CBD

[Clair-28]

Evenin all. This is my first time posting. My mum's been diagnosed with CBD about 6 months ago and has probably had it the last 2 years.

We had a stair lift fitted but with her cognitive issues she is really struggling to use it.

She is fine walking up the stairs but struggling coming down. It seems that the last step she can't step off. She won't recognise her own feet or today she could see 2 faces.

She's also suffering with a lot of spasms the GP has prescribed Valium 4 mg a day but this isn't helping he has suggested to take 6mg but she feels so wasted after taking them. Any thoughts.

Gentle hugs to all x

[Heady]

Hi Clair, welcome to this wonderful site! Sorry you have had to join our gang! This is the place that you will learn things that the medical profession no nothing about! We are all Carers, like me or sufferers of PSP/CBD. We tell it how it is, some will frighten you, some will give you comfort. Most of all, it's a place that you can express your most inner feelings, without upsetting anyone. Nobody will judge, all too busy feeling the same!

My thoughts of medication? The medical profession do not know enough about these diseases to prescribe the correct pills. It's just trial and error. Each person is different. I would give the doctor a chance, but if you see no improvement, go back! You have to fight, then fight again. There is no cure, but different people respond to different drugs. My personnel view is, physical exercise is the best treatment. I am sure it helps keeps the body fit for as long as is possible

Lots of love

Heady

[ketchupman]

Hmmm. Seems like there should be something else for spasms besides Valium, which would definitely make one worn out and sleepy. Has she seen a neurologist that specializes in movement disorders such as CBD?

Ketchupman

[Clair-28 in reply to ketchupman]

Yes she's seen a few neurologists. Should be seeing him again soon. Will speak to him when we see him next.

[DenB]

Hi Clare-28

My husband also has CBD,was diagnosed 2013, although has had since 2010. Up until 2 years ago, he was attempting to climb steps or stairs but always with me close by. Going down was always more problematic.Because of cognitive issues he didn't even know what to do with a walking aid.He had quite a few falls, as his walking abilities became worse and oneday he fell down our front steps which took me with him.He was quite badly bruised and bloody and I fractured two fingers......of course we were lucky....it could have been a lot worse.

He has been wheelchair bound for quite a while now after he could no longer walk, so I don't have to worry about the falls anymore.

He has never been prescribed Valium and I am sure it would make your mum feel wasted. Definitely go back to the GP and ask about anything else she could take.

If she is seeing a Neurologist, maybe they could suggest something else.

I think it maybe Pregablin that my husband takes for jerks, is that what you mean by , spasms? It has helped.

Keep in touch

D X

[Clair-28 in reply to DenB]

The only way I can describe her spasms is like she's having a fit. They only last a few minutes if that. She isn't experiencing any pain.

My mum fell down the stairs 2 years ago straight from the top to the bottom. Thankfully she didn't break a bone. Although she did have concussion. We have found since this fall things are getting worse. X

[Essie23]

How is your mom now?

[Clair-28]

Gosh it's been 3 yrs since I posted this.

My mum is now being cared for in a care home. Unable to walk and struggles with communicating, she know longer recognises her family. Loosing weight by the second.

X