I've just found out my dad has CBD. He's had symptoms for a couple of years, was diagnosed a year ago but my parents have avoided ever saying what he has. He has always been really capable and he still is to an extent, he walks over 35 miles each week, can happily talk about events 40 years ago clearly (although his speech seems more difficult than a couple of years ago) and he and my mum are still wonderfully in love, but his movement has become more difficult, he can (after 40 years as an accountant) no longer do simple maths or use a computer, his walk is more cumbersome and he gets confused in new places.
Can someone please give me a realistic idea of what the future holds, what I can do and whether there is any hope of treatment.
Thank you
Sian
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Duncans10
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This week I've just lost my mother to what we think is psp so I will try and give advice.
The unfortunate news is your father could get worse but the process could be the most enriching for you and your father. If he does deteriorate, be there for him (if basic habits/aspects of life are taken away,
Involve him in finding a solution), tell him you love him everyday, do the things he enjoys as a family.
Depending where you are in the world try and advance all medical meetings but accept they cannot work miracles.
The key thing is to surround him with love and treat everyday as if it is his last. He could live for a long or short time but let him be
Smiling when it is his time.
My mother said she would never want to be washed or in a
Wheelchair. In the end, she loved life even though she needed help in everything-all because we gave her a fraction of the love that she gave us when she was growing up.
All the best and say to your father that people who don't even know him are thinking of him!
Well said Matt. I agree with everything you have written. Whatever your mum went through she would have been comforted to know she had such a considerate, loving son.
Hi Sian, sorry to hear about your dad, my mum was diagnosed with CBD about a year and half ago. She started with having bad confusion, spacial awareness and problems with her right arm. She hasn't had any issues with her legs but apparently it tends to happen in either arms or legs. She also has practically no short term memory and can't deal with money or write.
I joined the yahoo CBD forum which you might find helpful and in there I found a regime that someone was using to try and help their CBD - I've put my mum on that, I don't honestly know if it is slowing it down or if it is just moving at a slow rate anyway but I like to think it helps. It's lots of anti-inflammatories, such as coconut oil, Curcumin and so on (you can get it all on Amazon).
She only recently started taking some medication and it's more for her anxiety as she has had a continuing sensation of feeling her blood gushing around her body - the doc hasn't heard of it before but everyone is different in this, that is the problem. Apart from that there is no medication worth her taking.
I lost my Dad to CBD 6 months ago. We lived with the diagnosis for 3 years. It is a truly horrible illness, to watch the person you love and look up to slowly lose the ability to look after themselves, communicate, walk is, of course, heartbreaking and distressing. It is probably harder for your Dad that it is for those around him though.
My father, who was a talk-aholic lost his speech quite early on. This was the most difficult thing he had to cope with and initially upset him greatly. However you find other ways of communicating and dealing loss of mobility etc. We used flash cards, iPads (when he could point and type with assistance). Keep your Dad moving as long as possible. In the case of my Dad, it was in some ways easier when he had to use a wheelchair all the time as there were of course less falls and complications. Decisions became harder, be patient when asking questions, I found he confused yes and no. Often I'd ask the same question slowly, two or three times. The first answer was usually the wrong one. As my Dad had a good sense of humour we would make light of mistakes and problems - though sometimes he did get very down.
Don't be afraid of him being put on medication. Anti-depressants did help, as did anti-psychotics and sleeping tablets. I think I benefited from him taking the latter more than he did - he suffered terrible from night terrors. Other meds (I can't remember the name - Sinemet possibly), were prescribed as they sometimes help Parkinson patients - Dad got no benefit from them. Get a good GP/Consultant. They make a huge difference.
Take all the help that is offered to you from the medical team and friends and family. Look after your Mum and yourself and other caregivers. It can be physically and emotionally very hard. The important think to remember is that no matter how difficult it gets, and as upsetting it is for you all, but you will still see glimmers of your father there. Try to always see you Dad and not CBD. It does help you cope.
Sian, There are no treatments or medications to cure CBD or PSP. There are however drugs to help with the various symptoms. As you will find these diseases are NOT one-size-fits-all. Each patient has individual symptoms that others patients may not have or have to a lesser extent. No way of knowing the length of life. My wife was blessed to have passed on in less years than most patients (seven years). However, just like all of us there are no guarantees as to length of life. A patient can die in any phase of the disease with aspiration pneumonia, bad fall with brain trauma, or any other event. As with most elderly people it is good to avoid anything medical that would require being "put under" with drugs for an operation of any kind. My advice is to take one day at a time literally. Each day will be different and there is nothing you can do to change it or the following days (to slow the disease progress). You will read of various suggested things to try (coconut oil, Turmeric, Co-Q10, etc.). My advice is to try anything that you think might work but stop it if you don't see progress or there are bad side effects. I and others on this site have quite a bit of information so if you need answers or suggestions let us know and we will help you. There are studies going on for PSP and CBD and we can only hope a cure or aid comes soon. I sent my wife's brain to Mayo Clinic for study and confirm diagnosis to help with finding a cure or cause. Keep in mind that an absolute diagnosis will take a brain biopsy. I'm reminded of the woman who wrote a book "Finding Meaning With Charles". Her husband was diagnosed with CBD but autopsy diagnosis was PSP. Hugs to the family! Jimbo
Realistically there is no treatment for this disease but some drugs appear to help alleviate some symptoms, so you need the help of a good GP to make your Dad as physically comfortable as possible. You will need the assistance of an OT who knows what equipment is available to assist your father to remain mobile for as long as possible, and to help with the day to day procedures such as washing and dressing. You should try to have the equipment in place ahead of time as it is likely the requirements will change fairly quickly. You or your mother will need assistance in caring for your father and this will need funding as it is liable to be expensive and long term. If the GP or neurologist cannot help, a local hospice is likely to have staff familiar with this type of issue.
Sorry if this all sounds a bit bleak and matter of fact but, for example, having a hoist with an appropriate sling, that you have tried and tested while your Dad is able to offer some co-operation, can save a deal of unnecessary stress later. Others have spoken of the emotional side, and it is clear your Dad has the most important asset, a loving family environment.
I hope you find all the help and support you need,
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