When it’s more than HD

It started eight days ago. I woke up Monday morning, got out of bed, and couldn’t walk well at all. 

 Before that, with HD, I had only had balance issues but was walking fine. But last Monday I didn’t stagger or stumble or anything I’d ever envisioned I would do or had seen my relatives do. 

I shuffled. A Parkinson- like shuffle. Hard to put one foot in front of the other. Small steps. Not covering much ground. 

Two neurologists have told me that it can’t be HD. It came on too suddenly and has the wrong movement MO. I should investigate other areas. 

And I knew nothing about other areas. 

Over the past week, I have learned about Drug induced parkinson symptoms.  I have learned about Lewy bodies, just enough to scare me. 

Every day since it started, it has gotten worse. Today my doctor ordered me a wheelchair. By tonight my husband had to line one up to borrow so he could push me around if we had to go out before insurance approved my order. 

And by the time he had made that arrangement, my walking had deteriorated to the point that it was just alternating sets of toes clawing. Nothing else happens. He called to see if he could borrow, instead, a chair I could push myself around the house in. 

I had to use a makeshift bedpan tonight. 

My husband is mentally rearranging furniture to make the house wheelchair accessible. We are both silently hoping we can get a chair that is narrow enough to roll through the old bathroom door. 

We are hoping for the best but planning for the worst. I am being taken off meds that could cause effects like these and my MRI will be of my brain instead of my spine. 

I don’t know if, tomorrow, I will be able to walk or if I have already walked my last step. 

The one HD consolation prize, the gradual progression, has been ripped from me. 

And whatever this is, I don’t know if it is going to stop now that it has taken my feet and my legs. Is it going to work its way up my body and immobilize it all?

Is it going to have its own accompanying horror show of symptoms for me to dread, or will it take me out so fast I won’t have time to go there?

My husband and I are on our own in uncharted territory. I have something that is undiagnosed, swiftly progressing and, so far, has no known treatment. 

As well as HD. 

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19 thoughts on “When it’s more than HD

  1. You have inspired me more than you could know. Please, have them text for Guillian-Barr syndrome. It’s symptoms are exactly as described and you must go to the ER now, the symptoms progress rapidly and can paralyze your diaphragm. This is not something that can wait, please go now , the world still needs you

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  2. Sarah sarah sis sis
    Don’t have words for this ! It’s too fast! It has to be something else! I’ll stay in touch! Your always in my thoughts … sister sister DK

    Liked by 1 person

  3. Devastating! Sarah, I’ve been away from blog reading this week, and missed the post. I just put my first piece out in ages, and tagged you–– as I’ve been planning to write about you. Now, I’m shaken and so worried. Know that you are in my thoughts, and I’m sending all good thoughts and hopes for change.

    I agree with Jordan, could this be tick related? I’ve seen some pretty horrible things with ticks. However, my aunt lost her ability to walk very quickly, over a very short period of time. As we both know, HD is indeed a horrible and deeply unfair and insidious disease. Sending you love, friend. xox

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    1. Dawn. It is interesting to hear about your aunt. I am pretty sure they checked me at Duke for tick borne diseases and I haven’t been bitten anyway. I look forward to reading your post and I appreciate the good vibes. Love.

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    1. Thanks for bringing that up. That was one of the first issues we addressed. We have backed off some levels and no improvement. The rest they say are not metabolized by fat cells. I appreciate your kindness and concern. xxxxx

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  4. Jesus, you control all the parts of my body, and you know when they’re not working at their best. Sickness leaves me stressed and steals time from all the things I want to be doing. I’m honest, Lord. I don’t like to be sick. But times like this also make me rest in you, so I thank you for this chance simply to wait on you.
    I come to you today asking for your touch, Lord. Help me to be patient and allow you to do your work. If doctors are involved, give them wisdom, and thank you for providing the help I need, however you choose to provide. Whether this is a test, or simply a time to trust, I want my response to honor you.
    As my Good Shepherd, I know you will lead me beside quiet places and restore my soul and body. I trust you and want to follow your leading. Help me to welcome this time not as an interruption in my carefully planned schedule, but as an opportunity to draw strength and nourishment for the journey ahead. You are my healer and my Great Physician. I look to you and give thanks for the promises in your Word that assure me of your presence and your help.
    Teach me what you want me to learn during these unpleasant times, Lord. Help me not to take out my discomfort on those around me, and show me how to be a good patient while I’m recovering. In these days of sickness, Lord, I’m trusting you and asking you to make me well. And when you’ve restored my health, give me wisdom so I can treat my body as the temple of your Spirit. I’m eager to get back on my feet serving you, but I realize that even in sickness, I can still draw near to you.

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      1. Glad you love it Sarah. 🙂 I was in the food court and was reading my Bible Study notes. One of the references talks about healing sickness with prayers. i googled and found this beautiful prayer. I have given to Bruce and you. Can’t recall if i have shared on my timeline. 🙂 Guess what? I do believe in miracles! I believe in prayers. Love you too Sarah! 🙂

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