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.
http://www.movementdisorders.org/MDS/About/Movement-Disorder-Overviews/Ataxia.htm
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.
Who I am 
It’s not as bad as you were afraid it might be, but not as good as you were hoping. That part’s understandable. I’ll take a wheelchair over having my brain intact, and trust God to help me figure out the rest of the coping mechanisms. I know you’re brave like that, too.
Check with the department of Aging in your state, and see how old you have to be to qualify for any benefits, like a housekeeper for a few hours a week, or even someone to help you get to the store and the doctor’s office. I had a friend who was able to stay in her home for the longest time using those services, and my own birth mother was able to stay in her low income housing apartment until she got seriously ill only a few months before she passed away. They don’t try to make other family members feel guilty about how they can’t help either. It may not be until you’re 65 that you are eligible, but if you need them right away at that age, you’ll know who to contact. It may also be that you’re eligible once you cross 60, so it’s worth checking into.
The best part about this program is that they will monitor what you’re eligible for, as far as help with the bills, different free outings in your area for seniors that you might enjoy going to, as well as free clinic days for simple screening stuff as well as free shots for pneumonia and flu. They also helped us with adult diapers for Ma, since she really couldn’t afford them and was trying to manage her bladder problems with just pads. Pride was a part of that, too, since the only time she “lost it” was when she coughed – but she had COPD and wouldn’t quit smoking, so – she coughed a lot and leaked a lot (shrug).
They helped her get some low cost dentures, too.
A few of these worries off your shoulders might help you find some easier rest, for sure.
We’re the same age, so I’m watchful of what works for me and my friends, before I offer ideas.
Bless ya!
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We do have a service here in my area. I will look into it. I will fight this all the way. I have a feeling that God is saying my caring for others is complete. Now I will rest and let him lead me to him
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My best wishes to you as you deal with this challenge. It’s not easy.
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Thanks so much my dear friend
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That is a better outcome than you thought, no MSA and no real Parkinsons. Still hard to deal with. He said the word Wheelchair, but for now celebrate life as it is and enjoy as much, I am sure for a long time without a wheelchair. Be positive and live Terry!
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You know me. I will fight until there’s nothing left to fight with. Wheelchair? Not for me
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That’s my girl! 🙂 (Still seriously, do take care of yourself and get help if needed!)
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Hope for the best, prepare for the worst. Thankfully it was not as bad as you thought it may have been. At least that is something.
Still not easy though. Nothing wrong with being in a wheelchair if it helps you get around some more. Keeps you more mobile.
Taking the photos is a way of saying “I win!” And they are good photos.
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As long as I can find days to smile about and still use my camera, I want to live. Hugs
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I can’t use a camera any more, it pulls on my back just to lift it. There is still things to smile about though. As long as there are friends to talk to.
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That breaks my heart. I know how much you love your camera. Is your neck arthritic?
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I have no words of wisdom, Terry. I’m just so sad for what you are dealing with. I do love your positive outlook and appreciation for the beauty in life. Your photos are gems. Keep writing, taking pictures and sharing your heart.
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Thanks and big hugs, my friend
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