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Hello everyone

My name is Ellie , my husband Graham has C.B.D diagnosed in June he has been ill for 2years,then in January he lost his speech and had problems with walking. After lots of blood tests scans and a lumber test we were told it could be one of three, PARKINSONS P.S.P or C.B.D. The Hospital Neurologist kindly told us only time would tell, so for 6 months I watched as he slowly deteriorated. But in June we got our label, because he had developed an ailian hand.

Now October he cannot walk unaided, it has taken his speech, can only feed with a spoon, cannot write, wash or shaved

When we saw the Neurologist in September (new one because we had to move to be near our family) He was surprised how quickly he had deteriorated.

He is hard work for me to handle 6ft 3 Iam 5ft 3 . But he is such a good tempered person and always smiling. We have good family support Iam so gratFul to have.

I have been reading all your posts they have helped me come to terms with it all and stopped me feeling Why Us.

You are all so helpful to each other I thought it was time to introduce us

Love Ellie

16 Replies

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  • Welcome, Ellie. Sorry you had to join us, but it is a wonderful community. Friends in need. Hugs from Maine, where fall has suddenly arrived. Easterncedar

  • Weather sounds glorious. 96 in Tucson today. Too hot!!!

  • Good morning Easterncedar Yes, we just turned on the heater for the first time this season!

  • Hi Ellie.

    My husband was diagnosed with CBD with symtoms of not being able to write starting in 2011. Today he was fitted for a powered wheel chair, after many falls and hospital visits we gave up the walker and used an assist wheel chair around the house and for doctor visits and movies. His PT suggested a power chair for the house, so we will see. A push wheel chair is exhausting getting him in/out of all day.I dress, bathe him, he eats well but get tired and I feed him the rest. Thankfully he loves sports and soccer on tv, our sons and family live in California and try to help as much as the can but they have jobs and families. We have wonderful neighbors in Tucson, and I can run out for an errand. Also have a lady come 3 x a month for 4,hours. I too thought why me, then looked around and thought why not me. We been married 47 years and we traveled a lot, even zipp lining in 2009... This disease really blindsided us both on our retirement. Some times I think he is doing better at acceptance than I am. Glad you have family close. Too late to move around now for us but I try to take a break and a visit away. My Bob too is a prince like Graham always a smile and no complaints, I guess we are lucky that we have sweet hearts. Some one wrote all I need I have right now... So I try not to think back or too far ahead. Hugs my dear, joanne

  • Hello Ellie. Your description of your situation sounds very similar to ours except that you have family near. Our family is scattered to say the least! Bill has lost his speech needs feeding, has an alien hand, etc. etc. and I have problems being 4 foot 10 inches and Bill 5 foot 7 which is not quite as bad as you! However I have the added bonus of Parkinson's which has been diagnosed for 9 years. It is only progressing slowly as I spend quite a lot of time doing exercises and hydrotherapy but it means that I do not have the energy that I used to have.

    That is the moan out of the way. Like you I have a lovely gentle husband who loves me smiles at me most of the time despite his dreadful condition. We must stay strong for them and not let the system wear us down.

    Good luck! I will be looking out for you.

    Love Kathie

  • HI YOU 3

    GOOD 2 WELCOME YOU TO THE SIT EBUT SO SORRY THAT U JHAV E HAD 2 JOIN

    I HAVE PSP DXD DEC 2010 AND AM STILL HERE UPRIGHT MOSOT OF THE TIME APART FM WHEN I AM FLAGT ON MHY BACK OR FACE HAVING FALLEN OVER. LUCKILY I HAVE NOT HAD AHY MORE BROKEN BONES BUT REALISE IT IS MAYBE A MATTER OF ITEM BEFORE I BREAK A WRIST( OR SOMETHING WORSE)

    BUT IA M CARRHIGN ON IN TYPICAL PSP FASHION AS IF I AM STILL OK AND SITLL TRY OT DO THIGN SWHEN I REALLYU CANNOT ANY MORE

    IT IS V FRUSTRATING FOR THE PSP PERSON AND THE CARERS OR CARER AS MY PARTNER REFUSES 2 ACKNOWLEDGE THAT HE IS AND HTE PAID CARERS WHO COME IN EVERY DAY NOW EXCEPT SUNDAYS

    )NTY AOWWDXG MYH SOEECG UIS GETTIGN WORSE ; I CANNAOT NOW WALK ANYWHERE WITHOUT FALLIGNSO USE A WHEELCHAIR INSIDE AND OUT AND REALLUY COULD DO WITH A POWERED ONE FOR OUTSIDE IF NOT INSIDE AS WELL ; MY CO-ORDINATION IS ALSO V POOR NOW AND I DO NREAK HTIGNS ALL OVER THE WONDERFUL GD FLOOR APARTMENT WHERE I NOW LIVE IWTH MHY APRTNER AND CAT (HE IS 9 Y O NOW AND A V PATIENT PUSSY CAT!)I AM 69 GOING ON 21 INSIDE ME

    YOU CAN AREAD DMOR EON MHY PROFILE ABOUT ME AND MY PROBS.

    LOL JILL

    :-)

  • SORRY ABOUT ALL THE TYPOS - MY TYPGIN(!) IS NOW V DYSLEXIC1

    LOL JILL

    HUGS AND XXXX TO YOU ALL

  • Welcome, Ellie,

    Sorry you need to be here but it is really helpful. My husband has PSP. Like yours he is always smiling, patient and accepting and it breaks my heart because, although that is good, he was always a ball of energy and enthusiasm and now just lets me be responsible for everything. He is not a different person but only part of the person I married 53 years ago !!

    Are you in U.K. ? We are in London.

    Love, Jean x

  • Hi Ellie

    Welcome, I've not been on here too long but everyone is great. You can say anything and there's no judgment, just a knowledge of having been there. My husband Has PSP, with a previous diagnosis of Parkinson's. He has very soft speech, messy eating of soft foods, eyesight bad and can't wash, dress or walk by himself, though he can walk with help, which isn't too bad so I drag him round the streets as often as I can, God knows what people think when they see us, but who cares. Mind yourself at all times cos without you where would your husband be. God bless x

  • Hi Ellie, my heart goes out to you! Another person to welcome to our wonderful site. We are all Carers, like myself, husband diagnosed with PSP 2013, or sufferers of these evil diseases. We tell it how it is, warts an' all!!! Some post will frighten you, some give you hope, the rest, well, we are all here to support each other, comfort when things are tough, laugh and share the good times. Yes, there will be some! Not what you are use to, but PSP/CBD changes all of us.

    Feel free to express ALL feelings, nothing you can say will shock, we are all wearing the same tee-shirt. We all know how tiring, frustrating, lonely, devastating this journey is. The constant fight to get help and support, is enough to drive anyone to distraction!!!

    The first thing you MUST learn, you are not alone! We are here! Second, I'm afraid, it's one day at a time and stay as positive as is humanly possible. A hard task I know, but the days you can manage that, will be the good days!!! Third, NEVER, EVER say no to help!!!! Now is the time to really put a lot of effort into this. It is the hardest thing to do, asking somebody to help you. We are all guilty of this, only asking, six months after we needed it, when things are already too much for us. Try to be pro-active, realise when life is getting on top of you, tell someone and get the much needed support in place!!! I have learnt the hard way, waiting to crash before I said something! Wasn't good for me and especially not beneficial to S!!!

    Forth, stay on this site, post as much as you want. Ask any question, no matter how trivial, I find it's the little things that really get me down! Don't forget, like you, there are lots, just joining us, not sure whether to post. So your question, query, somebody else will want to know the answer as well!

    This is a long and lonely journey, we are all on, we all need friends to help us. On this road, now, you have just made loads, from all around the world. We all need each other. I really don't where I would be, without the support I receive from here. I hope you will feel the same!

    Lots of love

    Heady

  • Thank you all for your welcome replys

    Answers to some of your questions.

    We live in Yorkshie we were both born and brought there.After my husband took early retirement in 1993, all the children, we have three, had flown the nest, we bought a Moterhome and off we went. Winters in Spain summers in Britain. Graham never ailed anything except the odd cold until 2006 when he started with Colitis, in 2008 he was admitted to the emergency ward , the next day he had his bowel removed for a rare type of cancer called P.MP. He bounced back (as he does ) so we continued enjoying our retirement.

    Then came the troubled year of 2011,he started forgetting, got musel pains, had difficulty writing,. We saw a Rheumatologist who diagnosed Psoriatic arthritis.then next came the dreaded Neurologist who diagnosed cerebral vascular disease.

    Then came 2012---- speech therapist --- Pysiotherpist-- scans--blood tests--and a lumber test.Then back to the Neurologist who stated "No label" it could be one of three Parkinson's / P.sp/ or C.b.d .

    After 3years we got our LABEL because he had developed the Ailian hand ,but has I have said he is a very good patient.

    Sorry I have repeated lots of info but not got used to posting , does this go to everyone who posts ? Hubby calling must go

    Best wishes to all

    Ellie x

  • Strange but true Ellie, My whole message to you would not send. So I will do this again.

    Welcome Ellie. No matter what type of progressive disease it is always a tragedy to watch someone you love be consumed by it.....I am sorry for your husband and for you and for your family. I could read tiredness in your letter, but I could also hear a "can do " attitude in your letter! I applaud you. It is not easy...and most of us have a story about our drs. we would not want anyone to have to go through! PSP is six in about 100,00 people. CBD has about 3,000 diagnosed in the US! with more probably walking around misdiagnosed or undiagnosed.....So we all share the same anonymity(?) No one knows who we are......and our screams are as loud as our four walls can send them......I hope those who monitor can hear and send our message a little farther. We need to make ourselves known. I recieved a letter from curepsp (they also work with cbd patients who asked if I would be willing to raise money for the cause......I checked the box "YES"...I don't know what Ican do and really I can't do more than take care of my husband.......But we all must be proactive in some way....read Ellie...see if you find something noone else does......is it a nerve that cause alien limb? would acupuncture help it? Maybe message therapy.....be proactive! I admit I am not as proactive as I am telling you to be.....I too am tired..... So really the best thing I can tell you is to keep on keepin on. If you are a Bible reader, keep reading. if you pray, continue to ask for strength! so I will leave you with words that comfort me. And again I welcome you.

    AVB

    I will lift up my eyes to the hills from whence cometh my help. My help comes from the Lord, which made heaven and earth

    Psalm121:1,2

    For God has not given us the spirit of fear,; but of power, and of love and of sound mind.

    II Timothy 1: 7

  • Hi Ellie

    My husband was also diagnosed in 2013, after a couple of years of tests, withCBD.

    He has been wheelchair bound for about a year now and can't do anything at all for himself. His speech isn't good and he has trouble remembering things.

    He goes to our local hospice , once a week which is a great help, they are very supportive,but other than that, I am coping on my own but know that I may need to have carers in at some point.

    We have had hoists installed but at the moment we can just about manage with a Sara steady for transfers, I have used the hoists a couple of times but know again, that soon they will be my only way of transferring, my husband.

    If you need to get in touch anytime , please do.

    The more we can share and help each other along our journeys, can only be good.

    Best wishes

    Denise

  • Hi Ellie welcome, my husband was also diagnosed in 2013 with PSP, we think that it began in 2007, changes in him started then our just before, love and best wishes Yvonne xxxxxxx

  • Hi.

    My husband also has CBD. He was diagnosed in 2011. His symptoms started in 2008 with what we now know as the alien foot. Then came his inability to do his signature and closely followed with his jerks and heavy shoulders.

    He has been unable to shave himself for over a year now, or dress himself, wash himself or feed himself without assistance.

    He is still walking and talking coherently. The neurologist was expecting him to be in a wheelchair over eighteen months ago. We put that down to going on long walks everyday, usually around two miles. But that has started to get shorter recently. He's getting slower and not picking his feet up properly.

    We are doing exactly what the neurologist suggested....... don't change anything.... i.e. smoking or drinking. And don't put anything off. We have just come back from a month in Spain. Then we will be off next month for a week in Brighton and off to Spain again in December for ten days. I haven't sorted next year yet.

    One thing we have found to help us is laughter, especially when his alien hand starts doing its own thing

    Big hugs and take care

    Debbie

    Xx

  • Hi Ellie,

    Welcome to you and your husband, a sad road we walk together.

    I was diagnosed with CBD in June this year after four years of not knowing what was happening to me let alone understanding the falls etc. My alien arm is called The Tazz (Tazmanian Devil) he gets the blame for all the breakages I manage every day.

    I have decided that I am going to laugh my way through as best I can as CBD robs me. As I can no longer do all the things I loved to do I am replacing them with things I can manage and have never done. For example I am writing a book on my CBD journey and i am trying my hand at some finger painting, who knows there may be an artist in me waiting to be and if not, so what I am having fun just as my Nuerologist told me to do.

    Lyn.

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