jmgoyder

wings and things

Parkinson’s disease and (un)predictability

on September 19, 2013

Unpredictability

There are many things about Parkinson’s Disease (or Parkinsonism as Anthony’s condition is described) that are unpredictable, especially when, in advanced stages, Dementia begins to insinuate itself into the situation. For example, the other night I rang Ants at the usual time of 7pm to say goodnight and he was lucid and loving and asked when I would be in the following day, then last night a nurse rang me and put Ants on the phone and he was terribly confused and didn’t know where he was. And I have heard, from him and from nurses, that at bed time he can become aggressive. Sometimes, when I am unable to get through to him (he is finding the phone increasingly difficult to operate), I’m actually strangely relieved, but mostly I need to say goodnight just to make sure he is okay and to tell him I love him, and hear him say the same. Whenever he is distressed, I find it nearly unbearable as he is a half hour’s drive away, so I can’t just pop in.

Predictability

Anthony takes a lot of medication but the two times of day I notice the urgency of timing are 11am and 4pm. For example this afternoon, I picked him up from the nursing lodge after lunch so that he could accompany me on a few errands. I hate doing this boring stuff by myself and he loves helping me even though he has to sit in the car while I jump in and out at shops, the bank, butcher, post office etc. Now, even though today I was given the 4pm tablet in case we were still out and about, by 3.30pm I could see I would need to save a couple of the errands for the next day or it would be impossible to get Ants from the car into his room. Why? Because he freezes. ‘Freezing’ is a PD term for when the person’s body freezes into stillness, making it nearly impossible to walk, talk etc. Almost without exception, this begins to happen to Anthony at 3.30 so that by the time he has his meds at 4pm he is frozen, but by 4.30 he is again able to move.

The unpredictable stuff makes planning very difficult but the predictable stuff allows me to time visits and outings. It is such a complicated disease.


32 responses to “Parkinson’s disease and (un)predictability

  1. You are such a blessing in my life. Thank you.

    You inspire me through your courage, unwavering love and compassion.

  2. How frustrating this must be for Anthony. It is good that you are able to take him out awhile, but like Cinderella — you have deadlines you can’t miss or he will freeze. I wish it could be easier for you both.

    • jmgoyder says:

      It is terribly frustrating for Anthony because I can bring him home at, say, 1pm and, using his walker, he can walk around the farm a bit and in and out of the house and to the toilet with little help and during this hour or so he feels like he is macho again, and then it all falls apart.

  3. I so love your devotion to him.

  4. niasunset says:

    you are amazing dear Julie, Thanks and Love, nia

  5. bill says:

    Julie, You have found the ways necessary to manage the disease, and keep your wits for the most part. That is a very clear victory. And you and Ants get to share the love. — Take care, Bill

  6. It’s an awful disease. Hang in there.

  7. Terry says:

    I absolutely hate the suffering you and he have to go through. It isn’t fair, I swear it isn’t

  8. bulldog says:

    This is so distressing to read of Ants hardships… but at least he has a wife who understands the disease and is there for him… you are a very brave woman to handle this as well as you do… you remain in my prayers…

  9. Bless you! Your plate is so full.

  10. camsgranny says:

    I used to refer to the hours as the “twilight zone” simply because they used to happen at certain times, when the meds no longer would affect, but now these days, it is always the “twilight zone”. My heart feels for you….

  11. ksbeth says:

    this must be so hard – hugs )

  12. I know this is hard for you, stay strong. (((hugs))))

  13. I think you are amazing for just being willing to still take him out with you, as I have heard of people who when their love ones get like that decide it is all to hard and just leave them in the nursing home.

  14. this is obviously a difficult situation for the three of you but i don’t think anyone could handle it better than you are. you inspire me with your devotion and kindness. not to say there isn’t a bad day on occasion but that is life. thank you for sharing not only the good times but the bad. you see i may not freeze but there are times i really cannot function. those times he is on his own and much like you he takes me along for the ride from time to time. we too make sure our last words are loving and kind. if only i could give you a big warm hug and tell you face to face how truly amazing you are….

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