I often say to professionals I wish you had known Rog when he was Rog! So for you all this was only two years ago pre proper diagnosis and just before our trip to Aus and NZ , the speed of detiration is frightening. Our lovely girl is with us .
Julie x
Wow what a handsome family! Is this a recent pic?
Hi
Only two years ago, although we knew Rog was not well final diagnosis came six months later x
I have pictures of B with his family on his dresser drawer. One is a couple years before dx. He's happily standing with his dad. There's one from last March; such a change......and If I took one today there would be still yet another change...His face seems drained It's really just now these last few months he has gained the (full?) PSP mask....I think he's mad or wants to say something important....
Hope all is well despite any downturns.
AVB
So pleased you were able to make such a long trip. What lovely memories you must have! What parts of NZ did you visit?
Lovely photo by the way!
Hugs, Jen xx
Hi
We were very lucky as we decided to pick up an escorted trip so although busy busy saw Christchurch, Auckland, Milford sound, frank Joseph glacier, rotoruria, glow worms, Thompson mountains Tamsin sea loved the people and the country. Have you guys been? X
Great, but hope your trip was not in that order! I live in Hamilton, not far from Auckland and within easy distance of Waitomo Caves glowworms. Went to Rotorua recently and go to see my sister in law in Christchurch in January. She is out from Huddersfield. Was at Milford Sound in February after walking the Milford Track in a cloudburst!! Hope you had a lovely time and good weather! Jen
Such a wonderful picture! Your girl is truly lovely.
What a beautiful family picture!
Such a good picture and oh so similar experience. I have pictures of M on a Digital photo frame which shows the PSP effect over the last 8 years (from 3 before diagnosis) but I can now see how she began to be affected. It is great means to remind me of the good times and that she was not always like she is now which I sometimes forget due to the day to day grind of PSP on the carer as well as on my loved one.
Nice picture best wishes Tim
Beautiful photo Julie! Thank you for sharing! I agree, to look at my Dad now you wouldn't have believed this is the same man if I think back 3 years ago! Psp seems to come with a vengeance and bite you right on the arse when your not looking and goes at a speed we cannot keep up with! Pure madness x
Oh my, it goes so quickly in a flash. I say the same thing. Charles was so much fun. He still is.
Love the photo, treasure it.
Cuttercat
I have one of those frames that looks like lots of frames stuck together, with pics of him or us together before PSP, it helps me remember the person he used to be, before PS******P, its on the wall in the hall way, so look at it frequently
I know we all change and age, but PSP changes the sufferer beyond recognition
Love Debbie xx
We too had a pre dignosis safari trip to Tanzania and then to Zanzibar. Ben definitely wasn't himself and had balance issues. One day we were paddling amongst the low tide coral watching the fish and he fell right onto the numerous sea urchins and when I pulled him up he was like a pin cushion. Spent a couple of hours pulling the spikes out and luckily no infection set in. I feel guilty cos I sort of pushed him to do things that he wasn't really up to. In hindsight should just have let him relax but he does recall the trip with fond memories. Glad I can hold onto the memories of happier times before this stupid, horrible disease took its grip and continues to tighten, taking all future dreams and plans away.
Love Kate xx
Hi Kate, if you hadn't of pushed Ben to keep going during this time, he would have given up and the wheelchair and all the other horrors of PSP, would have been with you, a lot sooner!
S use to rock climb, up until a few months before diagnosis. Probably was a huge part, in his first marriage break up, certainly caused a few problems in ours. Now, I get down on my knees, everyday to count our blessings, his muscles are still very strong, which in helping keeping him, weight bearing and able to do transfers, reasonably well.
So stop the guilty feelings and give yourself a very large pat on the back, for your hindsight.
Lots of love
Heady
I think its really important to continue as normal as long as possible. I help Chris as he needs it but leave him as much as I can. I make him stagger about with me to keep his muscles strong. He would definately be bed bound by now. We can't stop the disease but we can slow it down.
We went to Costa Rica just after he was diagnosed and he was wobbly but it was important for him to be normal. Risky but worth it.
And the memories !!!!
Love, Jean xx
What a lovely family picture. Life is so hard sometimes. Your daughter is smart. It is OK to cry. I keep reminding my self that Jesus came to comfort the down trodden and heal the brokenhearted. Oh Holy Night. May the peace of the season be with you and yours. Hugs
