Have you been practicing that stunt long?

I’m holding out hope… that the B1 Thiamine protocol I have begun will reverse the recent trend of losing my balance. It seems I can’t do simple tasks like consolidating the garbage cans, if it requires me to lean forward a little. John pulled me back upright by my clothing, when I tried that stunt recently. And of course I can’t carry much of anything and hold onto the cane.

I didn’t tell him about hurting my ribs falling across the lid of the bedside commode, until he saw the bruise last night. I’m not sure what triggered today’s stunt. I was washing my hands and must have turned slightly to reach a towel, when I found myself falling sideways across the shower chair covered with towels and rolling toward the divide between the shower and shelves. I expect John will see bruising on my left heel, my right shin and both arms… But the ‘talent’ part of the stunt was I stopped myself before hitting the floor.

I’d like to say it doesn’t count as a fall, because I didn’t hit the floor… but I know better. Just like in yesteryear we would have teased about how long we’d practiced to perform a stunt, we now realize it is serious business. John will proof read what I typed here, before I post it. He will be concerned. I am also concerned for his health, but he seems to have done a better job of learning to slow down and think before proceeding with a task.

He is such a wonderful caring spouse. I am grateful that he has taken over kitchen duty preparing breakfast for us every day. I appreciate how he assists me in and out of the car; And after our scripture study and evening prayers he helps me onto the bed. He is forever helping untangle my glasses as I transition from reading with prisms and walking with the others. He has stretched with undaunted patience as I turned over the writing of notes in birthday cards to him, and coerced him to learn to use the debit card at the checkout and ATM.

I tell him he is a ‘professional whiner’, but really he just has the most humorous ways about him, There is never a hint of peevishness or self-pitying in his banter… even when I asked him to remove the tub and replace it with an infrared sauna. Did I mention?: the day I agreed to marry him was one of the luckiest for me. I adore him.

Every Victory Counts

 You may want to go online to Davis Phinney Foundation for Parkinson’s and request the free manual ‘Every Victory Counts’ It is excellent and will greatly benefit anyone reading it. It is 400 pages long.  from Mr. Phinney’s intro:
“This race, a no-holds-barred winner-take-all type of event, demands everything from me. Let down my guard, and it’ll knock me flat – but by refusing to give in, by exercising daily, by eating well and most especially, by maintaining a positive attitude – I find ways to win.”

I’ve been browsing through posts on MyParkinsonsTeam.. an on line support group and social network. I have cut and pasted a few of the comments regarding attitude and patience that I found insightful.

ATTITUDE

“Good morning. I truly believe the best thing to do with the memory loss problem is to lighten up. All my friends and family know what to expect from my pd, so they are very patient with me. If I forget a word, I just call it “thingamagic” and go on with the conversation. I am bilingual, so if I recall the word in the other language, I’ll use it. Even my grandkids, who love to sit and talk with me, when I forget their names and call them “little girl”, they just say their name and go on like nothing happened. I am not trying to make light of anyone’s condition, but remember, it’s half illness, half attitude. The more you stress, the harder it gets. Have a blessed day. “

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“I read a lot , and I volunteer doing a computer job in which I have to keep my brain running normal . If you don’t use it you’ll loose it.”

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“I sometimes loose words but probably as often as any other 63 yr. old. What frustrates me is when I’m told by family and friends “ I just told you about that” or “ You already told me that”. I have a fairly high IQ so the loss of my short term memory really irks me. “

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“I just say,”uh oh Parkinson moment” and people accept that if you treat it as “Oh Well..”

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‘The only other answer for caregivers whose spouse/patient is experiencing this is patience. There are days that I don’t know how many times in 1 day the thought runs through my brain “It’s the disease not him.” That is what you have to constantly remember.’

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“If you’re the person with the ‘memory fog’ then you don’t know what you’ve forgotten – that’s the scary part. I’m listening to Peter Gabriel ‘Don’t give up’ https://youtu.be/VjEq-r2agqc this gives me encouragement and a clue – learn a new song, learn all the words, sing along – learning something new utilizes the brain’s inherent abilities, and will sustain memory function … learn a new sequence of numbers (someones phone number! “