I Will Treasure Today, and Miss Yesterday


I saw a quote fly through my Facebook page yesterday. It hit me hard as I have lost a few good friends. One I had never met in person, but knew well from Facebook. The other I knew.

It tears at my heart when there is a loss in my life. A few years back, I lost my first good friend through Facebook. It made it a reality. instead of just a Facebook. I wept for some time over not being able to s speak to him anymore. He was an awesome guy, who lived in a wheelchair; but  his attitude about life, was better than most walking people’s were.

Then there was another time I had a male friend, Andre, from the Netherlands. He was awesome. His wife and him and I , had shared many phone conversations. Christmas and birthday gifts and cards were exchanged. It was one of the best relationships I thought I would ever experience; but I was wrong. There were more relationships to come. Andre passed away at the age of 86, and I still miss him today.

There is Viveka G. who is one of my dearest friends. A dream to meet her would be so awesome. Ute L. is another friend I have made who stuck by me through thick and thin throughout Al’s illness.  Marilyn G. and her husband came up to meet me and Al. It was the best visit. They are a wonderful, loving couple. These ladies are my blogger friends here at WordPress. Now these  ladies are alive and well, and they better stay that way, or else!! LOL

Another blogger friend I miss so bad is Sandra Callahan. Oh the times we spent talking and writing to each other. My heart still breaks. I lost her friendship last week. Yesterday, I lost another friend, whom I knew in person and here at Facebook. Ruth Bettinger Nichols. She passed away from cancer.

Who ever says you can’t make friends through the Facebook, have never truly been involved with this site. To, these friends, I will miss you. To those who I still chat with, I won’t let you go. I WILL TREASURE TODAY AND MISS YESTERDAY

 

I hope God enjoys your friendship as much as I did.

Ruth

Ruth

Sandra

sandra callahan

 

facebook quote

Terminal Disease


My daughter is at work. My granddaughter is ill and dad took her to the clinic for medications. I am here at home with the dog and the cat. Quietness roams the rooms and  now comes the time when my brain starts to chatter and I must write down my thoughts so I won’t answer myself. (docs say that is when family needs to begin the worry stage, lol)

I just received an email from a nice lady who is with right, concerned over her father’s health. He has been diagnosed with MSA, which for some of you who may not have been long-time followers, stands for Multiple System Atrophy.

I have made many friends through this wicked disease. My own brother suffered from it for seven, long years. He passed away March 24, 2014, which some days feels only like yesterday.

My heart breaks and the blood seeps once again when I learn of another warrior seeking and finding their wings. MSA is a neurological disease which leaves the body helpless in every way in the end and you weep and give thanks at the same time as they leave their earthly bodies for a healed one in heaven.

Some family members seek me out through my WordPress blog here and others know me well from Facebook and yet others know me from my Facebook page I set up after my brother’s passing. I always thank the good Lord for still using me to help others. It is as if I can be of further help although my brother resides in heaven now. I wanted to write this post, because as sad as it is to write, let alone say out loud, others are being diagnosed each and every month. There is still no cure, but there is so much hope.

My Facebook page, which you see the link below, has information and hopefully I have placed some items that will make you smile and forget the worry and pain for a few moments. For those who want more medical reading, please visit the link below on MSA.

http://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/basics/definition/con-20027096

or; and

http://www.ninds.nih.gov/disorders/msa/msa.htm

 

 

THIS IS A BIT OF SIMPLE INFORMATION I CAN GIVE YOU FOR  NOW FOR NEWLY DIAGNOSED OR IF YOU HAVE NO ONE TO TURN TO.

There seem to be several stages MSA patients go through. The first one is maybe tremors with a little clumsiness. This stage seems to last the longest. A cane may start to be used during the second stage, with a walker and then a wheelchair. Following this he may experience some swallowing and choking issues. The doctor may order a swallow test, but this doesn’t help the patient, it only helps the family to realize it is real. Falls may happen now at this time along with constipation issues. Family and caregivers should be introduced as dressing, standing, transferring may become a problem. These stages seem to go rather quickly. From the cane to a wheelchair and all in between.
There may be pain introduced, in legs especially. You may notice stiffening from his body. My brother’s head turned sideways and ended up leaning over and touching his shoulder. Body parts may become locked in position. Incontinence will most likely occur with higher risks of urinary tract infections, which can come over and over. A catheter may be introduced and adult briefs. The last two stages are the hardest on all. Bed bound and unable to move. Everything has to be done for the patient. Rolling, turning over, bathing, feeding etc. Foods may have to be altered often. Thik-it is a product that is placed by the tablespoon in broths, drinks, including water. It will form into one of three consistencies.
Caregivers and family members will constantly have to work at different ideas to keep communication going. For my brother I used the wink of an eye, squeeze of a finger, flash cards. In the end there will be no communication and anyone caring for him will need to know his  habits and routines very well.
For my brother, the last stage was the ultimate worst. Can’t take sips of water, barely ate, usually if I could get anything in his mouth it was sherbet. When you are in these last two stages, always make sure the head is risen two pillow heights. Also contact hospice and try to get a hospital bed. Pain medications will be the only medications used at this point. Any prior medications will be ignored once Hospice is involved. It will take two caregivers most of the time at this stage.
If you can help it at all, don’t place him in a nursing home at all. I did this to my brother because he was falling so often, I thought I needed more help. Nursing  homes and most doctors do not understand MSA and the care will be minimal.
Make plans now with family so there is a plan in force as the time nears for his care to become more involved. Find out what his final wishes are for things such as choking, feeding tubes, heart stopping. Get this all in writing. Give a copy to the hospital, doctors and keep one for yourself.
This is basic instructions I am giving you. There are some patients that suffer more than others. My brother was one of those rare ones who suffered extensively. My phone number is 574-306-8290; if you are inside the USA, and ever need to talk further than an email or have immediate questions. My email is tellmenolies2004@yahoo.com  for those outside of the USA.
I live in Russellville, Kentucky, just so you know.
Here is a link to my page on Facebook about MSA. There is information on it, plus things to see and read to hopefully make a smile appear.
 
 Contact me any time my friend.  Just be prepared to always try to make the patient  smile, talk about the good times in the past, when they are bed bound, make sure to turn them every hour. Tell them daily how much they are loved, and if you pray, pray all the time, this disease is wicked.
Love and hugs,
Terry Shepherd
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How Far Would You Go?


How bad is it when you want something? Bad enough to fight through fog? Is what you want so bad for you or for someone else? Does it make a difference?

I was reading a story earlier about a mom and a son. From the time the son was very young mom knew something was wrong. She took her son to doctors; in fact, she took her son to over 20 doctors.

Would you do this? 20 doctors? What if each doctor said something different? What if most doctors brushed you off or said there was nothing wrong?

This mom stuck to her guns. Her instincts are what she followed. She knew the doctors had to be wrong. She kept searching; finally leaving her home-town with the toddler and driving two hours away to a doctor she had heard about. She didn’t have an appointment.

I believe she was on a hunt, an answer is what she demanded. Would you drive two hours to a doctor you had never met, only read about, and on top of that, without an appointment?

receptionist

Well, you know it. The receptionist said they had no appointments for that day. She even added one could be had but it would be almost two weeks away. Would you leave and accept the latter appointment? What would you do next after hearing the disappointing words?

The receptionist did add, ” You can go over to the hospital. Maybe they can see him in the ER and discover what is wrong.”

Mom did it. She was not going to let the bull run over her. She and her son spent two days in the hospital with her son being probed and the two questioned. At the end of the 48 hours, the answer came back. ” We don’t have any idea what is wrong, but there is one neurologist that wants to find out what it is.”

She let her boy be tested and the results came back. The boy had a rare disease. Mom’s instincts were right. The toddler suffered from,Creatine Transporter Deficiency. There was no cure, but the mom was so relieved to hear that there was a name for something her son had. She walked out of the office with a smile on her face.

How would you feel if you heard you had a rare disease that was not curable? Would you smile like mom did?

If you are interested more in this disease, please click on the link below I have provided.

http://www.ncbi.nlm.nih.gov/books/NBK3794/

Marijuana, Pain Pills, and Natural Alternatives


I am sore and unsteady today. My feelings are more of sadness, thinking too much or maybe not too much of my brother Al. But, I changed my mind about blogging tonight after reading a dear friends post tonight. Her name is Sheri and here is here website.

http://sheridegrom.wordpress.com

Her post brought back the hole in my heart caused from the  overly medicated state  my brother became from medications with his MSA. I knew years ago that Al may die an earlier death than so-called normal people. This is true of so many that are mentally challenged.

I asked myself why bother. Why go back into details of my brother. It won’t bring him back. In fact, it places those sad memories on the front burner of my brain. I then knew that the reason I wanted to write was because I felt drawn to speak up on Al’s behalf for anyone who has a terminal illness or an illness that is ongoing like what I have; Diabetes.

In our Western world, doctors pump pills and patients usually take them without questions. We tend to lean on the idea that if we don’t pop pills, we can not be healed. We take so many antibiotics that our bodies can no longer fight infections as well, as it becomes immune, therefore causing what we have today known as Super Bugs.

The biggest Super Bug we have at this time is MRSA.

Staphylococcus aureus (MRSA)

Staphylococcus aureus (or informally referred to as “Staph”) manifests itself in many ways, but is probably most famously known as “flesh-eating bacteria”. About 25% to 30% of the general population is colonized with Staph in their nose or on the surface of their skin, but if it finds its way beyond the skin barrier, it can cause a variety of infections, ranging from minor skin infections, including pimples or boils, to more serious infections that can lead to fatal outcomes, such as pneumonia or sepsis.

For many years, penicillin and methicillin were considered excellent treatments for Staph infections. Strains of Staph that are resistant to methicillin were first observed in hospitals and other healthcare facilities. However, in recent years, community-associated MRSA has become more prevalent. A recent article in JAMA estimated that in 2005, MRSA infected nearly 9,000 Americans, in whom 1 in 5 infections were deadly.

My brother was definitely very ill with MSA. It was a rare disease with no cure in sight. I don’t blame any doctors; for all they know how to do at this date is prescribe pills or liquids and patches for pain.

Again I repeat, each pill we take causes some level of side-effect. There are medications that can cause death. Even with my Diabetes, some of my medications slow down my metabolism, which keeps us diabetics on the heavy side. What we need is a medication that speeds up our metabolisms, helping us to lose weight, therefore keeping our sugar levels under control.

My brother was put on heavy-duty drugs to try to keep the pain away, but the high price he paid was a sooner death. Medications to help pain cause other infections. They can change the heart beat, cause UTI’s, even make our brains go hay wire.

If I could have had more choices in Al’s level of care and I had an abundance of funds, I swear after seeing what he suffered from side-effects, I would have moved us to a state where Marijuana was legal.

Sure, he was going to die, but just maybe he could have had some sort of normalcy during his months remaining. Instead what I saw was a brother who saw flowers dancing on the floor, or uncontrollable laughter or tears.

If I get a terminal illness, I don’t want to use the rat poison that is in Chemo Therapy. I want to try other countries ways of treating illnesses, without all the pill popping. There is herbal and Chinese, really there is so much more out in the world than what we see in front of our noses.

I guess I am done posting. I want you to  understand if I need a medication or you need one, I agree with going to the doctor, but a terminal illness; now that is the topic I am talking about.

I will always remember what my dad said three days before he died of Multiple Myeloma; which is; Multiple myeloma is a type of cancer that is caused by malignant plasma cells that proliferate in the bone marrow and produce abnormally high amounts of a special protein.

He said he would have turned down the chemo and lived out his days with a natural outlook. No chemo, no tiredness, or vomiting, or weakness. He said he would have traded all that in for just a few more months of feeling better. I agree with him, after I took care of him and saw how he suffered, and worse yet, died anyways.

I know that seeing so much illness in my career, I don’t really want to know what is going on with me. I am afraid that I won’t enjoy my life. I will become obsessed with how I feel, doctors, medications. I would rather try a natural healing and enjoy my kids and grandkids to the end.

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