CBD confirmation

[Upturned]

Not a good day yesterday. My CBD has been confirmed. I feel a bit confused. But that's how it is from now on I guess.

[Dadshelper]

Now is the time to start getting legal affairs in order and take any trips you have been planning. This isn't a disease that "waits for tomorrow".

Ron

[raincitygirl]

Well that just sucks 😟

So - since you can’t change this reality, what are you planning to do?

Big hugs to you Upturned, from an understanding community ❤️❤️❤️

Anne G.

[easterncedar]

Sorry, upturned. Even though we had an initial psp diagnosis, the day the neurologist confirmed it we were in shock. Hang in there. We are here and we care. Sarah

[wear1947]

Be brave! I agree with Dadshelper, it's time to arrange all the legal terms

Besides, help the people is taking care, family and friends. Give a look to your home. Take off all these stuff you have not used the last 3 years. Donate the books. Try to be basic. Finally enjoy every day as it would be the last. Love everything and everyone with intensity. Sorry for my English

Warm regards

[Birdlover415]

Good morning, Upturned. I have CBD also. When I first started experiencing symptoms, I ignored them for a long time. When I finally went to the doctor, I really could not accept the “it’s neurological” diagnosis. Yet, as soon as CBD was mentioned, and I read the descriptions online, I knew that it described my symptoms perfectly. It was also confirmed (as much as possible) thru a MRI.

It’s very hard to accept that really nothing can be done. I thought doctors could cure everything!!

At first, when my symptoms were more mild, I went to all kinds of therapy plus worked out on my own both with and without a trainer. Slowly, we changed our house-putting up grab bars, re-doing the shower and eventually building a ramp. Starting this January, we have had a caregiver come in the morning so my husband can have a little respite.

I encourage you to do what you can to exercise and to get your affairs in order. And read the posts in this forum, everyone is so very helpful.

[SewBears in reply to Birdlover415]

Birdlover,

You are to be admired for your strength and for sharing your story with us.

Thank you from the bottom of my heart!

I am a caregiver for my husband and I’ve retrofitted our house slowly, like you. I have yet to find someone who can step in so that I can have a respite, but I am working on that.

Keep on keeping on!

❤️ I SewBears

[Birdlover415 in reply to SewBears]

Thank you so much for your kind words. When I first realized that I did not have an illness that could be “fixed”, I told my husband “I have not yet begun to fight” ( quoting John Paul Jones). So, we have luckily had the resources to make the changes we needed to do.

We do other things also to make life easier. I grocery shop online using “Instacart”, we have been using a meal preparation and delivery service called “Freshly” for 3 dinners a week for both of us. We have a cleaning lady come once a week for the heavy cleaning like bathrooms and washing floors. Plus, we have a dog walker come twice a week just in case we ever really, really need someone to care for our dog. Plus, now we use a mobile dog groomer. It’s amazing the amount of services that you can have come to you!

Your posts are always so positive and helpful, thank you for being there.

[SewBears]

Hi Upturned,

No wonder you feel confused about a diagnosis of CBD. I’m so sorry that you have it.

We were confused when the doctor thought that my husband had CBD too. About the only thing that made any sense at the time was that we finally had a name that married up with most of his symptoms. We went back to the doctor initially every 4 months and each time we went to see him, the doctor kind of scratched his head and contradicted his initial diagnosis. Today we still aren’t sure but we know that it’s definitely in the Parkinsonism family.

We live in the US. Where are you located?

Sending hugs

Xoxo ❤️ I SewBears