Our days are changing, and can be quite overwhelming, yet I treasure the simple things that I once took for granted. I have decided that this horrific disease, that has seemed to take center stage in our lives, is not going to prohibit me from collecting moments along the way.
This picture has captivated me, and I live for the moments you cant put into words. I am always ready to snap the picture --- and this one quickly has become a favorite. Every picture has a story.
Linda is expressing her love for my sweet Momma, thanking her for a birthday gift that my Mom gave her ... it was so simple, yet so perfect. What moved Linda so much, is that my Mom took the time to try and write a message in a birthday card. My mom had absolutely beautiful handwriting, and it bothers her now that it isn't what it used to be.
My moms right handed and the dystonia has set-in, and her fingers are curled ... most of the time, I have to open her hand as it clenches closed. The last week or two, she has very little use of her hand ---- it seems to be a little more loss every day for her.
Expressing love for my mother because I will never have another.
Thank you to all of you on this forum that support, guide, advise, and listen ...
xo
Kim
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bazooka111
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Have you tried a stress ball to exercise the hand? At the beginning of PSP, Steve had a very bad left hand, during one fall he broken his right wrist, so had to use his left hand, it improved it no end and it didn’t start to revert back until very near the end, ie three years afterwards. I accept he had only just got diagnosed and was still relatively fit then. Certainly regular massage will help make her hand feel better, even if it doesn’t do anything for the dystonia.
Crazy they you mention a stress ball ... someone just gifted us a few, and suggested this idea! Massaging her hand is a great idea too. Her hand curls in and can be extremely hard to open ... I’ve read quite a bit on this lately, and someone suggested having a splint made to help keep it from closing permanently??? Ever hear of that?
Stress balls are a good idea. Mom liked the softer ones. Several years ago my daughter in law suggested a splint to help with my Crazy Hand & l tried it a few times. At that time it was not helpful but l might try it again this year. Ask mom's medical folks their opinions. Crazy Hand is not a medical term... my right hand is actually an Alien Limb ( Arm or Hand). But since l did not know the correct medical words l loving called her Crazy Hand & l shared her misadventures with my grandchildren in a playful loving way. Staying positive is difficult but oh so important. Sending Hugs... Granni B
Well Mottsie - -Mom has her "crazy hand" -- we actually laugh sometimes, because her pointer finger on her right hand has a mind of its own. We laugh because what if it was her middle finger -- when I say that to her -- she laughs so hard, saying, "Oh My" We have to laugh or we will cry, thats for sure. As I type this, she is hold her stress ball. I had to cut her beautiful nails back due them embedding into her palm. Hugs back to you!
Try warm water first to relax the hand, then try and open it. I have seen splints, also a wad of cloth, just to keep the hand from totally curling in and keep the palm dry. Like everything with this disease Kim, keep the hand moving.
Excellent idea ... and yes I have to keep the palm dry. I have discovered a wonderful massage therapist (referral from a friend), and she is now going to come to our home first Tuesday of every month for a massage (for me too) ... Im so looking forward to that. XX Kim
My sister's hands both curl up tightly and in the LTC facility they use a wash cloth rolled up and put it in her hands...this seems to work quite well along with massaging them a few times a day.....Good luck!..Liz
Love that photo, Kim. You always manage to capture such beautiful moments amidst the never ending challenges and the warrior in you never gives up. You and your mom have a pretty special friend in Linda. Friends like her can be hard to find when the going gets tough - she’s a real treasure and may I say, so are you.
Hi Hils!!! I hope you’re well! We cherish Linda, she has been by our side every step of the way! A true gift. I absolutely loved this moment —- Mom was focused on wishing Linda a birthday, and the affectionate response was priceless. Xoxox
Beautiful photo which captured a beautiful moment - something to treasure. Keep making those beautiful memories and know that we are all thinking of you both and now Linda too. I love your posts they are so uplifting
Hi Sarah! Thank you for the kinds words and positive energy. I feel incredibly blessed to be surrounded by some amazing humans -- my chosen family, I truly don't know what I would do without friends. Isn't it something -- you would think it would be close family members ... for me it is the exact opposite. I think my family is trying to push it under the rug, and act like its not happening. Linda is our angel on earth, and my Momma just loves her. (Crazy trivia -- Linda is actually one of my former high school teachers! She and I reconnected about 12 years ago, and have become the best of friends) I marvel how lives intersect over time, in this case it has come full circle. Crazy!
I lost my father three years ago after battling cancer for 18 months. I was my Mom's support, but she taught me first hand how to be a caretaker. Bless her heart -- she cared for my father, pushing her symptoms to the back burner. In fact, the last two weeks of my fathers life (we had in-home hospice) she had her first fall backwards right in front of my Dad laying in his hospital bed. He had told me a few weeks earlier while hospitalized, "something is going on with your Mom, please promise me that you will take care of her" .... I didn't need to make that promise because I love her beyond words, but he had already started noticing something wasn't right.
So ... after experiencing loss of my sweet Daddio, Im holding on to this precious life as long as I possibly can, and adding some joy as best I can ... I love her so much, and Im currently experiencing anticipated grief -- its overwhelming. Loving my Momma as best I can.
My heart is shredding a little every single day. Some days are just wonderful, but then we are challenged with another break away piece of her health. I abhor this disease and feel incredibly helpless most of the time ---- I really cannot believe that Mother is on this journey.
My mums care used to put a splint on her hand when it started to curl in. But it was more her wrist. She wore it for a few hours a day, mostly in the mornings. She didn’t need it after about 9 months as it seemed to really help.
Beautiful photo. Even more poignant given how until lockdown we would take embracing our family and friends for granted. I'm so pleased for you all that you can.
I know what you mean about the handwriting Kim, and how sad it is seeing the struggle for Mum just to write the simplest of birthday cards (testament to Royal Mail though for deciphering some difficult envelopes over the years). It was Mum's handwriting concerns a couple of years ago that was one of the triggers with me that something wasn't right.
Same here - Moms handwriting was one of the first triggers for us as well, along with her shuffling walk - we went to a Parkinson’s specialist early on, and suggested that it wasn’t Parkinson’s or at least at that point (2015) she was presenting enough symptoms. Two years later .... bam CBD diagnosis.
I miss hugs. I miss embracing my loved ones. Fortunately, Miss Linda has been in quarantine with us the entire time - I don’t know what I would do without her ... she is such a caring soul for my Momma (and for me too) xx Kim
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Hugs back to you! 
