First time user

[djfrog]

Hi everyone,

I am a newbie at this.... my Mother was diagnosed with CBD in June this year and is now living with me in a granny annex I have created for her. I would like to hear from other people who also have or are a carer, for someone with CBD.

[Kevin_1]

Hi djfrog

Welcome.

I'm sorry you both have to deal with this. Its hard, but doable.

The thing is to plan ahead. If you are in the UK you would look at Advanced Decisions, Lasting Powers of Attorney and making sure the will is up to date. These are essential. The Age Concern website has good articles on these.

Next you perhaps need to look at getting Occupational Therapists and Physiotherapists involved. Again in the U.K. the equipment is free on loan and anything which makes caring easier will become essential.

Wishing you both the best

Kevin

[Richard33 in reply to Kevin_1]

Thanks Kevin. The Age UK (Age Concern) website has really good info. It is about time I addressed all this myself.

Richard

[Kevin_1 in reply to Richard33]

Hi Richard

I put all of that off for a long time!

Glad I got it done in the end though.

Th online .gov site is very easy to use to complete them yourself - Its got pop up advice and help. And, you can save your work and spread it out over a few days.

Good luck.

Best

Kevin

[easterncedar]

Hi, djfrog. Sorry about your mother, but good for you for setting up the annex and for reaching out to this community. It is a real lifeline in times of trouble and trauma. And there is laughing, too, occasionally. My guy had psp, so I don't know much about CBD, but many of the challenges for the carer are the same. You can ask anything here. Maybe you could tell us something about you and your mother. For starters, How long before her diagnosis did her symptoms become evident? Does she have a doctor you trust? How are you managing so far? Wishing you all the best, Easterncedar

[raincitygirl]

Hi dj frog ;

As dw12345 said: "Welcome to the group we all wish you didn't have to belong to" (!)

My husband was diagnosed with CBD this summer also. Symptoms increasing for about 3-4 years with the biggest "dive" this year (2017).

My advice in addition to the above, is to plan for a time when your mom loses speech, and think about how to communicate. In my husband's case he also lost handwriting and keyboarding ability, so we have a real challenge to communicate. It is very frustrating & exhausting for him, so a big focus for me is thinking how to make it easier for him. We use "code words" that stand in for longer sentences and expressions, e.g. "later" means "I have lots of thoughts about this but can't get it out right now - it doesn't mean I'm not interested"! Then I know to make an effort to tease it out when he is more relaxed or there is less stimulus around to interfere with his cognitive processing. We are also just starting to look at speech replacement apps for his iPad.

I've also done little things like replace all the buttons on his jeans with velcro fastening since he can't manage buttons and zips, and I've found easy-on slide sandals for him to wear, so he can do as much of his dressing by himself as possible. At some point you may need to look at her bathing facility or prepare to get home support workers in to assist in bathing.

There will be other things to talk about as the days go by; Keep posting and we'll be there to respond. Chin up! You can get through this, and as tough as it is, I don't think there is a more noble gift in the world than being the person who got someone with CBC or PSP through it to the end as lovingly as possible.

Anne G.

[Spiralsparkle]

Hi

My Mum has CBD and came to live with me last year, we are in the UK.

What part of the world do you live?

This forum is so helpful and loads of knowledge and wisdom shared.

[djfrog in reply to Spiralsparkle]

Hi, I live in Carmarthenshire.

My Mum seems to be getting worse very quickly, she is unable to dress or undress although her mind and memory are fine.Walking is very difficult but I do have a physiotherapist coming in once a week.She has gone to stay with my sister for Christmas so I am able to get on with my work and other things I cannot do when she is here.

Hope you have a nice Christmas.

[Spiralsparkle in reply to djfrog]

Same to you.

It sounds like the stage my Mum was at about just over two years ago. Physio is good and encourage her to keep moving as much as possible.

Take care

[LuisRodicioRodicio]

Hi DJFrog!

Enclose is my experience, I hope it can inspire some positive actions to other caregivers. In short these are my experiences on PSP disease expecting they could be useful :

First:

If physicians agree that there is suspicion of a Parkinson like neurological disease (PSP, CBD, etc.), then I suggest to start an intensive and systematic - gymnastic program as well as walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction.

Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.

In my opinion, as far as it is possible, the best place for a PSP/CBE patients is their own home. This entails the need for other assistants to help the main caregiver and the capacity to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all tasks that it carries out with it produces a remarkable fatigue physical and psychic. In principle, the limits I have set to send the patient to a nursing home are: dementia, very aggressive behaviour, the need to apply specialized medical care or if the patient´s needs became more complex and persistent tan it could hold up at home.

Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): At least go up and down 50 steps (odd days), walk 200-300 meters (even days), speech therapy exercises and exercises mouth and ocular muscles. Then she needs to rest at least 30 '.

We have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) help to mantain in good shape the face muscles.

In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by his own means, do it, even if it takes more time. With some help if necessary.

Without any scientific basis, only observation of few nearby neurological diseases PSP like, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.

Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one from the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she indicated. Up to present time it is the best system we could find.

To say yes or not she uses now the fist and the thumb finger.

Various medications have been tried for pain episodes (falls). There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All these treatments under medical supervision.

Our plan has been designed and adapted simultaneously by the neurologist and the family physician. In the few occasional doubts or small emergencies we are guided by physicians who are a relative or close friends of us.

We found great help information in the comments of the members of this great association -HealthUnlocked-. Also the web "CurePSP": psp.org/ is a big help.

Releasing the PSP/CBE caregiver and allowing him/her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a PSP/CBE patient is progressively taking additional tasks. To the personal previous work (when the disease had not been shown), must be added the work formerly done by the PSP/CBE patient, plus the management of the illness and the guidance of people who share the help team. A special and continous attention must be directed to the main caregiver and his/her medical history.

The bottom paragraphs are to remember that the main caregiver jobs and occupations grow at the same time as age..... without an important help is very difficult to carry out all these activities without suffer a severe wear down.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP/CBE problems. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.