Corticobasal degeneration - A personal story

I am new to this website, but thought I would share my story.

My mum has recently been diagnosed with Corticobasal Degeneration at the age of 49.

For over 6mths me and my sister had been back and forth to her local GP, only to be told she was suffering from depression. Understandably this was an obvious diagnosis as she has recently gotten divorced from my father. The were childhood sweethearts since the age of 12. So after over 30 years of marriage, and having never had previous boyfriends, it was only natural for mum to be depressed to such a degree that it was severely effecting her physically....right??? WRONG!

It all started with the hand tremor. Her right hand to be exact. Why was it tremoring? Was it a reaction to her depression medication? Why was she slurring her words as if unable to say what she was thinking? Why was she falling in obscure situations? And why was it almost impossible to reason with her?

These are all questions in which I needed answered. Something did not 'fit right' with me. Along we go to the doctors...again! Even on going to the doctors she walked out in front of a car. Not a good start!

So the GP looked concerned as she was unable to perform easy tasks, as in pushing away from the doctors hands, or touching her nose. Had a fall cause brain damage? I had no idea. The doctor referred her to the A&E for an urgent brain scan.

4 weeks as an inpatient later, after a CT scan, Lumbar Puncture, MRI, and EEG & finally a PET scan, we were told the horrific news that she had Corticobasal Degeneration. A very rare form of dementia which does not respond to any medication and is rapidly progressive.

My once strong, independant, love filled mother had now been turned into a shell of her former self and it is only going to get worse.

Not alot is known about the condition, but all I know is that it totally destroys a human being. I felt I needed to share this experience, because it just goes to show that if you have a gut feeling that something is wrong, dont let it lie!

To make matters worse, myself and my sister have just recently had babies (my 1st and my sisters 3rd) and they will never get to know how much love my mum would have had for them. She always put her kids and grandkids above everything and that makes me sad

She is now a permanent resident of a care home and has been since leaving hospital, 4 weeks after diagnosis. This was the only option available as we would not be able to give her the care she needed at home as per the social workers

26 Replies

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  • i am saddened by you letter and wish I could offer hope to you. You did well persevering with the Dr even though the news wasn't good. Please use this site, it does help to know that you are not alone with this illness.

  • hi

    i too am v sorry tha that your mothe rha sbeen dxd aged only 49

    it is no age

    i am 67 (malmost) and go t dxd with PSP in de c2010

    but yor mum is so young..

    plz stay ohn the site

    lol JIll

    :-)

  • Hi Pamela

    Your story is so similar to so many of us. Wrong diagnosis, being fobbed off with all sorts of things, but, like all of us you persevered and have the correct diagnosis of CBD. My heart goes out to you and your family, you have a long and difficult road ahead. Always remember that whatever you do for your Mum it is the right decision and never feel guilty.

    My husband died in April 2010 from PSP at the age of 58, after mis diagnosis of a stroke in July 2005, he had been 'unwell' for some time but nobody would believe us so we persevered, and he was formally diagnosed with PSP in September 2006 at the age of 55.

    God Bless you and your family. Keep strong.

    This site is a great help for support and letting off steam, we have all been there.

    Love, hugs and best wishes.

    Jenni

  • I am also so sad for you. A lot of what you say resonates with me. My mum has PSP but she was a person full of love for her children and grandchildren too. She was well into PSP when I had my daughter 4 years ago and I am expecting another baby now who will also never experience the love and devotion of a wonderful grandmother. But if it is any consolation, my daughter loves her grandmother and they do have a relationship which is touching and real. Just not the one they could have had.

    Take care

    Cate

    xx

  • The main problem with PSP/CBD is because it is so rare, most doctors have not had any patients with this dreadful disease. Staff in hospitals do not know how to treat and respect patients with it and respect is on a par with care.

    It took a group of seven neurologists to give a diagonosis of my late husband, after being through all of the tests, scans, lumbar puncture etc.

    Our local GP is excellent and I introduced her to PSP Assoc and lent her the book by them. She promptly ordered one to be held in the surgery. No doctors in our surgery had ever had to deal with CBD or PSP before.

    I wish this site had been available when he was first diagnosed as I would have felt less isolated It's good to talk with others who understand.

  • Hi Pamela

    I am so sorry to read your news I am sure you feel very overwelmed by your situation I know I did and my Mum is much older than yours - I had twins the year Mum was diagnosed but the boys get an enormous amount of pleasure from Mum and her from them even though she no longer communicates. When she is in respite the other residents love seeing the children and make us all so welcome. We see her 2-3 times a week as a family. PSP is different from CBD so the progression might be different but all you can do is carry on and build the relationship as best you can. Unfortunately we all know how it's going to end but I have found that by just taking a day at a time and acknowledging that we can only only control so much helps.

    Take care

    Saz xx

  • This is all soo true and thank you for your comments. Its stressful enough having to raise and look after your first child, let alone your mother as well. I just hope some day they find a cure or a solution for PSP/CBD.

    I also feel that there is definately not enough support out there for family left to deal with relatives financial circumstances. Mum was so ill at the time of diagnosis that we had to apply for power of attorney which was refused on the basis that she was not of sound mind. So know myself and my sister are having to apply for controllership of her finances which is costing us a heafty sum. Also having never claimed benefits in my life, I find all the ESA & DLA rather confusing and am only know beginning to get everything sorted out correctly. Nightmare!

  • hi pamela,

    i got told i had cbd when i was 49 after being told i had a frozen shoulder twice,

    then carpel tunnel which i had surgey for and didnt need, then it was parkingsons,

    then after even more tests i was finally i was told i had cbd i like your mum have a

    bad tremor in my right hand i sluer my words am unsteadey on my feet, light headed

    all the time and very forgetful, to make things worse i have now been told mine is

    now classed as a cbd syndrom as ive now been told i have ataxia type 2 and a touch

    of parkingsons but thats life isnt it well you take care i hope your mum is ok

    best wishers

    ray xx

  • i am so sorry ray for your situation. it must be awful to go through personally. i cant even begin to image what people suffering from cbd are going through. I can only comment as an outsider. are you able to type ok or are you assisted? the reason i ask, is that there is no way my mum could even co-ordinate typing, texting or reading. How long have you been diagnosed for? sorry for all the questions, I just am seeking all forms of information on my mothers diagnosis

  • I can't help thinking that it often seems that stress is ofthen a trigger for these things to emerge. My mum looked after my dad for 13 years and when he died she went downhill but with hindsight PSP had been lurking for at least 2 years before that. I also spent 2 years trudging back and forth to GPs and balance specialists with her, even ensuring mum got her cataracts done to improve her eyesight thinking this would be the answer to the falls and strange vision problems! The only thing I have noticed is that the older victims of this appear to pass through middle stage at a faster pace, perhaps due to frailty etc.

    I wish you well.

  • i agree completely. I have been saying to her neurologist if stress could have triggered this, because then i could understand or even accept it more. but apparently it does not play a factor. strange!

  • Hi Pamela sorry to hear about your mum, my dad has had cbd for 81/2 years. If u need a chat dont hesitate 2 give a shout.

    Leanne.x

  • Hi Leanne, as you can image it is alot to take in, in a very short period of time. From my parents divorce to diagnosis of mums cbd there was literally 7mths. With your dad, at what stage did he show extremely poor speech, very slow movement and incontinence? Im sorry to ask, but I am trying to see how long we have left with my mum and unfortunately, nobody can give me an answer :(

  • Pamela, When it comes to definate answers to questions about CBD/PSP there just aren't any. Because the illness is different in most patients and proceeds differently in most patients there can't be definates given by the medical experts. I'd love answers to "What stage is my wife in?" or "How long does she have to live?". Truth is no one on this earth knows the answers for sure. I've found that just dealing with a day at a time and NOT thinking about what's ahead (as least not dwelling on it) we are doing fine. My wife was given the diagnosis and read (in the beginning) the prognosis and symptoms but since then we don't discuss any of that or what MIGHT be next. Works for us.

    jimbo

  • Nobody can answer that im afraid,would b alot easier if we could. He has been peg fed for 4 years. Everything blurs together regarding timescales 2 b honest. I think it was about 31/2 years ago that the continuing care started. My son is 4 and he was still walkin with a shuffle then but bad speech. He is havin treatment for second bout of pneumonia at the moment,first bout was really nasty and they told us at the hospital that he probably wouldnt pull through but he did bless him. I truly believe that if it wasnt for the amazing care he gets from my mum (suctioning machine etc) then we would have lost him a while ago.x

  • I meant to say was still walkin with a shuffle when my son was born. Try not to think to much about whats next just take each day as it comes.x

  • hi pamela,

    i can just about type but it takes a while because of the shakeing, i started

    haveing trouble with my arm in nov 2007 then after lots of hospital visits

    and loads of tests i got diagnoised in 2009 but i take each day as it comes

    and stay poisitive that really helps a lot, if you dont mind me asking pamela

    what part of the country r you from im in essex,

    best wishers

    ray xx

  • Hi Pamela,

    So so tough on you.

    My wife got PSP,her old doctor treated her for the menopause for six years! till has a family

    we knew that it was something else and put pressure on them to find out what was wrong.

    after two years it was the neurology hospital in london that give us the dreaded news!

    How do you cope ? just look forward,don"t look back to how it was for that will cut you up.

    and try and make her time here the best you can.

  • Hi Pamela

    So sorry to see your mum has a CBD diagnosis at such a young age. It all seems to be happening so fast for you, my husband of 40 years has got slowly worse over 5 years, the last 6 months being the worst. He was given a diagnosis of CBD within 4 days in a hospital in Spain. As others have said everyone seems to have a different story to tell.

    I know that my husband loves the visits from everyone especially his grand children, even though he can no longer show much emotion, after getting his pain under control he is now able to laugh a bit.

    The PSP association will be able to help with your questions and give advice to the professionals caring for your mum.

    Thinking of you all

    Lorri

  • Hi Pamela,

    I'm so sorry to hear your news. It is such a shock when one first receives the news followed by trying to find information about the condition. Certainly the pspa was the most helpful website and their helpline was very good in the early days after my husband was diagnosed with psp 2 years ago.

    As others have said, this blog is very good not only for advice, but sharing the moments of worry, the concerns that arise from time to time and those occasions of shear frustrations when the challenges just get a little too much.

    I hope you find this site as helpful as I have had over the last couple of years.

    Best wishes and strength for the future.

    Peter3.

  • Hi Pamela,

    I know you must be overwhelmed by all this. Please hang in there and continue to search the sites and share with others in this struggle. It really does help you keep your sanity just knowing that there are others out there that understand what you are going through. Bless you. ---Rosemarie

  • Hi Pamela,

    I can sympathize with you as a 49-year-old male who has been diagnosed variously as suffering from PD, CBD, and spasticity by a number of neurologists. It basically all has to do with my left hand. It is stiff, shaky and cannot perform fine tasks. I learnt a while ago that CBD is a tauopathy, a condition characterized by an accumulation of the tau protein in the brain, resulting in nerve cell loss. I also found out that there are potential natural "tau busters" like grape seed extract, cinnamon, and turmeric. Google it and you might find some useful advice.

  • I understand completely... Im in grade ten, and I found out that my mom also has CBD... she is 51, but shes had the symptoms for 2 years.. the doctors just couldn't find the problem though! they thought it was Parkinsons Disease at first... Its terrible :( at least we (my sibllings and father and i ) have some time with her!!!

  • Pamela, thank you for sharing your story.  My sister in law has been diagnosed just recently with this very same disease.  I am just sick about it and angry.  She is like my own sister, and my close friend and watching her fade away on a daily basis overwhelms me.  But, I love her and want to get the most out of our relationship while I still can.  She hasn't started the tremors yet or the rigidity.  She has no memory loss.  But, she has very little emotion and cannot do any fine motor skills such as tie her shoes, or pour a drink.  She doesn't recognize numbers and will not eat unless you remind her.  She is becoming compulsive.  And extremely childlike. She retired a year ago so that she could care for her new grandchild that was going to be born in the fall.  After 35 years of teaching kids with special needs she has become one of them.  It is heart breaking.  I am caring for the baby because I know she can't and I know if she were in her right frame of mind she would be caring for him herself. She feels safe that he is with me and never questions why we took him from her.  Sometimes she holds him and we show her how to cuddle him so that there is some sort of bond.  But she loses interest quickly. She can't make him a bottle or change his diaper. This has all happened in a few short months.    At this point, she can be left alone at home but most likely not for much longer.  She spends most mornings with her daughter and afternoons with me.  We like to make sure she gets a good lunch.  Exercise is important and she goes to the gym everyday.  And we try to feed her healthy meals.  If we don't make her meals and get her drinks she won't think to do it herself. It is getting harder for her to dress herself.  She cannot answer the phone most times but she can still text a couple of words at a time at least good enough we can understand.    I have 5 grand babies and treat her new grandchild as my  6th because she cannot.  I do this for her.  This is a horrible disease and I think about her every minute of the day. She has a loving husband that has already flown to the moon and back to find answers .   CBS is rapidly taking my sister in law away and leaving us with a helpless human beingrowth.   Any advice would be appreciated from anyone having experience with this disease.  

  • I hope a cure will be found for these diseases very soon! I wish you a lot of courage!

    God bless you!

  • Hi Pam, sorry to hear about your mum but some interesting comments in this thread, we firmly believe that mum developed it after hitting her head and fracturing her neck although this was dismissed by the doctors. Some research I did seemed to suggest trauma could trigger the disease. Far more research is needed, CBD is little known about by medical professionals that we used to carry literature supplied by the PSPA to let them read. We found the support groups to be quite helpful but unfortunately by that time mum could not leave the house

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