationships were formed with staff and other residents; those relationships

have suffered a loss with Mom's passing, too. As I look at the residents who

became so familiar to me, I am struck with how much still needs to be done in

both research and in education. Two quotes seem to emphasize the need for

research:

" Medical science has proven time and again that when the resources are provided,

great progress in the treatment, cure, and prevention of disease can occur. " ~

J. Fox

" There is no medicine like hope, no incentive so great and no tonic so powerful

as expectations of something better than tomorrow. " ~ Orison Swett Marden

My very best wishes go to all who are still in the midst of this disease. My

heart, thoughts and prayers are with each of you.

Best wishes,

Lynn in Florida