I have CBD disease

[shirley46]

Hello all My name is Shirley Norman 57, who lives in Australia and would like to communicate with those living with this disease so I want feel so much alone with my daily battle ! Interested to know what medication you all take? I was put on Kinson (Sinemet) levodopa and was suggested to take Baclofen as well because of the chronic stiffness. Does anyone take it? As a new member I wish you all a Merry christmas and Happy new year for 017

[honjen43]

Hi shirley46 . I am Jen and live in Hamilton NZ. My husband was diagnosed with CBD and was given Sinamet at first. He had a bad reaction to it (nausea and dizziness) so did not have it for long. That was changed to Madopar which was more palatable. Both are given to alleviate Parkinson's disease but it does not always help those with CBD. It didn't help my husband. He got very stiff and cramped a lot and was given Baclofen. That helped. He was diagnosed very late in development of CBD so I saw little help from either.

Hope they help you. See if docs can offer something else if either does not suit you, or has little effect.

You will find more people with PSP here rather than CBD, but we all support each other.

And I can guarantee you will not feel alone! This is a great site for support and answers,

So welcome! You now have a world of new friends!

[shirley46 in reply to honjen43]

Hi folks with CBD l feel alone today on this planet called earth! Not long ago had to attend to my mothers funeral at 91 she out lived 2 Husbands an 2 brothers an at the end it was a blessing t see her go with no more suffering an now I have a battle with this dreaded disease living alone but dont mind it for can do what l can when l like!!

After all the added stress with it all the chronic stiffness seems t overcome my body an wonder uf anyone out there take a drug that too can help me? Any advice for fell desperate!!

Thank you folk Shirl

[shirley46 in reply to honjen43]

Hi Jen wonder how much does your husband take and when with the drug called Baclofen? Off to visit my local doc in hope to get a script and pray it will ease the tightness of my body ! Horrible disease and who have it we try anything to help so can get more quality out of life ! Take care Shirl

[Heady]

Hi Shirley, welcome to our wonderful site. I am here in cold, damp England. My husband has PSP, diagnosed back in 2013.

Most of the people on here are carers of PSP. But from the little I know, CBD shares a lot of the symptoms. We always value hearing from the other side. My husband lost his ability to communicate a long time ago, your thoughts, worries and experiences, will be invaluable to us.

There are other sufferers of these evil diseases on this site, who no doubt will make themselves known, when they read your post.

The only real medication, that I know of, is exercise and staying as positive as possible. It is one day at a time, today has enough challanges, without worrying what tomorrow will bring.

Lots of love

Heady

[shirley46 in reply to Heady]

Hi folk thank you for your comments! I first was told I had PD 10 years ago and the medication has helped me, still taking sinemet 4 times during the day and CR at night which is a slow release. But I felt I was getting stiffer in my muscles dragging my right foot because came so heavy, felt like a bag of stones strapped to my foot!! So went and had a MRI and found a slight shrinkage of my left side of the brain that affects the right side of the body! that is when the movement specialist said I have CBD. My yaw goes tight,right hand becomes weak, leg becomes tight, like barb wire and right foot freezes, and numb at times! Some one asked me , who is healthy ask me to explain to them over all how it feels to have this disease ! My reply was ok put on a wet suit and feel it up with wet sand and then try to get around to do the house work! So I wonder how this disease affects you and if any need to be in wheel chairs or like me I always walk with my walker for have had 2 falls. I live on my own but have a man friend who has PD , lives around the corner from me who helps out alot also a lovely lady who does my house work. Cooking is hard for me so have meals on wheels during the week! keep smiling folk for we can only do what we can, even at a slow pace !!

[abirke in reply to Heady]

Heady thats exactly right staying positive and exercising,,,, not the chemical some dr puts on you//// however these are what Bs on..... Hows S?

[Kevin_1]

Hi Shirley

So sorry you have cause to be on this site.

But welcome.

My Liz is only on symptom control medication. clomazepam to help sleep, Betmega to help bladder control, Vesicare for blood pressure.

I don't know how far you are down this road, but if that is a recent photo fairly early on? Liz had three active and good years before it started having more of an impact on her abilities, but it is an unpredictable illness.

I wish you the very best of it.

Here for you as everyone here will be too.

Warmly

Kevin (U.K.)

[pzagy]

Hi Shirley, welcome to our site.

Like Heady said, most of us are careres and families of people that have PSP/CBD. My mother in law has CBD and was diagnosed late in the deisease.

She was never offered Levodopa as with CBD there would have been no benefit to her at her stage. She does take something to sleep and to ease her anxiety however.

Again, like Heady said exercise is the best thing for you right now, dont stress about tomorrow, today is all that matters.

We are a crazy bunch, I myself just joined a month ago and I cant begin to tell you all the love and suppor I get. You can rant, get information, share your experiences and even get some recipes.

Hugs from snowy Toronto

[peterjones]

hi Shirley well what is left for me to say except I am a one finger typist and very slow at it as well I am a psp sufferer/ when I went to my neuro bloke he ask me if I was taking anything I said no he said good still don't know why he said that anyway mate welcome to the club matey will see you somewhere along the road when you write in for as chat or just join in general conversation Peter jones q.l.d. australiai am sorry I can be of no help to you except maybe to cheer you up a little matey see yer mate take care

[abirke]

My husband who was diagnosed in 2013, takes Ambien 15 mg for sleep and Glycopyrrolate for the reduction of saliva. He was around 50 when he "got' it and around 53 when diagnosed.... I'm so sorry if it is you with the diagnosis and so sorry for you who may become the carer... which ever, please keep talking to us...

AVB

[Yvonneandgeorge]

Welcome to our wonderful site, as Heady says one day at a time, my husband has PSP he was diagnosed in 2014, he takes no medication for PSP. Yvonne xxxx

[Katiebow]

Hi Shirley and welcome to this wonderful site, it is absolutely invaluable for support and information. Ben, my husband was diagnosed with PSP two years ago, he was on sinamet which didn't help and then amantadine which also didn't help. He was until recently taking Q10 capsules but has now stopped as he has problems swallowing them and doesn't think they are helping. I can imagine that living alone as it must be very difficult to perform the necessary chores that have to be done daily, I'm pleased you have a supportive friend to help you out.

Keep seeking advise and posting here I'm sure you find it a massive help.

Love Kate xxx

[C3northernheights]

Hello Shirley,

Welcome to our site, I was eventualy diagnosed last year after having countless tests. it was a relief to finally have a diagnosis although absolutely not what I was expecting, however finally having a result after years of searching was a wonderful relief , now I had something to fight although the prognosis doesn't hold out much hope I intend fighting to the end. since my diagnosis I have had the PEG fitted and am on morphine as well as countless other drugs along with botox injections. I would love to comunicate with you but perhaps we should do it by email so we don't choke up the PSP site. my email address is [e-mail] I look forward to hearing from you and any other CBD sufferers.

[beau1988]

Hi Shirley my husband was diagnosed with CBD in 2012. It's 5 yrs since his symptoms first started to impact his life & couldn't be ignored any longer. He was 56 when first diagnosed with dementia. His memory issues were one of his first symptoms. We also live in Australia. My husband takes Reminyl for memory & citalopram for mood. His right hand is particularly compromised but his ability to do anything is his main worry. He walks a couple of times a day, weather permitting & our specialist has said this is what is doing my husband the most good. This year I have seen the steadiest, though slow decline. His confusion is worse when attempting to do anything & everything. Anxiety & mood is also definitely changing & becoming worse.

I wish you luck & continued independence and health. Take care.

from

Kerry

[pzagy in reply to beau1988]

Hi SHirley, with my mother in law the first symptom was her inability to speak for long periods of time as well as falling this started in 2011. The doctors attributed her spech problems to her thyroid but after they operated they discovered there was no problem there. After 8 specialist appointments no one found anything it was quite frustrating for her, it was only after we changed her GP that she noticed her shuffling gait and sent her to a movement specialist which was in July 2015. We didnt get to see him until June 2016 which is when she got the diagnosis of CBD.

Today she is completely dependant on someone for everything from bathing, shifting in her chair, bathroom AND her anxiety and fear of being alone overtakes her mind evry minute of the day.

She has to drink everything with thickner and still chokes when she does. Her appitite is good but she is very tired now. She could sleep and rest all day, which is a 360 from what she was a month ago.

We find that getting a good nights sleep is crucial, until a month ago she was living on 2 hours of sleep a day. We had to place her in a home last month ans have a carer with her at all times. We all visit daily but she is getting physio and interacting, minimally with the other residents.

[Jlbpreston]

Hi,

My mother was just diagnosed with CBD last week at the age of 74. Over the course of the last 6 months, we have met with almost 7 neurologists. We believe this all started in 2013-2014. The doctor put my mom on Amantadine. We are trying to figure out the best short term and long term care for her as we wrap our arms and minds around this horrible disease. She is in Naples, Florida.

I would welcome advice, suggestions, and support as we try and help my mom live comfortably and safely.

Thank you,

Jennifer

[EPB44]

HI SHIRLEY I AM ELAINEI AM 72 AND WAS DIAGNOSED IN OCT/16. LAST YEAR I WAS DIAGNOSED WITH PARKINSONS. I AM ON SINEMET 200 MG TOO AS WELL AS THE PATCH ROTIGITINE 4 MG WHICH REALLY HELPS WITH A SEVERE CASE OF RLS....RESTLESS LEG SYNDROME....I HAVE STARTED A KETOGENIC DIET....DRINK BONE BROTH EVERYDAY AND OOLONG TEA 3 C. DAILY. I HAVE NOTHING TO LOSE WITH TRYING THIS APPROACH.....I GO TO THE POOL 6 TIMES A WEEK FOR DEEP WATER [e-mail]. I live in Canada

[EPB44]

HI SHILEY... I AM ELAINE ....72. I WAS DIAGNOSED W/ PARKINSONS LAST YEAR AND THIS YEAR W/CBD. I TAKE SINEMET-200 MG AS WELL AS THE ROTIGITINE PATCH-4 MG....WHICH HELPS WITH RLS.

I STARTED THE KETOGENIC DIET AND HAVE 1 C. OF BONE BROTH DAILY AND 3 C. OF OOLONG TEA....I FIGURE IT IS NOT GOING TO HARM ME.

I AM FROM CANADA [e-mail]

[shirley46]

Hi folk l wonder if there is anyone in à wheel chair living alone an how do you cope with every day life?