My mum recently diagnosed with cbd/cbs after being misdiagnosed with parkinsons 2 years ago.

[Cianodude]

Hi my name is amanda my mum was misdiagnosed and treated for parkinsons 2 years ago..initially they said she had a mini stroke and vertigo after her sister died and treated this..last october 2 yeaes later she saw a neuro specialist in dublin and was diagnosed with cbd/cbs...her speech since october and tremors in right hand have detiorated big time...shes on sinemet and lexepro because shes not coping well with the diagnosis...her walk isnt affected yet t.g but says her head spins when she does walk..we got the cannibis oil she wont take it for us..any hints or tips about this illness about helping her prolong her life span?.shes a young 72 year old looks fab..but i have to dress her shower her put on make up dry her hair etc etc..the use of her right hand has gone compketely...

[Dadshelper]

Welcome to the site. My dad got a diagnosis of CBD in Jan 2016 after being treated for Parkinson's for about a year. You'll find a lot of info on the site by using the search feature at top of page or just ask, someone will respond in short order normally.

Dad never had any luck with sinemet and eventually it was stopped. If she says her head spins while walking it's probably not a good idea to let her walk alone anymore, try getting a gait belt, it'll help control her a bit and is something to grab in case of a fall.

Exercise is probably the best thing she can be doing to help keep the progression of CBD down some, it's not a cure but it seems to help keep the body and brain functioning together as a unit longer.

Start looking into what types of care options you have, figure out what to do about legal matters. You said her speech is getting worse so it's a good idea to get a Power of Attorney and Healthcare in place. Ask your mom what her wishes for long term care are now while she is still talking and understandable.

Ron

[raincitygirl]

Hi Amanda and Welcome!

So sorry to hear of your mum's dx. My husband was dx'd wirh CBD and died ths summer.

I agree wirh all Ron says. Keep exercising, however she safely can. In addition to PoA, Will, and long term care choices etc, spend some time capturing any family history, stories etc. Surprising what you find you don't know once the patent is gone - especially if no genealogy buffs in the family!

Also, record her voice if you can. Not just formal stuff (family stories) but videos of her talking and laughing when someone comes to visit. CBD patients can lise speech ( tho not all do) I have so many photos of my dear man, thankfully, but not one recording of his voice except for an outgoing message on our answering machine! I so wish I had a video that gives me his voice as well.

All the best to you and your mum.

Anne G.

[Tippyleaf]

Dear Amanda

Welcome to the site no one wants to join but the most fab site with so much practical experience you can pick up on. CBD/PSP is a tough road to travel not many healthcare professionals seem to actually get it- but on this site we all do!!

My hubby has PSP but we too have found exercise really helpful . I would also echo Ron’s other suggestions .

Love Tippy

[Richard33]

Amanda,

As all the good people say above, exercise is probably the only thing that can help (apart from anti-depressant drugs for her mood). Specifically Ruth has a cheap (£80) static exercise bike that she goes on most days for half an hour while watching TV. She also does Iyengar yoga several times a week - but any stretching exercise will help. Especially work on the weak right side of the body.

Richard x

[Marilyn_cbd12]

Hello, and welcome to the site. My husband has cbd so we have some experience with treatments and disease course, but , truth is, no one knows much with certainty since as a research question cbd's course and treatment remains largely unanswered. Some day it will be better but right now we all just help each other and get the best medical support we can find.

Only one suggestion from me-- not clear whether your mother began the sinemet and the lexipro at the same time. We have found it helpful to introduce pharmaceuticals one at a time because that makes it easier to sort out side effects and drug efficacy.

Best,

Marilyn

[Cianodude in reply to Marilyn_cbd12]

Hi Marilyn mum was on sine met approx 9 months before going on lexepro...we can't get her motivated to start walking and exercising...still not at that point yet

[Marilyn_cbd12 in reply to Cianodude]

Sorry she is resisting movement. Must be a devastating adjustment for her.

Marilyn