CBD: Hi - My name is Brenda and I was... - PSP Association

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BrenB
BrenB
35 Replies

Hi - My name is Brenda and I was diagnosed with CBD in 2015. I’m experiencing quite a number of issues and am wondering if anyone else is dealing with this disease. I have been looking for a support group for CBD. Is there anyone who is dealing with the mid-stage of CBD?

35 Replies
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easterncedar

Hi, Brenda. I'm glad you found this site. It's a good community and there are several people who are dealing with CBD. Given the different time zones, I expect someone who can help will reply later on. Where are you?

Best wishes, Sarah

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BrenB
BrenB
in reply to easterncedar

Hi Sarah,

Thanks for your response. I'm thrilled I found this support group. I already have numerous replies. I'm in the Los Angeles area and have not found one here yet.

Best,

Brenda

1 like
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Christine47
Christine47
in reply to BrenB

UCLA has a support group that meets every first Friday of the month from 2-4 at UCLA. Where in LA are you located? Big group, mostly PD, but a few PSP and MSA, coordinated with the CurePSP.

Christine

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Bargiepat

Hi Brenda,

I am in the early stages of CBD having been diagnosed in February 2017.

My biggest problem is the stiffness and uselessness of my left arm and because I live alone it is a challenge.

You have come to a wonderful place for support and future help.

Keep going and try to stay getting as much exercise as you can manage.

All best wishes ,

Patrick.

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BrenB
BrenB
in reply to Bargiepat

Hi Patrick,

I too find my left arm to be pretty much useless. I am left handed so I find it to be a real challenge. I am up for the challenge and try to roll with the punches. I find that stretching the left arm everyday is very useful.

I always try to keep smiling. Thanks for your quick reply.

Best wishes,

Brenda

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Bargiepat
Bargiepat
in reply to BrenB

Yes, stretching helps me a lot......... I go to my nearby gym and use one of the pieces of equipment .

Cheers,

Patrick.

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rriddle

Not sure where you live? There is one CBD-specific online support group and one CBD-specific monthly webinar. See:

brainsupportnetwork.org/sup...

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BrenB
BrenB
in reply to rriddle

Thanks for the website. I'll check it out and I'm in Los Angeles.

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rriddle
rriddle
in reply to BrenB

FYI - these are groups you can participate in regardless of where you live or where you are.

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Marie_14

Brenda welcome to the forum nobody wants to join. However the people on here are just wonderful. There are people with CBD and their carers on this site. Also people with PSP and their carers and those who have lost loved ones.

You will find advice, help and lots of love on this site. I thank God that I found it.

Marie x

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BrenB
BrenB
in reply to Marie_14

Thanks for your reply Marie. I can tell you have a sense of humor and we all can use that. I'm finding the wonderful group you mention.

All best, Brenda

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Dadshelper

Dad is probably in the latter stage of CBD. I am not sure what info you are specifically looking for but I will help as much as possible.

Dad is no longer able to walk, very hard to understand, has some trouble with eyesight plus recently started having mild hallucinations. His right arm is basically frozen in place, his head is always drooped forward and has difficulty swallowing.

Ron

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BrenB
BrenB
in reply to Dadshelper

Hi Ron,

I'm sorry to hear about your dad. How long has he had CBD? Are you his primary caregiver? Good luck to you.

You and your dad are in my prayers.

Best,

Brenda

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Dadshelper
Dadshelper
in reply to BrenB

Dad started having falls around mid 2013, in the fall of 2014 he had a fairly bad fall and after that moved in with me and my family. Dad has been divorced for years and I am only child. Diagnosed with Parkinson's in summer of 2015 after going thru prostate cancer treatment (in remission now) and that was changed to CBD in January 2016. I became dads caregiver as he progressed. In Sept 2017 we had a long talk and decided a nursing home was needed, I could no longer juggle his increasing needs safely and my family duities. He is close by and we visit 3-4 times a week plus I am still very active in his care plan.

hope that helps some.

Ron

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CLP71
CLP71
in reply to Dadshelper

I care for my partner who was diagnosed with CBD this January, but he first had symptoms about 3-4 years ago. They previously thought it was a stroke as only his left dominant hand was affected, but then he began to develop further symptoms and his other hand is now affected severely. Last month we were told that he has prostate cancer but we are still awaiting the results of the biopsies for more information. Was your Dad’s CBD affected by the cancer treatment at all as want to know what to expect and to be prepared (as much as you can be,) for how it may affect him. I’m aware though how everyone is different and the disease is too. Thanks.

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Dadshelper
Dadshelper
in reply to CLP71

Dad passed away Sept 2018. He was diagnosed with the cancer before CBD was diagnosed. He was still being evaluated for possible PD. Dad decided on hormone and beam radiation treatment for the cancer and best as I can remember it didn't have any affect on what neurology was doing. I hope that helps some.

Ron

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Clf169

Hi Brenda. As you will already be aware, there are lots of people on this site who can help you in different ways. I am not sure where you live - I live in Australia, and my sister is in a reasonably advanced stage of CBD. I'd be happy to chat with you any time.

Regards,

Christine

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BrenB
BrenB
in reply to Clf169

Hi Christine,

I live in Los Angeles and have been unable to find a support group dedicated to CBD. This site is giving me comfort in knowing that I am able to chat with people who have this unfortunate disease. Have you found this group helpful in dealing with a loved one who has CBD?

Best wishes,

Brenda

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Clf169
Clf169
in reply to BrenB

Hi Brenda,

Yes I have found the site helpful, but must admit I came to it quite late in my sister's diagnosis, so I think I had already discovered a lot of the issues that people were reporting. You have probably discovered already that there is no good news with CBD, and I am sorry. My sister is in quite an advanced stage and lives in a nursing home now. She was misdiagnosed twice so I am not sure how long she has had CBD but her symptoms are pretty classic. I am also not sure how much you want to know about the future - this is a progressive, deteriorating disease that has some awful symptoms. I see someone has already replied to you about the alien limb, speech, swallowing and eyesight problems. My sister has cognitive problems, she has lost almost all motion. She is moved from bed to chair in a full sling hoist. She is able to go out in a special tilt wheelchair (relieves the pressure from her back) but I know it tires and hurts her and she just won't admit it. She still has a very healthy appetite which is a worry in itself - eats more than she ever has and has gained about 20 kg. I am told that the nerves controlling her stomach won't signal that she is full. She retains her sense of humour and is amazingly gracious about the disease, and her fate.

I am happy to give you more details and would also recommend looking online. This site gave me information that the neurologist, as good as he is, had not seen - rarediseases.org/rare-disea...

Best of luck Brenda, and do stay in touch.

Kind regards,

Christine

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Brian219

Hi. Like yourself I was diagnosed with cbd in 2015. Whilst am continue to work it is getting harder. I find the local psp meetings invaluable. Just being able to talk to people and family's who are going thru this ordeal.

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Mikey12345

My husband was diagnosed with CBD in 2015. After a severe fall five months ago, he is now in nursing home. Can not stand alone. Cognitively he is in and out of reality. Searching for support group but have little time aside from caregiving.

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raincitygirl

Mikey, did u see Robin Riddle's post above re online group and webinar...

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Mikey12345

I read these sharing daily as I sit with my husband and can relate only too well. I must be doing something very wrong as I posted a more detailed sharing but got no responses and can't even find what I had written. Just not very competent at navigating the site.

My husband's CBD progressed rapidly after he fell down the stairs in September. Drs aren't sure if it's the CBD progresssion or the brain trauma which caused the severe change. Before the fall, he was at home walking with a cane, walking upstairs when he wanted, feeding himself and was alert and oriented. He is now in his 5th facility, in a wheelchair full time except when he's placed in bed using a Hoyer lift.

Struggling with guilt for not taking him home to our newly constructed downstairs with handicapped bathroom and bedroom. I'm told it would take 2 caregivers, 24 hrs a day at a minimum to care for him. I chose to admit him for long term nursing home care so far.

He is 70 yrs old. We live outside Philadelphia, Pennsylvania. He has been in a study at the University of Pennsylvania but now is a stretcher transfer by ambulance.

So many questions but let's see if this message goes through.

Thanks for letting me vent.

Liz

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raincitygirl

Hi Liz! Message came through! I'm out at an apptmt but will respond further when home later :-)

Anne G.

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Mikey12345

Great!

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raincitygirl

Hi Liz:

I know you just wanted to vent, but some of us just can't resist ;-)

The decline sounds so drastic and sudden: surely it is the effect of the fall? If that is the case, might it be that the decline will be temporary? ie brain swelling could go down? IF that was the case..then better to see if he can rally in the nursing home, and if he does, THEN bring him home with LIMITED caregiver supports? 2 caregivers round the clock is equivalent to nursing home status I would think. But IF it is a long-term loss of function, then heartbreakingly, the nursing home would likely be the best support for him?

It seems to me there are no "one right" answers for the 'our home vs. residential care' question: It seems to be about the hardest one we as a community have to face. There are multiple issues of care (how much care, how complex the care, is there dementia, what is the size of the loved one compared to the caregiver at home i.e. re transfers etc; there are cost issues (what is the cost of constant caregivers at home vs cost of nursing home) what is the availability of reliable, competent caregivers for you to hire....and on and on...

Every country and health care plan is going to be different too. This is one subject where we must support what your "gut" tells you is the right thing for your husband and you. Ultimately, no matter how much you love your husband and how much he would love to be home, "home care" has be to sustainable and YOU are the crux of that. And...it isn't just for a short haul necessarily: if all goes well, you could be years caring for your husband at home. Could you do that realistically?

PS: one comment on your disappearing post? Remember to hit the green Reply button when you've finished?

Hugs and Support to you Liz! Keep us posted. XXX

Anne G.

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Mikey12345

Anne, thank you so much for taking the time to reply. This site is so helpful and I really need to become an active member.

The doctor feels that prior to the fall, the severity of my husband's disease was not evident. Being in such familiar surroundings and with family helping so much that it was probably much worse than we believed. There was no brain bleeding or swelling, only a concussion neurologically. My intellect tells me he is nursing home status but my heart says bring him home.

He's 5'10" and down to about 170 but extremely strong. I'm 5'0" and losing strength. Yesterday it took 7 people, I am told, to change him because he is so combative. That is a major issue at the home in spite of his two Geri-psych admissions for this issue. I wonder if anyone has dealt with aggression in CBD.

He also hallucinates quite frequently, usually someone being harmed...himself, me, children or grandkids. Very violent delusions.

So much more to say but I'll hope to get some responses to the above.

Bless you all and thanks.

Liz

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raincitygirl

I'm not a medically qualified person, but these are the things other spouses with CBD patients check into: Has he been checked for UTIs? Medicine interactions? Has he seen a neurologist since the fall? What does the physician who supported his referral to the nursing home think is going on?

CBD is apparently under the umbrella of FrontoTemporal Diseases, and such diseases often have "behaviour" symptoms: aggression, obsession, inappropriate response, inhibition etc., but I've never heard of onset of these symptoms so quickly!

Hang in there Liz; deep breathe and learn to do something that seems counterintuitive when focusing so very constantly and deeply on this person you love more than any other: learn some way of separating yourself from him: You need to be able to be both ways toward your husband depending on the moment: sometimes analytical, thinking of him as a patient and what will be best for his care and state of mind; and sometimes yourself, his wife, who just wants to love him as you always have! It is helpful to be able to step into the objective persona sometimes - not just for him, but also for you.

Hugs and support XXX

Anne G.

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Mikey12345

Anne,

Thanks so much for the response. We have checked all the areas you mentioned more than once with no abnormal findings. He's only on one medication at this time so interaction isn't an issue.

The symptoms you listed to frontotemporal disease describe him.

Good suggestion regarding separating myself at times but, as you mentioned, very difficult. I am trying to spend less time at the nursing home (I am there about 7 hrs a day), but feel like I'm deserting him.

A blessing at this time is that I am not responsible for his direct care so can just sit with him and try to keep him company. That, in itself, is a challenge in that I can't mention anything that he could construe as negative as he will obsess and act out.

Can anyone else on this site see my sharings? Not sure if it's limited to you. I love to follow you as your words are wise and very helpful. Thank you for sharing your wisdom and experience.

Liz

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raincitygirl

Thank you - Its my privilege Liz: Writing helps me with my own struggles. Glad to share with you :-)

PS: others can see our posts, including when we reply to each other. If/when people want to send a private message to just one member, go up to the top of the page on the left where all the little icons are and click on the 2 bubbles one. That takes you to private conversation function.

Cheers xxx

Anne G

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Mikey12345

Thanks for the info. I'll eventually learn functionality of this site. 👍

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raincitygirl

Hello and Welcome BrenB!

There are a few of us on here who are carers for our spouses or parents wirh CBD and a few patients too. Very Sorry to hear about your diagnosis - its the.."pits".. isnt it? I'm 65 & my 78 yr old husband has CBD. Symptoms for about 4-5 yrs now, but still somewhat mobile, can eat, has cognitive issues but not dementia, has apathy and is easily exhausted. Great trouble with motor skills, has lost 98% of speech.

I have no real way to know,but would guess we are in mid-stage...

Will you tell us more about yourself?

We're here for you :-)

Anne G.

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raincitygirl

Oh yes, and that big signifier of CBD...the 'alien limb'...hubby can barely control left arm and leg.

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Meykat4

Hi Brenda,

I'm sorry you have to go through this.

My husband was formally diagnosed with CBD August 2017. But he was experiencing symptoms for at least a year and a half before that. He started with a slight left leg limp and tingling in his left arm.

He went through numerous tests which found nothing. However his symptoms continued to worsen. It was all left sided at first so his neurologist thought it was a stroke.

But as his condition continued to worsen he was sent to a body movement disorder clinic which finally diagnosed him with CBD. now he has no sense of balance, slurs his words, his movements are slow, it has spread to his right side. He has episodes of leg freezing where his legs are rock hard and impossible to bend. He has trouble repositioning himself in bed. Now he has a hospital bed. That helps him tremendously. Also i bought him very smooth night clothes which cuts down friction and helps him move better in bed.

He walks with walkers and uses a lift seat to help him get out of his chair.

Its not easy. My husband suffers from depression and anxiety.

I try to keep a positive attitude around him, and encourage him as much as possible.

It helps talk to others about this.

I wish you the best. If you want to talk, I'd be happy to talk with you.

Best wishes

Kat

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DenB

Hi Brenda,

I'm a bit slow in answering but haven't been on Here For a while and only just seen your post.

I am the carer for my husband, who is unfortunately, in the later stages of CBD

He was diagnosed in 2013 after 2-3 years of testing but first signs were in 2009/2010.

This is the best support group for CBD that I have come across. I feel lucky to have found it in the past years that I have had to care for my husband. You will find out how helpful, supportive and even loving the people on here really are, answering any questions, fears and worries that anyone may have and helping each other along.

You will learn more on this site than from any doctor or Consultant because we are all living with this awful disease, either as carer or CBD/PSP sufferer and so we can learn from each other.

I will gladly try to answer any questions, if you would like me to.

You take care

Denise x

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