Dropped eyelid

[Pooches]

Yesterday my FIL rang to ask me to pop round as his eyelid had dropped. I got round and bless him he said " what do you think?" I could see it had dropped. He said his whole face felt uncomfortable and I could see his muscles twitching in his face more than normal. He also said he felt very unsteady on his feet and clearly was more wobbly that normal. I think this is the first physical change I have seen in the last couple of weeks since his diagnosis. I have been reading the forum since joining and feel very lucky that at the moment that he still has so much independence and ability. But I can't help worrying about the future and what lies ahead for us as a family and for him. I know for sure he and I have become a little team and our relationship has become closer. I guess the condition takes so much away what I can be thankful for that as a human it has made me love harder. Maybe even made me a better person.

[Motts]

Good Afternoon Pooches

Before my mom had been diagnosed with PSP. . . we were eating at her favorite coffee place when all of a sudden one eye lid closed . . . she continued eating like nothing had happened. I hate to admit it but at the time I thought she was joking around. Turns out it had been happening to her for awhile and she did not think a thing about it.

It is good that you two are working as a team. There are many stages of PSP and sometimes it is difficult to recognize a new one. This site is a wonderful place to search for information and emotional support. Sending YOU HUGS - Granni B

[Pooches in reply to Motts]

Thank you for your reply. Just got back from a visit. He's pretty upbeat. But has today had a realization that riding his bike which he had continued to do and done all of his life daily is now be oming frightening. I have to admit when we told our neurologist at our hospital visit he physically recoiled. The thing is in some ways he found riding his bike easier than walking. Think a few things have changed for the worst this week. He walked me to the car I could see his balance was totally out far more than normal. Gosh it hurts but I am cherishing every moment. X Thank you for the hugs. Xx

[Kevin_1 in reply to Pooches]

Oh Pooches

It's so heart breaking to see our loved ones go down the hill as they do.

It's not just about balance. It's also about limited peripheral vision and slowed reaction time. I know you know...

Reaching out and saying it's so tough for you both.

Warmly

Kevin

[Pooches in reply to Kevin_1]

Thing is I don't know. It's all so new to me I'm reading as much as I can as it's just my way. I'm a need to know person. I have to question and openly talk it's I deal with all of life's trials. Sometimes the answers are unkind but I always feel netter knowing. Thank you for reaching out. I feel you and this forum will become my friend and life line. X

[Kevin_1 in reply to Pooches]

Hi

Yes, getting informed is so the way to go.

The truth can seem unkind, but you know that story.

We all struggle so much to do the best we can for our loved ones.

I never seem to know, or do enough to help my lovely.

And, I never seem to be good enough. No matter how much I humanly try.

We learn and we try to find the best thing to do. So often we are faced with a new problem we did not expect.

This forum is my lifeline too. No matter how much I think I know and no matter how much wisdom I think I have, there are always folks here to guide and inform me a little better.

It's a tough journey, together it is a little easier.

Welcome and share with us.

Warmly

Kevin

[JCRy in reply to Pooches]

They certainly are that!

My husband and I are at the beginning of the journey, too. There is so much strength to be gained here.

Thinking of you.

Love

Juliet

[wear1947 in reply to JCRy]

Hi Pooches, wellcome to the club!

I have been on this journey with my sister for 14 years and I always feel like a beginner. There is always some new problem and once I solved it, another problem apppears. For instance, I modified the house again and again but a new fall back, a problem of urinary incontinence, drooping of the eyelids, the visit to the GP, The paperwork to obtain Botox...etc. Giving her encouragement, proposing readings, music. Suggesting that caregivers read books to her. It is a heavy task. With the pass time, you can feel tired and culprit for feel tired.

Try to stay connected with the social environment, althought some friends can not stand our complains. But, when you feel that the demand exceeds you, call a close friend and have a coffee. Write to this community, which always gives you courage and ideas.

Then, restart the job dear. No one will do it for you. Thats all folks.

Hugs

[Pooches in reply to wear1947]

Thank you for your reply. I feel very well supported here. I'm a glass half full kind of thinker so even on the darker days I will find light and laughter. It's a happy medicine and a good way to live. It's never faoled me so far. We are dealt these blows that we cannot control but how we react is totally up to us. I choose to live and laugh. Hopefully I will also become someone who can help others to see the lighter side during their hard days. After all we are only here once. Xx

[wear1947 in reply to Pooches]

thank for your answer

Hugs

[wear1947 in reply to Pooches]

I am very sorry if my publication seems negative. My sister have a fall daily and I do not have the financial capacity to pay a person to be by her side following every movement. She would not like also to have such a follow up. It is not time for a nursing home while she is still completely mental active.

I try to be in the mood of the glass half filled and NOT half empty but I feel quite dissapointed from time to time.

Thanks for your answer again.

Hugs

Elena F.

[Motts in reply to wear1947]

Good Morning Elena - Your post did not sound negative at all - just realistic.

Seems we each adjust to our circumstances differently depending on the day and the amount of stress we are muddling through.

I have been known to bake cookies in times of major stress. It is not a solution but the house smells yummy. Sending YOU and YOUR SIS HUGS - Granni B

[wear1947 in reply to Motts]

Thank you very much for your answer. Actually, writjng of our fillings helps a lot.

Big Hugs

Elena F.

[Motts in reply to wear1947]

That is so true Elena. I believe it helps us get our thoughts together when we are scattered . . . going in too many places at once (either physically or mentally). Both are a regular part of my daily routine - I am going to go bake some cookies now. Take Care - Granni B

[Pooches in reply to wear1947]

Sorry if I came across badly i didn't mean to. Thank you for you realistic view of this condition. I am just at the begining with a long road ahead with my FIL so I'm optimistic and hopeful. So sorry if I made you feel in anyway bad. It was not my intention. I really appreciate and value your views and support.

Sending dig hugs back. Xx

[wear1947 in reply to Pooches]

If you are at the beginning of the struggle for a patient with PSP to have a life as dignified as possible, you must be optimistic. You should also be very optimistic because the research on Tau protein missfolding advances quickly and the early diagnoses too.

In addition to the pills, you have to make a plan of physical activity, and a close collaboration with a good physiotherapist.

Not forget to make cookies as Granny recomends

Enjoy this defy life puts us on and good luck folks!

A kiss

[Motts in reply to Pooches]

Good Morning Pooches - My mom had PSP and it is a long rocky road. It is good to laugh and make the best of each day.

Sending you my best as you do your best - REMEMBER TO TAKE CARE OF YOURSELF TOO !!!

That is my most important bit of information to share. Take Care - Granni B

[Nanny857]

Hi Pooches, my husband W has PSP and like your FIL W's left eyelid often closes on its own and it's movement is slower than the right eyelid. It's terrible what these diseases do to our loved ones, but as others have said, this forum is a minefield of information, expertise and great support that helps us along the way. I know I would be totally lost without it.

Best wishes, Nanny857xx

[Pooches in reply to Nanny857]

Thank you. Yes I'm finding a great place to work things out and learn more. Everyone here are lovely and welcoming considering their personal circumstances making time to be supportive to others really shows how super they are.

[Dickenson2]

Just remember everyone seems not to have the same symptoms and progresses at a different rate. Do make sure you make the best of every day and do not plan too far in advance. You just have to adjust to life differently. We used to walk a lot but as time progressed had to use the bus or the car. Now we are down to occasional trips in the car withproblems getting in and out. Xx