MSA/ Parkinson’s/ My Brother/ Family


Who knew that my brother Al’s illness would make such a huge impact; his death. I have my MSA page, which hopefully allows patients and caregivers to come find a smile or maybe get a question answered, or just feel comfort in being in surroundings of those who understand.

I teach Hospices or people about MSA as well as I can. I try my best to be there for others, plus it lifts my own spirits in my days of not feeling well.

Last week, I was approached by a Doctor who wanted to see if I would show interest in a genetic study.

Dr. Vikram Khuran is the name of the doctor. He had been reading my post on Facebook about the possibility of MSA (Multiple System Atrophy) and Parkinson’s being genetic. There is already great concern for these neurological diseases being environmental.

I had stated that I am the fifth person right down the line to have Parkinson’s. There is also suspicion from my neurologist that I may have MSA/C. My father had Leukemia and Parkinson’s. His mother and her sister had Parkinson’s. My brother had MSA/ P.

This is all pretty coincidental, I would say, so I posted to see if anyone else may have these similarities. Well the good doctor took it one step further and asked me if I could venture any interest in others and myself participating in a genetic study or perhaps testing, or maybe both? Do you know someone who lived around electrical towers, lived near crops that were sprayed with chemicals, ever had water issues? Are there more than one in your entire and extended family with a neurological disease? If so, please think about emailing the doctor, expressing interest in this study.

I heard this evening from the doctor that there is much interest. I had made another post informing patients of the doctor’s wishes, and patients are responding in a very positive way. I am just thrilled to pieces.

What if this is the answer? What if this turns out to be a very important key or even better breaks that secret bank of what causes these diseases? Oh, how my mind races and I thank God for allowing me to be my brother’s sister, caregiver, and a huge part of MSA.

I promised you Al, I wouldn’t give up. I promised you I would help find or be a part of a bigger project to beat this beast( as you called it). I can’t admit my heart still doesn’t ache for you. I have to say, I think of you every single day; but maybe, just maybe, Alvin Miller, there is going to be a  positive out of this negative disease.

Below is a photo of Dr. Vikram Khuran.

Here is a link to speak a little about him.

Neurologist Vikram Khurana brings a new perspective to Parkinson’s disease research

 

 

WE ARE FAMILY

We are family
Brothers and sisters you see
MSA is the link
That almost put us on the brink
It brought us all together
To ward us from this weather
We shall connect in soul and heart
Nothing will ever tear us apart.

Written by,
Terry Shepherd

https://www.facebook.com/terry.shepherd1

 

If you or someone you know may be interested in participating in this genetic study; the doctor would like you to email him at; vkhurana@partners.org.

 

 

 

DR.

Am I Dead Yet?


When things aren’t going well for others, I am right there in spirit. When things aren’t going alright, for the most part, I ignore or try to deny, when it comes to myself. Last night, a friend of mine made some comments that threw me into the now mode.

They weren’t made to hurt me, the comments were made because my actions are becoming quite clearly noticeable. I went to bed feeling a little down, and with the added pain I go through most days, I was anxious to welcome sleep and forget all that was said.

Are you the last one to admit changes are happening to yourself because of aging or maybe an illness? I am. I was told that I should enjoy my life more and live life to the fullest while I still can.

I understand this to a point. I do the best I can, and way in the back of my mind, I notice my changes. What was actually being said, was, my lack of walking gracefully and easily were gone and it is being noticed.

I was told I am slowing down, and I definitely notice this. I used to clean a whole house and maybe rearrange a couple of rooms also. Now, I will run the sweeper and dust, and am pooped out.

I was reminded that my veins on my legs are protruding more because my skin is more flexible now. Thankfully, I don’t suffer from pain from this and take it as part of the aging process.

All in all, the good I found in this conversation, is live life to the best you can, before it’s too late.

AM I DEAD YET?

Getting older is not to brag

The body slows, the breasts sag

The skin once tight

Now shakes with might

Once shapely legs

Now sits and begs

For rest and rubs

And pillows fluffed

Crows feet appear

Very close to ears

Smile lines

Are strong to shine

Beautiful, thick hair

Don’t need the Nair

No more dentist visits

Dentures and pick its

We have to laugh as we all age

It’s just another line on our page.

 

Written by,

Terry Shepherd

07/14/2016

 

me today 3