CBD Help

[Squeak63]

Hi, this is my first post. My husband had been diagnosed with corticobasal degeneration,he's 58, now on sick leave and has gone down hill alot over the last few months so cannot work at all now. Saw first symptoms just over 2 years ago, just wondering what to expect???any advice?

[Tjayoo]

So sorry to read of your husbands condition and at such a young age. As you will have been told there is no known cause and no known cure. My wife has CBD at 67 and in the past year deteriorated so now cannot walk without me holding her and then only for a few feet, say from bedroom to kitchen, being unable to use her left side a zimmer frame is out of the question. Her sight has deteriorated and I have to feed her. If you look back through the posts on this site you will understand how everyone copes with the various conditions. Look after your own health, make sure you have a break at least a couple hours a week, in the UK your local Council will have a department to enable this for no charge, usually thirty hours a quarter. Best wishes

[Hidden]

Hi. So much to handle and so much to think about. I feel for you and send you all that I have and know about this illness. We are in the USA and in NYC. My husband was diagnosed in the summer of 2014 and is being treated at Cornell. He takes 75 mg of Effexor and 25 mg. if seroquel. He is 78. I am 74. He can still walk but cannot rise from a seated position. He has had six falls. He broke ribs, collar bone and finger. It has been 8 months since his last fall and it takes everything I have to make sure he is never unattended on the stairs. My fear is that he will fall on me. The past six months he has lost 75% of his hands. He cannot do anything for himself and is completely incontinent. I have seen his ability to put a clear sentence together diminish and many times does not have the right word to express what he wants to say. 

Sadly, six months ago he started to have hallucinations and sees others around, no longer believes I am his wife, and the home we are in for 50+ years is not familiar to him. This is my greatest challenge and we argue daily but I keep insisting who I am with the hope he will come back to me.

We just purchased a lift chair. He goes to P/T and O/T twice a week and starts speech therapy in a few weeks. I use a portable urininal when we are out and during the night. I have a hard time getting him to drink any liquids as he fears having to go, a urologist put him on  50mg of Myrbetriq and that has really helped as he used to have to go every hour. He will only sleep sitting up and so we have not been together in 6 months and therefore the lift chair as I no longer hope this will change. I alone care for him 24/7. I have no outside help and we have a summer home at the Jersey shore. I started to do all the driving 3 years ago. We have two sons who are great and live within a half hour. We have 4 young grandchildren, 11, 7 and 4 yr old twins. 

He has very little interests. No longer reads and cannot understand sporting events and he was a basketball coach for over 25 yrs for 12 year olds and a wonderful athlete. He had great health in spite if his illness and has never had any surgery. He was president of his company for 20 years and retired in 2011 at 74. It was then that I noticed his gait was strange and we went to a neurologist . The first diagnosis was pernicious anemia from a B12 deficiency and he takes B12 shots every 2 weeks and sublingual 5,000 daily. 

I feel this CBD is part ALS, part Alzheimer's, part Parkinson's. 

This blog is so helpful and I have learned much about what to expect and prepare for. I have been remiss about getting outside help against advice from family and friends and I think that was a big mistake. I feel he resents all that I do because he is so helpless and it would have been better if he saw we had others to help him. I would not be so tired and frustrated and I admit I screwed up. I thought I was the miracle worker and now realize I was wrong.

I don't know what tomorrow will bring. I am an eternal optimist. I am Catholic and pray when I am at my wits end. However, I feel we are truly blessed with the memories of a great life. We have great sons and family and friends. When he started to not recognize me I reached out to everyone and used the computer to express my fears. I try to keep focused that this is his journey and not become a victim. I am proactive in all areas and although overburdened still hopeful for a better way to help him. Sad, but he has lost his manhood and is more like a frightened child. He was always there for me and although so successful at work always made time to help me with my chores and was never a macho man. Kind, sweet and caring. Now, he is angry and stubborn and has lost all empathy which I have come to understand is common to this illness. 

I hope this helps. I have a lot to say but when I read your request I needed to respond. Please keep posting. We are blessed to have this vehicle to express our needs and fears which are frightening.

This is our spring and I await the tulips and daffodils . I am grateful for the easy winter here in NY that helped me so much as we went here and there .

God Bless you and yours.

[NanBabs in reply to Hidden]

Hi Noteasyrc,

Although my husband has PSP, there are some similarities in symptoms and behaviour and I was particularly interested to see that your husband suffers from B12 deficiency. P was diagnosed with this over 20 years ago and had 3 monthly injections but then the surgery said they were not needed and stopped them for 10 years. I always kept asking to have them restarted but it was only when a neurologist noticed that the levels were dangerously low that the GP agreed to restart them. Who knows what damage was done in the meantime ?

I wish you both well on your journey and would advise you to get some help now if you can - undoubtedly you will need it in the future.

xx

[Hidden in reply to NanBabs]

Thanks NB...I will put the wheels in motion to get help when we return home after our Easter celebration.

I am so interested in your response about B12! I really believe it is an underlying and often undetected situation that must lead to these illnesses. There is a great book: "Could it B12" and I first read it online and that is what started us looking closer at Joe's symptoms. I hope anyone who is at the early stages of any illness reads it. We have been misled to not recognize the importance of B12 and what happens when the body does not have the enzyme needed to hold on to it.

Stay strong....

warm regards,

[abirke in reply to Hidden]

I have not read your (husbands) bio that introduces others to us  on this site, but if this is not on there it should be.  I am sorry for you and your husband to have to spend your golden years in physical and emotional turmoil. Remember to lean on your spiritual resources for continued strength.  My husband has PSP, and thus you and I share the same sort of issues especially the thought that what 'dad' has, is not going to get better.  We are no longer wives per se we are nanny's . I love my husband with a wifes love...So now I honor our vows, "In sickness and in health".  And we do live as normal a life as possible...I think that what really is getting me through this is my spiritual strength , soemthing that my husband instilled within me so many years ago.  We met at a Christian college, We were both Christians when we married, but B was really the driving force in keeping us centered on God.  Now I'm the driving force (literally...he can't drive anymore).So I leave you with these words that I know help me.  God bless you

AVB

The Lord is my rock, and my fortress and my deliverer,my buckler, and the horn of my salvation, and my high power.        

                                                                          Psalm 18:2

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

                                                                           IITimothy 1:7

[Hidden]

Thank you so much for your kind and very spiritual response. We just returned from church and I believe I finally turned it all over to our Lord. I am powerless in my quest to reverse this terrible side of CBD that has reared it's ugly face and has taken my Joe on a sad journey to nowhere. He is void of feeling for me and I know he no longer is capable of loving me as he always did. I must remember that he is still here and I have to regain my sense of humor because everything has been so negative these past months. The family is coming for Easter dinner on Sunday and we will enjoy being with them and sharing all the good food. I am preparing: antipasto salad and stuffed escarole and salami bread, manicotti, then ham, leg of lamb, sweet potatoes, mashed potatoes, stuffed mushrooms, eggplant, green beans and salad which no one will eat. We then have Pizza Rustica which is a meat pie, and pizza gran which is a grain pie. Fruit, nuts  cookies and pastry for dessert. My shopping is complete and I will start the gravy soon. One son and his family will show up tomorrow and we will color eggs and get the egg hunt set up. I am sure you know by now that I am Italian, and so, let me get going. Lots to do and I no longer have my buddy to help as he always did. He was in charge of chopping the parsley and garlic!

Holiday Blessings to all...

Hugs

[hellebore]

For Squeak53. I am in similar situation to you. My husband has CBD. First signs 5 years ago with a character changes. Detached and lack of personal care. Then failing to complete tasks and un steadiness. Various diagnosis but finally confirmed CBD. F has been in hospital for a while now. I did all caring and made myself ill. He was ill. He has declined rapidly since then, five yeArs seems to be a marker. He can no longer stand and has to be hoisted. I think the description of childlike is good, even his normally enthusiastic interests have now faded.

The best advice I can give you is to plan. He will become totally dependent on others by increments. Plan downstairs bed and bath. Get help. Social Services will provide care and then NHS. Print out some simple explanation of the condition with symptoms. My GP told me I knew more than her and the hospital were really glad to have it explained. CBD is complex and difficult to explain to others, we as carers absorb by trial all the things we need to know, but there is no text book for others. 

Apart from the sheer physical work involved in caring now I have found that the stress is easier. I know F may have between 1 to 3 years left and in many ways has already left me, but he does now seem more amenable and less argumentative. I was very angry at first and felt utter despair but that has gone and now I am working on getting him home to nurse him.

Remember though when caring you just do, go on and on and don't notice that brick wall creeping up on you. I learnt my lesson when I collapsed and it took 3 carers to do what I was doing alone. If you haven't already done it get a peek bottle. It is so helpful. Get some pads and bed protectors. Eventually a catheter, either sheath or supersonic. Lots of bibs. Anything Labour saving. Check out a nursing home or hospice as plan b. Get a team around you now. 

All best wishes.

[vsm0001 in reply to hellebore]

My husband has CBD and was diagnosed in 2012. Since that time he has lost the use of his left hand, arm, right hand arm. He has great stiffness in his neck and can barely turn his head even 1/4 of the way , to the left only. His left leg drags as he walks and now his right leg has weakened to the point that he was extremely unsteady and stumbles quite a bit. There have been numerous times lately that if I were not holding him up, he would be on the floor.  He cannot feed himself, dress, brush his teeth, go to the bathroom, shower, you name it and he is not able to do it.

I've been told that because of work credits he doesn't qualify for disability. Also, Social Services declined him due to having assets. These assets that I speak of are only there to pay the mortgage off.  So,  again he was denied help. I feel that this disease is starting to take over and winning the battle. It has been difficult to say the least that helping him sit, stand, walk, etc. is starting to take it's toll on me. I'm not in the best of shape physically, health wise I do ok. I'm just concerned with the fatigue, the frustration levels, etc. that sometimes get out of control. I see where you state that Social Services will help and NHS. If you don't mind my asking what type of assistance should be available for him? We live in VA which is a commonwealth state and I feel that is the reason for the denials. Anyway, any help would be appreciated. Thanks for listening.

Thank you

[Katiebow]

I have noticed that vitamin B12 deficiency keeps cropping up in posts. Ben, my husband got diagnosed with the deficiency just before diagnosis of  PSP. Makes you wonder if there UNIX a link. xx

[PGR81]

So  So sorry to hear about your husband being diagnosed with CBD my heart goes out to you both.I too have it and diagnosed December 2014 although I felt something wasn't right for a long time before that.Todate I have completely lost the use of my right hand and arm my speech is becoming slured and I am not very steady on my feet and worst of all for me is the constant tiredness.I have found my physio and my consultant have both been very good but doctor so far a waste of space!!! My husband bless him is a tower of strength to me I could not manage without him.Be brave and try not to give in to this awful decease easier said than done I know.I was dressmaker and now I can't even sew a button on but I have taught myself to paint furniture with my left hand Wish I could  offer you some help unfortunately one can't kiss it better and it will go away.From what I have read on this forum I am one of the lucky ones (if.you can call it that) . Take care of your'e self and remember it so important you have a little Me Time"Best Wishes.x

[Hidden]

Thank you friends for your kind thoughts and helpful insights. We had a wonderful Easter but when everyone left he became disoriented and annoyed. He fell three times in the two days we spent alone and has a bad bruise on his forearm and finger. We argued so much and said horrible things to each other and we never did this during our long marriage. I am so edgy and resentful and I feel I am responsible for what we are going through. I refuse to baby him and I use "tough love" tactics to keep him in the real world. I try to make him do simple things for himself and it is only two: he can shave with a rotary razor and brush his teeth with a motorized toothbrush. We have an appointment on Thursday to be assessed for home care. He will not cooperate and look at pictures of family and friends and recall names. He told our son it doesn't matter and two weeks ago when I asked him where his wife is he told me she was dead! I was crushed and felt as if I was kicked in the stomach. Yes, it is the illness, but so hard to be so invisible. I am so afraid of my own feelings. I have lost my love. I am so sad. 

Thanks for listening.

[sammy90210 in reply to Hidden]

I am so sorry to hear this - I lost my dad last Tuesday - in CBD/PSP, the patients' thoughts all get jumbled up and they get frustrated because they can't get them out and people around them cannot judge - their mental age also starts getting lesser and lesser, it took me some time to realize but I would talk to my dad like I would to a 2 year old, that humored him and I felt he relaxed a bit more - my mom did the tough-love thing and she couldn't cope with it... he still kept telling me to get lost but I talked to him like a child... kiss and hug a lot...