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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