Last year I was diagnosed with Parkinson’s. I have continued to progress with swallowing and choking issues. I tend to fall or am constantly working on not falling. The next thing that happened is what sent me to my brother’s neurologist. I was getting the worst headaches I have ever had, and I never was a headache gal.
I was a little afraid I had MSA/P like my brother, so this is why I decided to go to my brother’s doctor instead of my regular neuro. I needed a second opinion.
He ran me through so many tests and I guess my body didn’t like it. I had tremors everywhere possible. My toes curled under and froze. My legs became stiff. I was a mess, but I think that is what he wanted to see from the tests he did. Along with blood work and brain scans, I was again diagnosed with something close to Parkinson’s, but not actually.
It is called in simple words, Ataxia Parkinsonism.
While I am not thrilled with this, I hope to be able to do some living for quite a while yet. From what the doctor said, I will most likely end up in a wheelchair. In a wheelchair I won’t fall though, right?
I have taken a couple of days to let this soak in. Today, I decided to give it up and take some photos through the front windows. Here are the photos I took.
No matter how hard I am trying to stay positive, today is not one of the good days. It isn’t my health; but yet my health plays a giant role. I am not unique; there are many in my situation. I can’t beat it; neither can anyone else, unless they know something I don’t.
By now, I bet your curiosity is up. Well, I will tell you. If you are disabled or living on the government’s assistance, you can smile and think,∴yes, I know what she is talking about now. Yep, I got it.
Now don’t get me wrong. I am thankful for the roof over my head. Heat when I need it and for being alive and safe, but I almost wish I lived with a roommate where help was more available. When you lean only on yourself, there aren’t many doors open. My problem is I pay the least possible in what I find I really would not like to live without, and this mainly includes; a way to reach the outside world or EMS, or talk to my kids, the cheapest of ways to be able to use the internet and the cheapest and lowest way of having sound within these walls.
Of course, there is auto insurance and other bills that deem important. Providing food is a task each month. I drive mainly for visits to the doctor, or visiting family. I guess it doesn’t really matter does it. The point is, everything seems off balance.
Not enough to live on and you know why? Because I made the choice to stay home and raise my children instead of working, therefore not giving me enough credits to get a nice monthly check. Things will never change. When I reach 65 I won’t get anymore in my check.
This is when I hate Parkinson’s with a passion. It stops me dead in my tracks. I can’t get work. If I get work, I lose my medical insurance I carry through the government, or my rent raises so what’s the point of working? You can’t win over the system. I can’t work 40 hours, I can barely stand and walk for more than a little at a time. Part/time work threatens a loss of help, which could cost me more dollars in the long run, then of course there is the issue of my balance.
So I would not have insurance offered by the company and would be forced to purchase my own. Have any idea what insurance purchased privately cost for a diabetic patient? I do, way too much.
I am so down in the dumps right now, because I know this is the way it will be until I die. If you have a job; be thankful. If you are dead tired, sleep. If you don’t have much money after paying bills’ thank God they are paid, next month is going to be different. If you don’t have to worry because the cupboards are getting bare, it will be alright, you have another paycheck coming in soon.
I guess what I am saying is; be grateful, life could be worse.
Hello Dear Brother
I ride your scooter, you probably know
I use the walker, like you did bro.
I have a cane as you did too
Sometimes dear brother, I see me in you
You had an illness called MSA
Maybe I have it, some docs say
I have your Parkinson’s, no doubt of that
I tend to fall just like your past
People say this can’t be passed on to me
But my symptoms are very hard to flee
If you hadn’t gone to heaven so soon
We could share these scenes without the doom
I’m going to see your neurologist
The one who gave the song of bliss
He’ll ask me questions that he asked you
I’ll remember your answers that rang so true
I sometimes feel better because I know
You’re walking with me, every step I go
I feel so close to you these days
Because I resemble your MSA ways.
I love you brother, stay near me now
Because it is possible I’ll have to take that vow
To keep strong, and hold onto my faith
Just the way I made you when you paved your way
I’ll ask our God to guide me through
Just like the way I prayed for you.
And if the day comes I have to leave
Keep your promise and save a seat for me.
Most of you already know me, but for those who don’t. I write from the heart. I write short stories and poetry. I have had Parkinson’s for three years. I was a caregiver for about twenty-five years. I teach Hospice groups about a rare disease called Multiple System Atrophy. I have published two books, Dahlia and Al his life & MSA.
Here is my latest photo of yours truly.
So, you went to the doctor
You received the word
Now what ya gonna do
Shrivel up like a bird?
Hell no, you won’t
You can’t do that
You got to pull your panties up
And put on your hat.
You will get involved
You will tell all
You will do all you can
You will stand TALL.
You will have moments
Where tears will fall
Then you will dry tears
And stand for all.
You will eat right
Follow doc’s rules
Using all tools.
And if in the end
You meet heaven’s doors
You have left behind
People to fight this war.
Say it isn’t so
This isn’t in the plan
I worked hard my entire life
I did all without a hand.
The doctor said it’s true
The test, he showed to me
I hid my head and heart
Fell down on bended knee.
Oh God, what did you do to me?
Didn’t I do what you asked each day?
How could you let this happen
How could you make me pay?
“My child, I didn’t place hand in this.
This comes from other than me.
I don’t give anything but my love
There is no price to pay.”
“I promise I will stay
I won’t let you walk alone
I will light the path before you
I will shine where you have shone.”
Sometimes bad things really happen
To those we love so dear
We must place our faith in God
Whom we trust and love so dear.
I don’t know why my brain insist I wake early in the mornings. Being retired means sleeping in. Perhaps my brain thinks I am still a young kid. I know that my mind and my body do carry on different conversations.
I rise before the daylight shines. I force myself to go back to sleep, only to awake an hour later. I hear the birds singing, which I do love to listen to. I sit up in bed and look around. I ask myself, what am I going to do today? There is many hours that lay between crawling under my bed covers again.
Part of me feels a peace. No stress slamming me is a nice thing. I think it is more about being tossed out of my comfort zone. That seems to be an issue with me ever since Al passed away.
I got used to being in demand. Al would honk the bike horn sitting on top of his bed side table, and I would go into his room and do what I could to help him. I remember him requesting me to start the movie The Christmas Story, over and over again. Still today, I can’t watch that movie, but some day I will.
I remember him asking me to help his pain. There were baths to give, bed sheets to change, meals to fix, feeding him, cleaning him, talking to him, watching TV shows together. He took a lot of work, but you know what? I didn’t mind at all. I knew he needed me.
Perhaps I have this illness that I am not aware of, which has a name, but has not been assigned to me yet. I bet it is called, Stuck in the Middle. Somewhere between seeing a future and seeing the past.
I talked to my daughter briefly last night. I got the feeling that she and many others believe I should be on cloud nine, as I am now in my own place. I am able to make my own decisions, go when I want, return when I choose, but something is missing.
I still feel weird inside. The truth is, I think I am done. I took care of so many patients and I took care of my dad and brother. This was my purpose here on earth. Now, I can’t work because of this Parkinson’s thing. Feeling off balance on my feet is a big issue in my life.
It has forced me to become part of the system. It forces me to remain in one spot. It keeps me from becoming better in the finances department. I feel like I don’t do anything but get through each day. I wait to crawl in bed.
I miss the past, I don’t see a future. I want it over. If I can’t have a better income, if I have to wonder where my next week of groceries are coming from, I am not interested. I know that sounds hmm, cold? uninterested? I guess it does, but these are facts I live with daily.
I have lost my purpose. Yes, that’s what it is. I want what I can’t have. I want my kids and grandchildren close to me. I want to be needed again. I think about volunteering at a hospital, but right now, those patients seem like strangers to me.
I do enjoy my camera still. I do love my painting, but to be very honest, the motivation is gone. I hate having to force myself to want to do these. I wish I would change. I can come out of church and be so happy that I am alive. I see light where there was darkness.
I am still loving helping the MSA patients, but I wish I could help in person, rather than through a black screen and keyboard. I still love writing poetry. I can see that I still enjoy some things in life, and this is a good thing.
But what is wrong with the rest of me? Why in the world would someone, anyone want to be stuck in neutral? I don’t know, I don’t get it nor understand it. I will get through the day. I will putter around my apartment, and then I will crawl back into bed.
Yesterday, the tremors finally stopped. I felt like a new woman. It was rough during those times. Walking is very difficult because when my legs tremor, they also become weak.
I read this post on Facebook about a woman who also has Parkinson’s. She had been in a public place and someone made a comment loud enough for her to her. It was pertaining to her being drunk. Thankfully, she put them in their place.
I have thought that too about myself. How do I look to others? How bad do I sway back and forth? Do I look drunk to others?
No one knows unless you have gait issues, how hard we fight to look and act so called “normal”. For me, I have to concentrate very hard to walk as straight as possible. When in public, I have no choice but to hang on to the cart, or ride the public scooter. If I know I am going some place without special equipment offered; I take my brother’s scooter.
Stores are not thinking about wheelchairs and scooters when they display their clothing and miscellaneous racks. I went to Macy’s. There were several areas my scooter, which is not a big one, could not fit through the small spaces; especially the purse department. I had to get off my scooter if I wanted to look closely at choices offered, or forget looking all together and move on to a different area. I wish businesses would consider a different layout for their racks. Should I let Macy’s know my thoughts?
I don’t get out too often. When I have doctor’s visits, I try to stop at my son’s house. It is a mood lifter for sure. The grandchildren are there, and I can guarantee some good laughs.
I also live a half-hour from my home town and it may not be a big issue to most; but for me, keeping my feet on the gas pedal is something of a chore. This causes me to stay around my own area more or stay at home. I sometimes wonder how much longer I will be able to drive, but I don’t like to think of that.
When we become older, life changes, and most of these changes occur with looks, strength, and the ability to run around like we used to. I like to go to town during the week days. The weekend days are filled to the brim in the stores with people, children running, and plain chaos.
Some things in my life I don’t get as upset over as I did when I was younger. An example would be a spotless home. I used to be a fanatic about it, but no more. Now I give myself a pat on the back, like tonight. No tremors, so I was able to mop the kitchen and bathroom floor and sweep the house. It felt good. You have to grab those good moments and run with them, in case the next day is a set-back.
Life is good when it is good, and it is bad when it is bad. I vote for the good to continue.
One day you look into your mirror
And you reach up and touch your face
You notice dips and drops
Taking up once silky space.
The years, they slip right by us
Most times we just don’t see
Or perhaps we just ignore them
Praying time will stop and seize.
Years of smiles around the lips
Worry lines around the eyes
Hard work has lined its marks
Dark circles from saying goodbyes.
A history we now wear
With pride for what we’ve done
You smile back at yourself
Realizing a new chapter has begun.
Remember this game from back in the teen days? A chance to laugh, maybe be embarrassed by the truth, perhaps choose a dare. Whatever the case, we were entertaining ideas we didn’t do on a daily basis, and hoping for a good outcome. We had choices.
I have a very close friend, who lives across the waters, whom I was lucky enough to meet when my brother was still here on earth. She became a dear angel friend of mine, someone I could cry on her shoulders through my own weary words on my computer.
Her husband and my brother were thought to share the same illness and this is what drew us together. When a loved one is suffering, especially a terminal illness, drawing near to those who could possibly understand, is where we huddle.
Unfortunately, my brother’s diagnosis turned for the worse. He ended up having a rare illness with a much shorter life span. Today, he has been gone two years. While I still go through my trial of separation of getting used to living without him in my life, I dig deeper into my feelings of understanding as I read the words of my friend, speaking about her life and her husband’s health.
Memories come flooding back. No, it doesn’t make me get any extra sad then I may have already been that day. It actually makes me acutely aware of how she is feeling and perhaps be able to give a comforting word along with my prayers.
Sadly, I have to say that she is now in that roller coaster ride; the truth or dare game of life, that I once was. One day, hope enters, the next day, thoughts of funeral exist. It is a very tiring and exhausting process to go through.
The bad thing about this ride, is there is no time limit on when you may say Truth or Dare? Mother may I get off this ride? Your heart beats heavier and faster. Your thoughts can become jumbled. Bigger tears fall and you dig deep for signs of hope or thoughts of let’s get this over, okay? let me off this ride.
My heart goes out to her and anyone who is suffering through a long-term illness. Sometimes, although rare, lol, I am speechless for words on how to help. I believe the best I can do is pray for the best outcome for everyone involved, keep letting them know they are in my thoughts, and keep telling them I love them.
I love you, my friend, Julie. I pray for calm, peace, building memories, and anything else than can be found in this weekend. Hugs to you.
Perhaps you also would like to stop by and give her an emotional hug. If you feel like you want to; follow this link and say hello.