Don't want to join this group! (Ranting about diagnosis)

[LostinHeadSpace]

We saw the neuro today, at the end of a four-week levodopa trial to see if my husband has regular Parkinson's vs CBD or other atypical parkinsonism, and I was really hopeful because I could improvements in his facial expression and for the last couple days his handwriting was better. But the neuro said his response was minimal, nothing like the improvement you'd see with regular Parkinson's. The movement tests of the hands were unimproved (his right hand is very affected).

He's going to try it for four more weeks, raising the dose one more time to be sure. But he said (when asked) that it was progressing quickly and atypically. The previous neuro thought CBD, before we saw this movement specialist.

I'm so crushed to be probably facing what you all have been facing for so long. I can't even wrap my mind around it.

[doglington]

So sorry. It is a crushing diagnosis.

However it is good to find a group of people who know how it is. We have all been where you are.

When you are ready join in and you will be supported.

love from Jean x

[Zeberdee]

Very sad to read your post and not easy to accept any diagnosis that is made. Unfortunately many of us have been at the stage you are at but there is lots of help and wise words on this site. When you want to rant and rave about the injustice of it all ..... this site awaits. Jxx

[Kevin_1]

Hi Lost

I'm sorry to hear your heart sink news.

Y'know PSP and CBD are horrid, but they are manageable.

Progressing quickly might not mean so much... I have a snail in my garden which is super fast - for a snail.

We're all here for you.

Warmly

Kevin

[LostinHeadSpace]

Thank you so much for your kind responses. It really is a stunning thing to face. You all are so lovely and supportive.

My next focus is going to be the most fun possible summer we can do, while my husband can enjoy everything. We're looking at taking the kids to France this summer--time to pack the bucket list!

[Nanny857 in reply to LostinHeadSpace]

Hi there, sorry to see your post. However you have got your priorities right. Go out there and have as much fun and adventures as you both can possibly have. Make lots of happy memories to share and hold on to. Lots of love, Nanny857xx

[doglington in reply to LostinHeadSpace]

Good. I always advise people to make good memories.

We went on a wonderful holiday to Costa Rica. You can't let PSP spoil everything.

Let us know how it goes.

love from Jean xx

[Tippyleaf]

So sorry you have had to join us but this is the site to join if you have too!! You will find masses of helpful advice/ guidance you just have to ask.

Everyone’s CBD/PSP journey is different so difficult to compare. Get all the help you can - most of us try to cope solo for too long but the sooner you can enroll the services of physio, OT and SALT the better for you both.

Now is the time to make new memories get out and about and enjoy everything you can still do together

Love Tippy

[Aprilfool20 in reply to Tippyleaf]

Hi Tippyleaf

Diagnosed with CBD now changed to Parkinsonism. What is SALT? Have been seeing physio once a month for last four months, doesn’t feel I need OT help as yet. Have found massage once a week helps with left arm rigidity but pay privately for this.

You are so right about enjoying life while you can. We are off to Corfu in a couple of weeks to hopefully soak up some sun!

Best Jayne

[Tippyleaf in reply to Aprilfool20]

Enjoy the sunshine in Corfu - that sounds lovely

SALT is Speech and Language Therapy, you may not need this, but at the first sign of a change in speech good to get help. My Husband has a weekly massage and it really helps him with stiffness. He started at a physio gym as soon he was diagnosed with PSP (2013) and he continues to use the gym twice per week I think it has really helped his balance and stamina. He also does Tai Chi and Ch Qing exercises. I think any exercise is good for you.

Have a wonderful holiday

Love Tippy

[Aprilfool20 in reply to Tippyleaf]

Thanks Tippy. Can’t get to a gym -on my own all day as hubby still in full time work but do try to get out for a walk but legs quite wobbly. Try to keep busy round the house - but so difficult to get motivated.

Speech is sometimes croaky so will discuss this with neurology nurse at the end of May . Are you in the UK? I am in Norfolk ,England and things are very strapped as our elderly population here increases. I have just turned 60 and am dreading what’s ahead.

Best wishes

Jayne

[LostinHeadSpace in reply to Tippyleaf]

I found a Parkinson's gym that's not terribly far. . he seemed interested when we checked it out, but he announced today he wasn't ready.

[Martha_k_uk]

I am so sorry to hear this, you are right- crushing is the perfect adjective, I use the word heartbreaking all too often but I feel that nothing else quite measures up.

You will get through this, you will face what is to come, and you will make some good memories along the way.

Wishing you lots of love and luck x

[raincitygirl]

Dear Lost,

Thinking of you, and will keep my fingers crossed for the next trial! Keep us posted.

Hugs XXX

Anne G.

[LostinHeadSpace]

Thanks much for your encouragement! It's so overwhelming to know what to think, or plan, or feel.

[Artteach10]

This is not a sight any of us would choose but I was so welcomed just a short time ago and spend time reading posts just to learn and process this terrible disease. Thinking of you and sending prayers. Nancy

[Tttp]

My brother is in his 7th year and symptoms 2 years prior, not everyone has the same symptoms some more than others, there is one thing that I wish I would have done and did not do, RECORD their voice. Nettie California

[raincitygirl in reply to Tttp]

Nettie how true!! We never had home movies and now the outgoing message on our landline is the only example I have. Oh, and his cellphone..which I have to deactivate..maybe I can find a way to store that recording...hmmmm...