Hi, I am new to the forum and can cope with anything as long as I know about it. My sister aged 57 has been diagnosed with CBD, it's taken over 2 years to get the diagnosis. She also has dementia but is starting to lose spatial awareness and had a few falls and admitted yesterday she has trouble swallowing. Her neurosurgeon has been brilliant and suggested this website as so little is known about this horrible disease. Anyone out there in the same boat that can advise on what we need to do as her loved ones to keep her as well as possible and any tips would be appreciated.
Thanks
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Scottie1960
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Welcome to this site Scottie1960 ! You will find a great deal of information here that may help you care for your sister and anticipate the changes of progression.
There are others here who have experienced caring for loved ones with CBD. We all have a different experience. Read their posts and you will get an overview of what CBD means and how it progresses. Some are brief; others have a longer timeframe. My experience with my man was brief after hospital admission, but I wrote down what I could so that others might benefit by understanding what might happen before the event and be a little forewarned.
When swallowing becomes an issue, a PEG tube has been used in PSP sufferers where their life expectancy and quality can be improved. It comes with its own problems! With my man it was not suggested, as doctors did not agree that there was a problem since they saw him eat breakfast every morning. Nor was there time or strength on our side.
My experience watching my man change before a diagnosis showed to me that something was happening faster than the Parkinson's diagnosis we were given a year ago. You may be able to judge how fast your sister isprogressing. She may be stoic and say she is OK and ignore that progress but there will come a time soon when you will need help at home to toilet, wash and dress her.
It took me by surprise when my man lost control of back muscles and could not hold himself upright. That was when I got him to hospital as he was too heavy to lift and we did not have bathroom facilities large enough to hold 2 at once. That was also when I found this site.
For us swallowing was a problem near the end and after pneumonia hit first time.
You sound like you have a good doctor who is on to the disease. Hope you are in UK who seem to help when needed - as long as you fight hard for your right to have in home carers!
You will find all that here and the advice on rights, how to go about it and which 'buttons' to push hardest! Having a correct diagnosis will no doubt help!
I hope you find the help you and your sister need to smooth the tough ride ahead. Keep in touch. There is so much help and support here that will assist you both on the difficult journey.
Thanks Jen, this all feels really raw at the moment. I will read through all the posts over the next few days and also encourage the rest of the family to do the same. Your response helped and knowing others have gone through this and are still going through it makes a difference as I don't feel alone. She is in the UK and community support so far has been excellent. Thanks again for replying. Xx
Hey sis did as you recommended and joined the site. Some pretty hard reading here as to what's ahead but might prepare us for how to help our big sis. Xx
I would suggest you check to other sites as well. CurePSP has information that you will find valuable. The Yahoo group cbgd_support is a group devoted solely to CBD, There are some valuable files there. Like here, a terrific group of people willing to share. Google Sharon Comden and you will also find more information.
Welcome Scottie1960. Unfortunately this is not a great place to have to welcome you to but alas here we are. I told honjen43, your sister in CBD that I don't know much about that particular disease, but because it is progressive I know that it has the same end as PSP. I do hope that you find the answers you are looking for and that your sister gets the care she needs. As you seek answers , call on God for comfort and strength . This is not an easy time and alot of your family's strength will be taxed trying to get through it all.
May God bless you and yours
AVB
God is our refuge and strength, a very present help in trouble....Isaiah 46:1
That Christ may dwell in your hearts by faith; you being rooted and grounded in love. Ephesians 3:17
I am a carer for my Mum who was diagnosed with CBD in spring this year. It has taken a few years to get the diagnosis.
This site has been invaluable and advice for PSP is relevant also as the do overlap with some symptoms. When you have time do a search on here of symptoms you want to read about.
I'd also contact the PSPA, they have a phone line. I see you are in UK. They can send you out their information packs or you can download them from their website. I found these very informative. They also have area representatives who can help support you with local knowledge of support available and contact them for you.
With Mum we got referrals made to people Mum will need now and going forwards as that contact is made before a crisis situation. The GP And neuro team did these. For swallowing you need to be seen by the SALT team, speech and language team. For the spatial awareness and falls asks to be seen by the neuro physio.
For the cognition issues ask to be referred to the memory team. They have now put us in touch with the Admiral nurses.
I just wanted to get the access to all support available and see what and who was the best suited, everyone is different and some will be more supportive than others. This all took many months to get referrals done.
If you haven't done already get a social care assessment and carers assessment carried out if it is felt you need more support at home for your sister.
You may have done some these suggestions already.
Mum has also found great benefit from attending the day unit at the local hospice. She wasn't keen at all at first but now enjoys picking her outfit and going to see her now friends. Sufferers all progress at different rates so again I wanted to make contact with the hospice for when she progresses and we need more help. They have been lovely and Mum is now familiar with them and the building.
I fairly new on here so there are others who have much more knowledge but I've written what I've done so far this year following diagnosis. This group has been amazing and supportive.
If you have any other questions any time just ask or message.
Hi what an excellent informative post.I think you have given spot on info.CBD is v v similar to PSP.A pretty ghastly disease.My hubby is 59 and was mis diagnosed for 3 years,finally got diagnosis of CBD January2014.It has developed alot since then.We have stairlift,wheelchair transfers.as walking is not at all possible.Catheter,no speech now and August a peg was fitted.That has been excellent and took away disastrous meal times of choking with food and fluid.Sight is also now affected.Sorry to mention all these terrible developments,so treasure the moment and dont hesitate to get help from anyone.Its a good place to air your moans groans worries and fears.Take care or yourself x
Thank you. It sounds as if you've covered everything. My sister lives in Scotland and has had the assessments you mention in the last few weeks and already a lot of this is in place. She only mentioned trouble with swallowing on Monday and has been referred for that.
I don't think she would be open at the moment to visiting the hospice but will get her husband to introduce the subject and take it from there.
Yes it is a personal choice whether to introduce the hospice or attend. It does feel such a horrifying word when said. I was apprehensive myself but the PSPA really did ask me to consider this now and not further down the road. . I'm so glad I did though as we both have a few hours break from each other and they really do look after her so well.
Hi Scottie and Monty. So sorry your Mum has CBD, my husband has PSP, from what I have gathered over the last few years, both diseases are more or less the same, both extremely evil, so I think any advise for either illness stands.
The one point I would like to stress is the importance of the Hospice movement. I know it's a dreadful word, but hospices are not places to go, to die. Their remit is to help people with life limiting diseases LIVE. They help and support the whole family as well as the patient. S goes to a day centre once a week. The one he goes to, is runs 12 week courses, they have talks how to cope with various things to do with pain etc. Often there are different therapy he can take part in. Most importantly, it's something for him to get up in the morning, to go and do something without me around. The very last thing it is, is Gods waiting room. For me, I have been on a Carers course, I am now just starting with music therapy. In between the 12 week courses, we get a community nurse come and visit, to make sure everything is OK. She has fought numerous battles with doctors, district nurses and is a huge support figure in our lives. Your Mum and her husband will need this! S has just started his 5th set of sessions. He loves it. I can promise you, if you knew my husband before, you would think I was crazy. You need to be referred by your GP.
Keep posting, we all share the good, the bad and the ugly, no comment will shock, too busy feeling exactly the same. You are not alone in this strange new world, you have found a whole new family, you didn't know existed. Together we will get through this.
I am so sorry to hear about your sister. My husband died last March of this horrible disease that no-one seems to know about. How can you help her? Well I tried my best to keep Bill out of hospital as every time he went in he got a lot worse.I kept him in the centre of things putting his bed in the lounge instead of marginalising him. Although he could not say much at the end he still understood what was said around him. I stayed as close to him at night as I could and pushed my bed right up to his so that he was aware of me. I tried to indulge his remaining pleasures in life by playing CDs, reading to him, giving him regular massages and cooking all his favourite foods. Luckily he avoided having a PEG so he could taste what he was eating. I told him that I loved him and, even if he forgot everything else, he had to remember that. The day before he died he laughed out loud at something he saw. He still enjoyed my home made caramel icecream and the raspberry fool I made using fruit I picked from the garden. He died peacefully, at home, holding my hand. I miss him so much I wish that I had died with him. So try to make your sister's remaining time as pleasant as possible. Good Luck. My thoughts are with you.
I am so glad that Bill got to pass at home with you and agree this is a horrible illness. I used to think cancer was the worst that could happen and I now that it isn't.
I'm not sure I can give you any more advice, but just to say a welcome, I only found this site recently, my husband has had CBD since 2009, and the first signs were falling over and then incontinence, which is very common, at first they thought he had a prostate problem, which was not the case, we used to live in a house, but the stairs proved impossible, and I was forever calling the paramedic team to get him up, we are now in a bungalow, one of the things hard to deal with is that the patient doesn't acknowledge the problems and are always asking when things will get better, they can only see the black and white not the grey. We started with a fantastic piece of equipment called a kaluffe, or standing hoist, which is quite small and mobile, I could not have survived without it, as there is a strap to support and hold them whilst the carer can assist with toileting and dressing , we now have a track on the ceiling, which we need now Ian cannot weight bear, the OT department are great in our area, and very approachable ,
Ian is still very alert and contributes to our conversations, but he struggles to understand some things being discussed, it's like he knows the answers but can't express the words , the PSPA helpline explained it as, you are speaking French and your partner only has limited use of the language so has to process the thought then to answer convert it back, if that makes sense, it helped me a lot to understand Ian's struggle with this terrible illness, good luck with your sister and all your family, Ian wouldn't go to a day centre, but we went to a coffee morning at the hospice and he liked it a lot, we were allocated 10 sessions, which helps for a respite break, they also do pampering sessions, like massage, hairdressing etc, so you're sister may in time find it. Useful, they are not clinical at all and very friendly staff .
Will look out for your updates and hope you get all the support you deserve
Hello my husband has had CBD now for eleven years, it's really easy to find good information on this one. From what I know CBD is very slow moving, I think it helps if can keep her as active as possible and having a good support team helps. The most important thing is to reading up on this they have help on the Parkinson's web site. Unfortunately CBD is a very hard disses to detect. We didn't know till he was sent for a PET Scan, that show Cbd and dementia. As a caregiver you are going to need a lot patients. Sorry I know this doesn't really help but feel free to keep in touch. Also as her doctor about medical marijuana that's where we are now.
Hi Scottie I am so sorry that your sister has this diagnosis. My Mum was diagnosed in January 2013, but she had symptoms well before then. I am so glad I joined this site as when I feel wobbly about it all I come here and read or post. It really helps to know we are not alone to trying to cope with this awful condition. My Mum has good and bad days but it continues to be relentless and progressive. I can't really add much more to the above except that my Dad, who is my Mums main carer, needs my support just as much as my Mum now. I try to keep strong for both of them and we work as a team with me dealing with professionals and taking Mum to appointments as well as taking her out in her wheelchair. Dad does the day to day and night care but we are getting to the point where we need additional carers. I would say planning ahead is key to coping with it. I have had difficulty with my Dad in trying to get him to accept that we need a downstairs loo, for example. I have had to back down on many an occasion in planning, so that I can keep things on an even keel with him. I posted on here about my Dad refusing to accept a wheelchair which my Mum needed and I was so frustrated with him not accepting things as quickly as me. The advice here was invaluable in that our relationship is actually more important in the long run, so I have had to wait until things have got quite urgent before my Dad has finally agreed to what I had planned months and months ago. Hope that makes sense! We are in Sussex and I also joined a fb group which is more international. I must say that I find this place much more invaluable for support. Keep in touch with us, we are in the same boat...
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