Myelodysplasia, and onward to dementia

0 Recommendations

This is a hard thing to write, but I hope that this story at least provides a little insight into what was a very difficult journey for my father.

My father died in February of 2007, after a long battle with mysterious symptoms which included a decline in his physical stamina as well as progressive dementia.

A little background: My father did some of his post-doctoral work at a cyclotron, researching elementary particles and nuclear physics. At that time, the risks of radiation exposure were less obvious than they are today, and there is little doubt that he was exposed to unhealthy amounts of radiation. Many of the research facilities of that era are now to "hot" (radioactive) to safely enter.

One of the earliest symptoms he faced was a marked decline in his physical stamina. After much testing, the best the doctors could come up with was a diagnosis of "myelodysplasia." This is a broad term that basically means dysfunctional blood. In his case, his blood seemed to have a reduced ability to deliver oxygen, as well as a reduced ability to fight infection.

It is suspected that radiation exposure can cause myelodysplasia, possibly by damaging the ability of bone marrow to produce healthy blood cells.

By all accounts, my father was a very intelligent man. One of the things that intelligent people do is to develop ways to deal with their own shortcomings. Ironically, these tactics certainly delayed the diagnosis of dementia, to the point where things were pretty far along before any alarms went off. By the time it became clear that he needed help with managing his conditions, it was really too late to do anything.

As best as anyone could tell, the myelodysplasia may have caused, or at least intensified his mental decline.

One of the silver linings typical of Alzheimer's type dementia is that the sufferer is often blissfully unaware of their decline. While this may seem like a terrible thing to say, I can tell you that my dad was definitely aware of his decline, and it was a terrible thing for him. He had always enjoyed his intellect, so his mental decline, and his awareness of that decline made the ordeal doubly cruel.

I leave treatments as a footnote, since every medicine the doctors tried just seemed to intensify his confusion, sometimes triggering dramatic hallucinations.

5 replies

It is so sad to hear about your fathers death and disease. There are so many rare diseases out there that the doctors are not checking for and we need to do so much of our own research. I pray you will find peace with answers to a real and often felt need, maybe if only to know for sure what really was the problem. I have had to do a lot of research to find any answers to my physical ailments and wonder if they could have been helped sooner if we knew the right dignosis before further decline. It is a very common problem, I am finding out and we have to keep looking for real answers. Thank you for sharing with us. (:

skittles --

Thank you for your kind words. I agree, the state of diagnostics is ... woeful. Another problem we ran into was with doctors that seemed to "write off" my dad's case. I guess they didn't feel there was any reason to treat what they saw as a not-profitable or hopeless case.

Finally, as I mentioned, my dad was very curious, and he wanted answers. Once the nature of his illness started to become more obvious, he knew the end was coming, and his main reaction was resigned curiosity. That's when things got scary/frustrating, because what we learned is that doctors are really good at meaningless doublespeak, and seem very reluctant to tell it like it is.

Hello Peter, I have two blood disorders, Hereditary sherocytosis(deals w/ the spleen) and Factor V leiden mutation. Both of which I inherited from my mother.
I want to express my condolences to you for the loss of your dad. Not sure how old he was but doesn't matter
My dad has Dementia due to hydrocephelus(water on the brain). The docs say it can just happen. I know he has suffered from depression A lot of his life. He also(after my mom ran off)raised us three children the best he could. It hurts me that HE has this and not my mother but I know things are not always fair. Take care and be well. Kota

kota --

Thank you, I appreciate your comments. I'm sorry to hear of your father's dementia. I hope you can find peace in the face of what certainly seems like an unfair situation.

Pete.

Peter
I wanted to say how sorry I am about your dad. I just joined this suite and have found your info useful with my moms dementia. I agree that all the meds they give her make it worst. My mom had a blocked carotid artery in her neck that they think caused the rapid decine in her memory. She had surgery to open it last week however it is too late to save her brain. I just try to help her as much as I can while trying to manage my own Sarcoidosis. It is not easy.
Please continue to share your experiences with the group because as we all go through this it helps to share information.
Bunkie

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 296,523 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 80,179 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You