Alabama Belle

[Colonel58]

Hello all.

This is my first post. I care for my wife Cathy, 56, who was diagnosed in 2012 with CBD. I am just looking for others who walk a similar path to share experiences and thoughts. I will post again. God bless.

Colonel

[Heady]

Welcome Colonel. You have found a wonderful site! We are all carers, like me, (my husband has PSP) or sufferers of PSP and CBD. Mostly PSP, but I think they are both roughly the same.

We all use this site to learn how to cope with these evil diseases that our loved one have. Please feel free to rant, rave, scream cry, what ever you need to do! We will listen, somebody, unfortunately will have gone through EXACTLY what you are going through at any one time. We will all tell you how it is, warts an all! Some will frighten you, some will give you hope, but most of all, you will realise, you are not alone!!! This is a global site, someone is always on it at any one time, so no matter time you check in, somebody will reply fairly quickly. Very comforting at 3.00am, when you can't sleep!

Everyone will share the good, the bad and the ugly and be able to answer questions that the doctors have no knowledge or even realise happens.

Being two years down the road with CBD, your life will already have changed, but I hope you have managed to keep hold of the thought that life is not over. It's just different, you can still do loads of things, may be not what you are use to, but still enjoyable.

We have a saying, "one day at a time", this is crucial! Today's problems are bad enough, without worrying about tomorrow's!!!

I look forward to "speaking" to you again and sharing this road, that life has decided we have to travel!

Lots of love

Heady

[Colonel58 in reply to Heady]

Thanks Heady. I have been wondering if there might be a blog out there where I could talk to folks going through the same as myself and Cat. I will be checking in often. God bless.

[NannaB]

Welcome Colonel. My husband was diagnosed with PSP 4 years ago so like many others, we are walking a similar path. Looking forward to sharing experiences.

Wishing you many blessing as you care for your wife.

Nanna B

[Colonel58 in reply to NannaB]

Thank you Nanny B for the kind words. I feel a little hopeful knowing I have others to talk to about our CBD.

[maryelezibeth]

Hi Colonel58 Welcome my husband had CBD the advice I would give having been through it is don't let this thing called CBD take over live today and enjoy the good days you will be able to deal with the bad ones wishing you and your family lots of good ones

[LynnO]

Welcome to this site Colonel,

Heady could not have said it better, this is the place to be to share, read, vent and learn. My husband is also 56. Our neurologist feels he has a combination of CBD and PSP. As far as I can tell, same disease, different parts of the brain. Life is like a roller coaster at my house right now, we have a lot of highs and lows and everyday is a new adventure!

One day at a time!

Lynn

[denmob]

Hi Colonel.

I am not a good "Speaker" but can certainly confirm this site and all it's participants are life savers at times. I am going through a down time at the moment so am not going to be good for a while but there are certainly some incredible people on this site who have excellent advice, are a great support and do help.

Very kind wishes to you and your wife.

Denmob

[Heady in reply to denmob]

Hi Denmob,

Sending you lots of love and hugs, sounds as if you need some.

What's up? Why are you down? Can we help in any way?

Lots of love

Heady

[denmob in reply to Heady]

Hi Heady, in a pretty bad place at the moment and need to get myself out of it. No worries, it will come out in the wash as they say.

Take care of yourself.

Denmob

[Heady in reply to denmob]

Hi Denmob,

Thinking of you. I'm here if you need to rant!!!

Lots of love

Heady

[denmob in reply to Heady]

Thank you.

[Colonel58]

I am overwhelmed at the immediate positive responses after just one day on the site. Thank you all. Recently my wife has started having trouble swallowing her morning meds. Anyone got a tip to help with this? God bless.

[LynnO in reply to Colonel58]

My husband has trouble swallowing his pills, but if he has a cookie with it, then it's better. Maybe the cookie being bigger helps push the pills down, I'm not sure. He usually doesn't have a lot of trouble swallowing bigger bites for some reason it's more smaller things. If she has trouble swallowing a lot of different things, this probably won't work. Just a thought.

[Heady in reply to Colonel58]

Hi. S was told not to eat or drink with his head leaning back, ie, not to finish the last inch of a drink, as we all automatically lean our heads back, as it opens up the airways. Is your wife doing this? I know that's how I take any pills! S has made a real effort not to do this now and the choking, while not very often, is even less now! Also rushing makes S choke, so I have had to make allowances for this.

As you say it's first thing in the morning, try getting her to do some dry swallowing and then drink some water first, just to get her muscles awake and working!

Lots of love

Heady

[Colonel58 in reply to Heady]

I will remember that. Cat uses a sippy cup. Doing the drink first and dry swallowing is a food idea

Thank you and God bless.

[goldcap in reply to Colonel58]

Welcome C58! Here's a trick a just learned with my husband. When you take your meds with a glass of water or other liquid you have to tilt your head back which can close off your throat. Better to put them in her mouth one at a time and sip water through a straw to swallow. I also have to put them in his mouth because inevitably he drops one and I don't even find out until i find it in the chair or on the floor. Keep up the good caring, blessings JG

[Colonel58 in reply to goldcap]

Thank you JG. I have heard several good ideas to help as this gets worse. One day at a time.

[Colonel58]

Thanks Lynn. I will try the food with the pill idea. This mostly happens in the morning and just with pills so far.

[Lovelyliverbird]

Hi I look after my mum .... She has a peg tube now so no problems but before as her swallow was going I remember exactly the same the morning meds were difficult. So what I did was bought a rather small pestle and mortar and crush them then add to about a teaspoon of raspberry yogurt because there was about five different tablets this was a way of getting at least 25 ml of yogurt down too!

Alabama belle is lovely tag .... I'm british but lived in Atlanra GA for several years... Loved it

[Colonel58 in reply to Lovelyliverbird]

Thank you Lovelyliverbird. My wife has always been the epitome of a southern belle. Sweet, gracious and full of life. Thank you for the pestle idea. I will try that as days may require. May the Lord bless you and your Mum.

[shasha]

LIKE EVERYONE ON THIS WONDERFUL SITE - I WELCOME YOU TOO -- SO SORRY ABOUT THE CAPS LOCK BUT I HAVE TROUBLE SEEING THE WORDS AND ALSO THE KEYBOARD - I SUFFER WITH PSP SO CAN UNDERSTAND YOUR WIFE'S PROBLEMS BUT I LIKE HER, HAVE A WONDERFUL HUSBAND WHO CARES SO MUCH FOR ME

LOVE FROM SHARON XXX

[Colonel58 in reply to shasha]

Thank you and God bless.

[FeeBee]

Hi, my husband has CBD. He lives in a care home 5 minutes up the road from our home as I couldn't manage eventually. He has settled there although it is not a nursing home and as CBD is so rare, no one had ever heard of it. At the moment he just needs gentle kindness etc and the Nero nurse is a phone call away. I know how had it can be looking after CBD sufferers and hope you are both doping.

[LynnO in reply to FeeBee]

Hi FeeBee,

What is the difference between a nursing home and a care home?