New person

[cameoboy11]

Hi my name is Jo. I have recently been diagnosedwith CBD. And living in Cornwall i am feeling a bit isolated

[Hidden]

Welcome Jo. You won’t feel isolated for long having found this website. There is an international community here with lots of information for you to draw on.

[cameoboy11 in reply to Hidden]

Thanks Jeff

[Katiebow]

Welcome Jo, you probably feel in a state of shock having your diagnosis. My husband was diagnosed with PSP over three years ago and I remember that state of shock. This wonderful site will support, listen to concerns and rants, guide and advise you what help and support there is out there, often you aren't told by the professionals what is available, the information here will enable you to ask for that support. Don't be afraid to share all of your thoughts, concerns and emotions, you will find that you are treated with utter respect and empathy no matter what you want to say.

Warm wishes

Kate xxx

[cameoboy11 in reply to Katiebow]

Thanks Jo x

[Spiralsparkle]

Hello

Everyone on this site will be supportive and you will soon feel less isolated.

The wisdom and knowledge shared is priceless. Ask questions or be an observer , whichever is best for you.

Sorry that you've had to join the site with your diagnosis. My Mum has CBD.

Sending you a big hug.

[cameoboy11]

Thanks hug gratefully received Jo x

[Yvonneandgeorge]

Welcome to the best place ever, we will always be here for you xxxxx

[cameoboy11 in reply to Yvonneandgeorge]

Thanks! Will try not to 'overdo' ! Jo xxxxx

[Bargiepat]

Hi,

You will find nothing but support and helpful advise here.......

I am a year into this 'shit' but would say to you, keep active and keep your brain solving everyday problems. ( buttering toast is just one of my many daily challenges )

Good luck,

Patrick.

[cameoboy11 in reply to Bargiepat]

Thanks ! (Am lucky cos can still butter toast !) Jo x

[Kevin_1]

Hi Jo

Welcome.

I echo everyone else here.

I hope you find this as supportive as I have.

Best to you

Kevin

[cameoboy11 in reply to Kevin_1]

Thanks Kevin ! Jo x

[raincitygirl]

Hi Jo and Welcome!

My husband, 78, has CBD. I was horrified to get the diagnosis but being a member of this site has prepared me very thoroughly and I've been able to find a philosophy and some balance (not to mention so much practical advice!)

It is sh_t, just as Bargie says - but you can find a way through with help from the friends you'll make here.

I'm in Canada near Vancouver. I visited Cornwall once - I loved it

Anne G.

[cameoboy11 in reply to raincitygirl]

Thanks Anne ! Jo x

[raincitygirl]

Hi Jo: An addendum to my earlier comment: My CBD hubby is about 5 years in (as far as I've noticed - it may have been earlier) and he can still walk (a little, very slow and shaky) is continent, can eat (best thing of all!!) and although his speech has been deeply affected - in fact, writing, keyboarding and speech were the first symptoms - in the last 1.5 years it's held at about the same level. He can communicate, though "sparingly". If you have researched CBD you will see the positives in what I've said: After 5 years of the disease, he can still have a life, have enjoyment, and relationship with his loved ones.

I wish you the best and look forward to your reports - whatever they are; good or bad

Hugs XXX

Anne G.

[cameoboy11 in reply to raincitygirl]

So heartening.... thanks ! Jo x

[Yvonneandgeorge]

Welcome jo we are welcoming you with open arms into our family, we will always be here for you. Yvonne xxxx

[Beads0122]

Jo, You are not alone. As you can see from the all the responses, this is a welcoming and caring group. You will find from this forum a wealth of information, but mostly friends who celebrate your good times and cry with you during the difficult ones. My wife was diagnosed with CBD last year, however she has shown symptoms for 5+ years and we struggled to get the correct diagnoses. You know early.

We have found that the most important thing was exercise, both physical and mental. Stay active.

Your new friend,

Bobby

[cameoboy11 in reply to Beads0122]

Thanks Bobby..... I am only 68 which feels very young to have to consider such things ! I have got a weakness on my left side and my left foot has the awful habit of turning inwards. I fall over quite a bit (usually backwards) and my swallowing is often problematic. However, have started doing Crosswords and puzzles to keep my brain active. Need to engage with physical exercise more !! . Am going to see a geriatrician in Falmouth 1st May. Was going to get second opinion as my neurologist said he thinks I have CBD. But had said earlier could be Parkinsons and I was on Madopar for ages..... which didn't do anything at all. I haven't become totally incontinent yet. As soon as I feel I need to go... I do..... which seems to help. I live with Tony who is 78 and got bad knees. He is my 'carer' although we don't get any money for that. IHe wont apply again because we do have some savings. I have 2 grown up daughters one of which lives in Australia (the other is in Bristol) and 3 grandchildren ( who are now also adults ! Gawd !) I have had to surrender my driving licence of 45 years because I failed a driving assessment. Jo x

[Beads0122]

Jo,

My wife turned 59 in January and I am a few months younger than her. So if there is a bright side, I am young enough to handle the physical aspects. I wish I was better at the emotional side. She has very similar symptoms to you, but from this forum I have seen the symptoms vary. She is unable to use her left side at all and twitches occasionally (which could be mistaken for Parkinson’s.). She leans, but the direction varies from day to day. She has not fallen yet, but on the days when she leans backward, she is very unstable and requires more assistance. She stopped driving about 5 years ago, being unable to use her pereiferal vision and understand images from mirrors. Actually, She struggles more with cognitive issues(but not memory). She has had PET scans that have identified the areas of execessive Amaloyd and Tau proteins(as a part of a research initiative), which has confirmed the diagnosis and shed light on the areas she has had difficulties.

We also have a daughter in Australia with of 3 our grandsons. We also have granddaughter in USA. It is definitively the grandkids that keeps my wife pushing everyday.

Blessings,

Bobby

[cameoboy11 in reply to Beads0122]

Thanks for getting back to me, Bobby. Sorry to hear about your wife. I had an MRI scan which was clear and then a DAT scan which showed a distinct brain abnormality, and VERY REDUCED dopamine levels. Yes grandkids keep one motoring ( not literally, unfortunately !!) along . Whereabouts in Australia is your daughter ? Jo x

[Beads0122 in reply to cameoboy11]

Melbourne. Up until last year we were living overseas and would travel to Melbourne twice a year. We have moved back to the US. They visit us now, as it is too difficult for my wife to travel that long trip.

I wish you all the success in your fight against this disease and that the progression is very slow.

Take care,

Bobby

[doglington]

Welcome, Jo.

You will find lots of support here.

I am so sorry you have to join us but, in the circumstances, its a good place to be.

Jean xxx

[cameoboy11 in reply to doglington]

Thanks hugely Jean

Jo x

[Greens]

Welcome to the forum I joined just before Christmas and it has been a god send both in keeping me sane and In the support it gives , mum has CBD and was diagnosed in 2016 but think she has had longer lots of hugs sending your way x x 💕

[cameoboy11 in reply to Greens]

Thanks ! Much appreciated ! xx

Jo

[honjen43]

Hi Jo, Knew you would not be alone and isolated for long! There were very few CBD sufferers when I found this site, but Google has obviously helped to bring more here. It was a lifesaver for me at a time when I seemed to get a slap in the face every time I turned to find a solution to my husband's illnes. Nobody had heard of CBD and all, bar one delightful Canadian doctor researching here, insisted he had Parkinsons.

I know you will find all the info helpful, informative, and I hope will give you strength to be forearmed with what you may have to face.

My husband was diagnosed with CBD only a short time before he died as his symptoms were confusing and mixed with so many other illnesses. It is interesting to note that the left side seems more affected than the right. My hubby dragged his left leg and left arm was weaker first, then his back muscles gave out on the left too.

There appear to be 2 types of CBD, and my husband, I think, had the fast track variety, although with diabetes, heart disease, poor diet (he loved cheese = 1kg a week!), all could have contributed to that fast track.

We had a lovely trip to the UK in 2013 when we made it to The Lizard, and had a lovely time exploring other parts of Devon and Cornwall, and places I had been taken to as a child in the 1940's. Quite a traumatic trip too, as that was the year when things started to go awry for him - but still good memories!

Best advice I think is to get a good exercise programme and walk as much as you can. If you search Bargiepat's profile you will find some ingenious ideas for rough terrain!!

Big Hug!

Jen xxx

[cameoboy11 in reply to honjen43]

Thanks Jen.... your info is most inspiring ( I too like cheese !!) .I think I have a good diet though. Have stopped taking any medication whatsoever as trying to rid body of any toxins and concentrate on holistic/ natural remedies such as Magnesium, Vitamin B complex etc. Just read that a teaspoon of honey/or 2 kiwi fruits before bed can help with sleep. You okay? Jo x

[honjen43 in reply to cameoboy11]

Thanks for asking, Jo. Yes. Only thing is the affinity i have with the people on this site! I can't seem to leave as i keep making close connections with folk like you! I found it so hard to get information and assistance while my husband was sick, and find some release in passing on what I learned!

Over the 5 or so years that he was changing and we did not know why as there was no clear diagnosis, I watched him battle with one setback after another, and none of it made sense - except that each diagnosis did not seem to explain the whole picture.

If you click my name, it should bring up my details and if you click 'post' or 'replies' above, you can read my input.

Stay positive, and do as much as you can; be inventive, think outside the square. I have been amazed at the ability and ingenuity shown by many here, and the shear determination of some who seem to continue to garden and paint despite severe limitations!

My love never seemed to question his lot when life became increasingly difficult, but i looked for answers that gave me an explanation that made sense. Getting a CBD diagnosis made sense to me, but getting other doctors to agree was so much more difficult!

You will find answers and support here, and may find yourself more knowledgable about CBD than your doctors! Try and find a neurologist who has specialsed in these diseases and who will learn from you!

Hugs

Jen xxx

[cameoboy11 in reply to honjen43]

I ĺive l on the lizard in UK !!!

[Kaka1234]

my husband has CBD hr is 57 and im 47, we are about 4 years in with this illness.

We try and do as much as we can together. he is still walking but slowly and carfully. Eating is fine just meeds help cutting things up. speach is slow and he gets words mixed up. Its little things he struggles with remote controls, reading and writing.

The one thing we do is laugh and smile with each other everyday, thats what helps us cope with everything.

this site has helped me feel like im not on my own x

[raincitygirl in reply to Kaka1234]

Hi Kaka;

I remember you were one of the first (if not the first) to reply to me when I first joined last fall. Our hubbies are at exactly the same place in CBD progression. I'm noticing a slow but increasing cognitive loss; muscle control about the same your are describing. My hubby is older than yours though... Glad you feel good about joining this site; it's been a sanity-saver for me too

Anne G.