CBD Lifeline

[AliBee1]

Hi. I have been following the Care Community for sometime but have only just found this one, as I was unaware of the connection with PSP and CBD. My husband was diagnosed with CBD in 2015 and it has been lonely because I knew no one else with it and even the consultants at the hospital had not encountered it. I feel as if I have been thrown a lifeline this evening.

[Marie_14]

Welcome Ali. I am so glad that you found this site. People are so supportive and kind. My husband didn't have CBD but I am aware there are people whose loved ones have it and even a couple who have it themselves. No doubt you will get replies tomorrow from them. Just remember we are always here though. I am assuming you live in the US? I live in the UK but a late sleeper!

Take care of yourself, and remember you are not alone anymore.

Marie x

[AliBee1 in reply to Marie_14]

Hi

Thank you Marie. I am in England but was so interested in finding this community I was lying in bed with my android and lost all track of the time. I can use that without the light on so it does not disturb my husband as he is ready for bed by 9pm and often wakes me in the night and he goes straight back to sleep and I am wide awake.

Ali B

[raincitygirl]

Hello Ali!

I am near Vancouver Canada, and my husband has CBD - just diagnosed this year after suspecting PSP for a couple of years. I very much recognize that feeling of catching the lifeline when finding this site: I believe I've used those very words myself There are actually quite a few CBD patients and caregivers on this site, and we'll all be happy to share info and support you. We have lots in common, and still recognize that the disease takes its own course with each individual.

Do tell us more about your husband - what symptoms is he experiencing? And you - how are you coping with the unexpected change to your life?

Look forward to hearing more from you

Hugs and support to you,

Anne G.

[AliBee1 in reply to raincitygirl]

Hi Anne

It is so amazing to find others who are coping with the same thing although I so wish they were not.

My husband is 73 and although he was only diagnosed in 2015 the tremor and falls started in 2009 and no one knew why. He now has a catheter as he lost bladder control very quickly and he is not aware that he needs to pass stools but his body spasms which is a pretty good indicator. He went down hill very quickly over 3 months and could not read, write, use a remote control or phone or carry out any personal care. He has no concept of time but can usually read a clock our daughter bought him with birds instead of numbers on it. He was a bird watcher. He can usually feed himself using adapted cutlery but often has to be reminded to eat as the spoon gets half way to his mouth and stops. He has some dysphagia so can choke quite easily but refuses drinks with the thickener in it so I use milk shakes etc and thick custard/gravy/sauce on food and natural yogurt on cereal. His walking is very laboured and unsteady. His leg will often not obey what he is trying to tell it to do and just judders. He uses a zimmer frame and a wheelchair when out. We have a hospital bed with rails which helps him turn. He has some hallucinations. When he gets an infection everything goes haywire, he starts to lean to the right, becomes very confused, hallucinates and then seizes up.

I write poetry. It is a great release. I have some of it on the carer's community.

Thank you once more

Ali B

[raincitygirl in reply to AliBee1]

You are further into the journey than I am. My husband is 78, symptoms since 2013. Can walk about the same as yours, falling more now, still continent, 95% of speech gone, cognitive loss increasing but more like extreme slow-down of processing rather than dementia as some view it. He can still eat & drink but aspirates when just breathing - go figure! Pretty much dependent on me for everything. Doesnt want to do anything, go anywhere or see anyone. I rank extreme boredom as a serious and inder-reported aspect of Caregiver Fatigue!!

Anne G.

[AliBee1 in reply to raincitygirl]

Dear Anne

I loved your description ' extreme slow-down of processing rather than dementia as some view it'. It sort of sums it up. My husband's speech is pretty good still but others notice it more than me. I agree that life can be very boring as a caregiver. I try to get him out most days but it is so much easier when it is warmer as it is quite a long winded affair. The best thing I did was to part exchange my car for a wheelchair adapted one and if we go out it then does not matter if he nods off although having others around does seem to stimulate him and make him less likely to sleep. Not easy is it?

So nice to speak with you

Ali B

[raincitygirl]

Hey...I just looked you up to follow you, and read your first post to Care Community.. You are a poet!! We just love the gifts members bring to this site: some are photographers, journalists, humorists, librarians, technicians, scientists, artists....and a poet will be fun to have!

no pressure...

[AliBee1 in reply to raincitygirl]

You might like this one:

Feeling Sorry for My Self Syndrome (FS4MS)

I’ve found a new syndrome, called FS4MS:

it can hit with a vengeance, and is hard to suppress.

Dementia carers are often afflicted:

their inner reserves being severely restricted.

It most often hits when life’s at its hardest

and the person it hits, is not at their strongest.

The effects of this syndrome are very disruptive

as how it affects normal functioning is quite unconstructive.

It can make one want to be spoilt, and cared for, and be number one,

to stop being responsible, and go out and have fun.

It can make one desire not to ‘get out of bed’

or to open the door, and take flight instead.

Patience can varnish, and a scream erupt,

or frustration take over and tears bubble up.

However, once one’s a carer, one must be reliable

but sadly this syndrome can make one feel friable.

So it’s very important to face up to one’s feelings

for, not letting them go will prevent any healing.

Accept, that the way one is feeling is quite justifiable:

and that once ones a carer, one is very susceptible.

Accept that, there will be a degree of resentment,

and believe it’s no failure to feel discontentment.

It is sad that this syndrome can be so destructive

for once one’s a carer one must be productive.

The solution to the problem must come from within

but, being a carer it’s hard to begin,

for one’s very restricted in what one can do,

so the possible options one will need to review.

One will need to accept that there’s things one can’t change

but there will be some things, that one can rearrange.

Don’t let this syndrome control the life that is yours,

so listen to music whilst you’re doing your chores.

Go out into the garden for a breath of fresh air

or, if you have faith, you can say a prayer.

You cannot go out on your own, for a drive, or a walk,

but you can use the phone, to have a good talk;

But, if you need to be careful, or it’s the wrong time of day,

use email, or text, to let your thoughts ebb away.

Share how you’re feeling with friends you can trust:

letting go of your feelings is really a ‘must’.

Love Ali B

[raincitygirl in reply to AliBee1]

Ali, this is so brilliant! Both clever and very true - you've really captured the inner & outer experience of the caregiver. I think you should make it a separate post so more will see it.

Thank you for the creative spark: it made me smile

Anne G.

[AliBee1 in reply to raincitygirl]

Good smiles are sooooo important x

[Spiralsparkle]

Hi

My Mum was diagnosed with CBD in 2016 and had been having odd symptoms since around 2012. She came to live with me in 2016 , we are in Shropshire.

Hardly anyone has heard of CBD locally so it is frustrating trying to get help and support and the services here in this county are poor to say the least.

Currently battling a recurring UTI for the last 4 weeks, it has not been fun!

Glad you found this site, has been priceless to me indeed.

Hugs

[AliBee1]

Hugs back xx

[Dadshelper]

Dad was diagnosed early 2016 with CBD, thinking back he showed symptoms about 3-3.5 years prior to that. Everyone's journey is slightly different but all have a few things in common. I'll answer any questions I can to the best of my knowledge.

People can no longer understand dad when he speaks (been using a picture board but that is becoming difficult because he can't move his left hand to point at the pictures with any degree of accuracy), basically in bed 90% of the time since he can't seem to get into a "sitting position" now, right arm/shoulder locked in place, head drooped forward all the time with chin on chest, double vision quite often as the left eye wanders and he can't focus. His food is puree'd texture, liquids are thickened to a honey+ consistency and he still chokes/coughs while eating or drinking. He has lost roughly 40lbs/18kg in the last 4 months. Recently he has started having the odd hallucination where he talks to someone standing in the doorway, no infections were found when checked.

Ron

[Hidden]

It is a life line isn’t it. I was just tellling my cousin in law that as she ran me around to do errands this morning. I’ve found out so much reading the posts on here.

[DenB]

Hi AliBee,

My husband also has CBD, diagnosed 2013. This site has been a real source of inspiration, understanding, love, support.......I could go on and on but I can't stress enough how much I learnt from the 'real' people here, when first, my husband and I were left with the diagnosis and not much understanding of what was ahead of us.

I know you will find the help on this site,that you may not find anywhere else, because we are all on the same journey.

You take care and stay in touch.

Denise x

[AliBee1]

Thank you Denise. Your reply is much appreciated.

Ali B