C.B.S

[Lindaca]

Hi all, I am new to this forum. As I do not seem to be able to get a lot of support from my local area. and do not know where else to look for it. My husband was diagnosed last year, when he first went to the hospital because of his tremors two year ago, the neurologist mentioned CBS, so have known for 2 half years, since moving down south I am not confident the doctor has heard of it. when I told him what my husband had, he said "that sounds exotic" !!!!!! My husband refuses to acknowledge there is anything wrong apart from the aging process, he is 67. he is continually clearing his throat, it is driving me absolutely round the bend. is this a symptom of CBS?, I keep asking him to go to the doctor, but he refuses, looking forward to chatting with you all, is there anyone in the Poole area?

[Debbieann]

Sorry I'm not in the Poole area, but I think I am wearing the same hat as you.This forum is the only place I have found any help or support, the only thing I've learned in the last few months it's a sad and lonely road and you have got to fight for everything, but hopefully you will feel the same as me in that you will have a lot of new friends on this forum.

Love

Debbie

[Lindaca in reply to Debbieann]

Thank you for your message x

[pspa-helpline Partner PSPA]

So sorry to hear that you are not getting any support locally. Please contact the PSPA helpline on 0300 0110 122 or [e-mail] for support and information.

Monday to Friday 9am - 5pm and 7pm - 9pm

[Mnd0vrmnky]

Hello, sorry for your troubles. You should check these guys out. Www.ethnomedicine.com

google.com/patents/WO201307...

some of us are starting our loved ones on l-serine. My dad has Psp.

They have shown how the toxin BMAA can replace serine in the amino acid chain when it's formed. Serine is used in the creation of the membranes that coat our brain/muscles/nerves. They have proven if you take BMAA and serine together the tangles/clumps of tau etc are reduced and less dense. I haven't seen any proof that serine will slow the disease if taken independently of BMAA. They are trialling it with ALS patients right now.

I think this may be only one way to create an environment that allows for these diseases to present.

*Do your own research and come to your own conclusions.

[Hidden]

Does your husband have Corticobasal Degeneration? Sometimes referred to as CBD or CBGD.

My husband was diagnosed in 14' and at first we were told early alzheimers but we took him to Cornell in NYC and this is what he has. He is just starting to have trouble swallowing, he has limited use of his hands, he is incontinent due to his hands,has great difficulty sitting down and cannot get up from a seated position. His speech has deteriorated the past two months and it is hard to understand him. Five months ago he started to not know I am his wife and we have been together 55 years. He sees others in the house at times. He is on 75 mg. Effexor which is an anti depressant and takes Seroquel 25mg at bedtime. I am trying to get help from the VA but having a difficult time.

I have found the PSP site to be very helpful as they also have CBD as part of their info structure.

However, just being able to share thoughts and feelings and compare symptoms has been very helpful.

I wish I could be more positive but I am dealing with the reality of how our lives have changed and I don't feel I am handling it very well. I am frustrated most of the time and have little patience. I have to remember that he is the one who is suffering. I do not have outside help as I feel I have to hold off because up the road seems so bleak.

I try to pray. I am not doing that well.

Wish I could help you more.

[ebaquino070]

Hello All. This group at yahoo is very informative groups.yahoo.com/neo/groups...

the members are very helpful on providing the stages of Cbs. They also have help for caregivers on how to handle a person with cbs. they have tons of archive conversations way back in the 90's. once u become a member (no fees) u will have access to conversations.

There are tabs for scientific reference, Studies atc.

Hope this helps. Best to you all!

[abirke]

Get him to a nuerologist, Now. Get on CurePSP.org It will tell you things that if he has PSP will sound familiar. Like no downward gaze, difficulty swallowing, falling (backward) all the time etc! It will also send a packet of info you can take to the doctors. The tremor may be indicative of something else...but you won't know till you get him fully assessed. I am sorry to say this, but You are your husband's only advocate right now... especially if noone else knows or even seemingly cares. Make the appt. tell your husband it is set and that he IS going. It may be good to have an "intervention" so that he hears it from a friend or other loved ones that there's something wrong....I thought B was having ministrokes and the kids were also thinking there was something the matter......I made the appt.....and the first dr., said "He's just getting old" After my daughter's nurse friend told me it was Parkinsons I started reading up and discovered PSP....The 2d appt and I told dr what B had....so he did one test; downward gaze. He immediately agreed and the rest is PSP history. Knowing what he has does not make it go away or make you any happier but at least it gives you a direction!

There is one direction that does bring comfort; spiritual direction. If you are a praying person, you know what to do. You know that God will help you find the answers....they may not be the answers you want but His comfort and guidance will be what you need. Let him guide you, through his Word....

And know that we are hear for you. Be strong, find whats wrong and how to make it through all of this!

AVB

If any of you lack wisdom, let him ask of God, that giveth to all men liberally and ubpraideth not; and it shall be given him.

James 1:5

So that you incline your ear to wisdom, and apply your heart to understanding [and]....... Proverbs 2:2

.....As one whom his mother comforts, so will I comfort you [Says the Lord]

Isaiah 66:13