CBD

[Northstar1]

Hello

My husband was diagnosed last year he us 55.

[honjen43]

Hello Northstar1 Welcome to the site. The best one ever for support, knowledge and help when the GP or specialist has little help or treatment he can suggest!

You can gather support around you if you let us know which area you are in. Don't give too much personal info! That can come later in private messaging.

I live in Hamilton, NZ. There are only a few of us here but we are gradually getting to know each other!

There is a good search facility and you can read all posts if you touch the emoji by the moniker and read our stories. Some have concluded, others ongoing, and many are by carers of their loved ones.

You have found a very supportive group!

Big hug

Jen xxx

[Northstar1 in reply to honjen43]

Thank you so much it's so difficult.....my husband does not know the prognosis but I do....

[honjen43 in reply to Northstar1]

Mine did not understand his diagnosis, just that he did not have Parkinson's and therefore did not need to take the drug that had so many horrid effects!

By the time I think he understood, it was well into the effects and his cognitive ability was compromised. He seemed more concerned in its early stages when he realised he could not do his maths calcs as easily as usual or complete tasks or concentrate as well. He was a lot slower filling in forms and writing - he was clever at hiding what he was unable to do, and became slow at doing anything I asked him to do.

So I often got cross, also not understanding as we did not discuss that phase!

Don't entirely despair! If you can manage him, suggest you discuss holidays together. At 55, he will find it increasingly difficult (even dangerous) to work. He may well need to be "persuaded" to leave/take leave/sick leave/retire/another avenue of excuse or reasoning! He won't want to consider himself incapable of work! Careful quiet handling by his boss or GP may help.

Suggest you begin to include yourself in his doctor visits.

It may be that he will want to know at some stage, so you need to have an answer that satisfies him and is not a 'label', such as 'disability'.

Suggest you have a quiet word with his doctor who may be able to explain what is happening in the moment without going into the prognosis. Even suggest he take sick leave.

I know it is hard! Good luck!

Hugs

Jen xxx

[Northstar1 in reply to honjen43]

Hello Jen that's his very helpful x thankyou

[Richard33 in reply to honjen43]

Jen

Like you I have not dwelled on the prognosis with Ruth (59 with CBD) - just on the immediate challenges. I am hoping that by the time she is getting nearer the end her cognitive ability will have lessened so hat she does not feel the full impact.

Richard x

[Northstar1 in reply to Richard33]

Thank you

[Meykat4 in reply to Northstar1]

My husband started having issues when he was 59. It took a year and a half before he was diagnosed with CBD. He went from a slight limp to not being able to do anything without help in the last 4 year's. He now has a peg tube because he was aspirating everything he was drinking. He's confined to a wheelchair and can't talk hardly at all anymore. It's a very difficult path. Make sure you take some time regularly for yourself because it Is very wearing on the caregiver. Feel free to ask me anything. Make sure you have someone to have someone you can talk freely with. My husband didn't want to talk about it either. Doesn't want to know anything. Good luck to you. Kathy

[Northstar1 in reply to Meykat4]

Thank you how old is he know please. Does he still live with you x

[Meykat4 in reply to Northstar1]

Francis is now 62 and he went into the nursing home after he got aspiration pneumonia in Oct.

[Northstar1 in reply to Meykat4]

Thank you I'm so sorry it just terrible. I can't believe this is happening. X

[Meykat4 in reply to Northstar1]

It is terrible. It's not fair. It's awful to watch your loved one get worse and there is nothing that can be done.

But, with the knowing of the finality comes the gift. Instead of thinking there is plenty of time to be together, and then being shocked when someone is taken from us, the regrets from not saying or doing things(which is also terrible) we know time is shorter to be together. We can love and share and do things together with our loved ones

Say the important things . Really share time together, cherish what you have now. Because tomorrow isn't promised to any of us. It's really hard to get to that place in your mind. Say the I love you's often. Do the trip you've always wanted to while it's physically possible. It's a sad process. Get as many special moments in as you can along the way. I'm very sorry your family has to go through this.

Anytime you want to talk, rant, question. Feel free. I totally understand. This site is very helpful because we all are going through very similar experiences. Take a deep breath. Get time for yourself. You can't help anyone if you're run down! Kathy

[Northstar1 in reply to Meykat4]

Thank you xx

Do you have children x

We have 1 son are 27

[Meykat4 in reply to Northstar1]

We got started a little late with children. We have 2 girls. 20year old and a 16 year old.

[Northstar1 in reply to Meykat4]

Thank you for your support xx

[Dadshelper]

Welcome to the site. Dad had CBD Dx Jan 2016. He seemed to have a lot of apathy towards his condition. Between the doctor and my layman explanation I know he understood what was happening. We made plans for what type treatment he wanted or didn't want, that way I knew his wishes.

Ron

[Northstar1 in reply to Dadshelper]

Thank you

[Beads0122]

Northstar,

I’m glad you found this forum. The friends here are caring and know how to comfort and give helpful information as we all deal with this terrible disease. This is helpful as many of us have never been caregivers before.

My wife was misdiagnosed with early onset Alzheimer’s initially, which was when she was about 53. She was the one who was concerned with symptoms that she noticed. It was not until she was 57, that she received the correct diagnosis of CBD after we saw a specialist because the progressive decline was not consistent with classic Alzheimer’s. Like your husband, this is too young.

I hope this site arms you with the knowledge provide care for your husband and comfort as you deal with the daily stresses,

Bobby

[doglington]

Welcome, Northstar1

Its a tough dx to hear anyway but especially at such a young age.

You will find incredible support and knowledge here. It felt like a lifebelt for me.

I would suggest that you , whilst making the plans for the inevitable decline, also live in the moment. Do the things you really want to do. It won't get easier and the memories you make will be so precious.

Take videos. Talk to each other so that you know how he feels about future issues.

My husband has died but I have good memories of fun and laughter, even from the bad times.

Ask anything you want. We become a second family.

love from Jean xx

[Christine47]

In case you are interested ...

Brain Support Network and Stanford University will be co-hosting

another free, one-hour webinar this month on progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. Treatment is possible for these three atypical parkinsonism disorders!

Join us and spread the word...

Treating PSP, MSA, and CBD - What can be done?

When: Wednesday, February 27, 2019, 3-4pm Pacific Time (US and Canada)

Speaker: Brent Bluett, DO, movement disorders specialist, Stanford

Movement Disorders Center

Register in advance for this webinar:

bit.ly/2Ru0e18

After registering, you will receive a confirmation email containing

information about joining the webinar. Save that email as it contains

an important link with the meeting ID embedded. You will receive

reminders.

If you can't make it on February 27th, we encourage you to register

for the webinar so that you will be alerted when the recording is

available online.

****************

Further details on the webinar topic:

Dr. Bluett will address these topics:

* What symptoms of PSP, MSA, and CBD are amenable to improvement?

* How can physical therapy, occupational therapy, exercise, and

assisted devices help?

* What about eye movement training?

* What about botox?

* What are some eating and drinking strategies?

* How can you ask your neurologist about these treatments?

There will be time for questions-and-answers with Dr. Bluett and the

webinar host, Sharon Reichardt Walker.

When you register, you'll have a chance to list some questions you

have regarding the topics.

****************

Further details on the speaker:

The speaker is Dr. Brent Bluett, a movement disorders specialist at

Stanford University. He is an expert on atypical parkinsonism

disorders. He is the director of the Stanford Center of Excellent for

Progressive Supranuclear Palsy. Dr. Bluett's research focuses on fall

prevention in all movement disorders. He received NIH grant funding

to explore freezing of gait in Parkinson's Disease, in order to better

understand the underlying pathophysiology.

****************

Further details on the webinar host:

The webinar will be hosted by Sharon Reichardt Walker, whose late

husband Den had progressive supranuclear palsy (PSP), confirmed

through brain donation. She is a longtime member of Brain Support

Network, a nonprofit focusing on the four atypical parkinsonism

disorders, including PSP, multiple system atrophy, corticobasal

degeneration, and Lewy body dementia. Sharon has spoken to support

groups and conferences about the importance of brain donation for

research and the challenges of being a PSP caregiver.

****************

Brain Support Network (BSN), the co-organizer, will be posting notes

from Dr. Bluett's presentation and the Q-and-A to its website,

brainsupportnetwork.org, within a few days of the webinar.

[Northstar1]

This is brilliant thankyou so much. I have registered x

[Northstar1]

Are you a carer ?

[Kaka1234]

Hi my husband has CBD he is 58 I'm 48, we are now in his 4th year and doing well, we still try and go out everyday if he feels he can., we take the days as they come but still very happy and in love.

I'm his full time carer I finished work 18 months ago to be with him.

[Northstar1 in reply to Kaka1234]

So he was 54 at diagnosis or symptom onset xx

[Kaka1234]

Yes it started when he couldn't shave one side of his face and we noticed changes in his personality, it took quite a while for the diagnosis as the GP first thought it could hv been a tumour.

[Northstar1]

How old was he then please?

David was 53 ish it difficult to pun point x Its been such a shock I keep crying on and off

[Kaka1234]

Yes he was 54 when it all started 56 on diagnosis.

[Kaka1234]

If you want to ask me any questions please do I here for a chat anytime x

[Northstar1 in reply to Kaka1234]

Do you have children x

[Kaka1234 in reply to Northstar1]

I hv 3 children 2older one hv left home they are 26 and 22, but at home we hv out daughter who is 14, do u hv family x

[Northstar1 in reply to Kaka1234]

Yes 1 son 27