CBD

[fishponds]

Hi all I have joined recently and this is my first post Looks like my husband has CBD we are waiting for MRI scan on the 2nd December before another appointment with Nurologist in January we don't know how long he has had this as he had Neck cancer 2 years ago and thought he was having side effects from the treatment But was not getting any better Its effecting mainly his right side at the moment and his short term memory .I have noticed his feet seem to be swollen and discoloured especialy on his right side and just wondered if anyone else suffered from this .He has also lost the ability to read and write and cannot even sign his name any more .Many thanks for listening

[Dadshelper]

Welcome to the site! your husband's symptoms sound similar to my father's minus the swollen feet, that came later. Is he still mobile? Getting up and moving will help with swollen legs/feet, if he is not mobile try getting some compression socks. Waiting for a doctor appt seems like forever, especially Neurologists. Letting us know the general area of the world you live in will help tailor answers for you in regards to medical and social services. If you reside in the US and your husband is a veteran start getting the VA involved, They can eventually be a big help with regards to medical equipment etc.

Ask any questions, read back posts etc, vent if things seem overwhelming or just having a bad day. We've all been there....

Ron

[fishponds in reply to Dadshelper]

Thank you Ron Yes he is Mobil And goes for short walks when not to cold he does suffer with the cold and has the house really warm while I'm in t shirts .We are in Norfolk UK My husband is 74 years old He first saw A Neurologist about 4 weeks ago and a specialist nurse last week so things are moving forward .Its difficult to come to terms with as he was so fit until 2 years ago so finds it frustrating he can no longer do the thing he used to do .Thank you for your reply .Pleased my daughter found this site .Regards Maggie

[Aprilfool20 in reply to fishponds]

Hi Fishponds. I was diagnosed with cbd two half years ago. I’m in Norfolk too. There is a support group that meets at Stoke Holy Cross about every six weeks. If you are able to attend you will be most welcome . It is so hard when you have been active to come to terms with what has happened. I can no longer drive,play guitar,line dance as my balance is all over the place. I can only go for short walks on my rollator which is a godsend. We had to change the car to accommodate it as I have had several falls and feel very nervous without it.

I am 61 and had been looking forward to an active retirement. Always been very healthy! Can still read and sort of write.

Sorry you have had to join this site.Jayne.

[fishponds in reply to Aprilfool20]

Hi Jayne oops nearly missed your message among all the other lovely messages You seem young to get such a horrible thing as CBD sorry to hear that .Driving was one of the first things my hubby had to give up as he was just all over the place .I don't think I live to close to Stoke Holly Cross but thank you for the invite .yes very hard to come to terms with though Hubby seems to have excepted it more than I thought he would Thanks a lot Kind regards Maggie x

[Kevin_1]

Welcome Fishponds

It sounds like you have both been through the mill. I'm sorry to hear that.

If you haven't found them already there are superb articles on the PSP Assoc. Website. They also have a help line which is very good indeed.

When you know where you are going with all of this and when you have caught your breath, do look at setting up Lasting Powers of Attorney (if you are in the UK) and make sure the will is up to date. Lastly do a web search about advanced decisions and 'Do Not Resuscitate' should he want that. PEG feeding later on is another highly personal decision. If he does not want that get it into the Advanced Decision.

Sorry to throw all of this at to you at such an early stage. These things make life a lot easier further down the road and they are best done early whilst he can make his own decisions about them.

You will find many on the forum with a lot of caring experience and knowledge about the way PSP and CBD progress and how to manage them. It's a friendly supportive place.

Well, you are probably at that horrible stage of waiting. So I wish you the best of getting past that.

If he is diagnosed with CBD/PSP it's worth mentioning that to the anaesthetist if any more surgery is required. I believe full anaesthetics are counter indicated for these illnesses.

Warmly

Kevin

PS Do say which country you are in. There are folk here from many countries and knowing your country means folk can tailor information to your countries resources when needed.

[fishponds in reply to Kevin_1]

Thank you Kevin and thank you for the info .yes my daughters are urging me to get power of Attorney and I will be doing this also he has expressed a wish not to be tube fed should it arise .as he had experience of that after his cancer treatment .We are in the UK .Thank you again .what a lovely caring site this is .regards Maggie

[Kevin_1 in reply to fishponds]

Welcome Maggie

Again, I am so sorry you are all faced with this.

You sound on the ball.

You will find a lot of folk here will stand with you as best we can.

Wishing you both the best.

Kevin

[fishponds in reply to Kevin_1]

Thank you Kevin I am overwelmed with the response from all

[SewBears in reply to Kevin_1]

Hi, I’ll make the this short and then add a separate comment but I cannot stress enough how important it is that you follow Kevin_1’s recommendations. In addition, please make sure that any life insurance policies are up to date regarding beneficiaries. My friend went through a major nightmare after her husband passed away because that had been overlooked. Sorry to sound brutal during this phase of the disease but the more proactive you are the less depressed you will be about it. Just my two cents.

[fishponds in reply to SewBears]

Thank you SewBears much appreciated

[messier]

Welcome to the site but sorry you've had to join us. My mother (85) has CBD although still waiting for neurology appointment - so well done on getting that far! Her memory is fine apart from 'losing' the right word quite frequently. She started with her right hand which was blamed on an old fracture. I think many people go undiagnosed for a long time because clinicians tend to focus in on one thing. My mum got very swollen feet and legs. Water tablets, keeping legs raised as much as possible and a circulation promoter foot massage machine have made a big difference. The legs are almost normal after three months of this routine. Feet still have some way to go but if he can walk with assistance then that should help.

[fishponds]

Thank you for the welcome sorry to hear about your Mum .what a horrible thing CBD is .I have his Cancer consultant to thank for the response in getting things moving It was him who didn't think his symptoms where anything to do with the Chemo and radio therapy he received 2 years ago that is interesting about the foot massager .and he is able to walk ok just slower than he used to .Thank you so much for the info .It is a big learning curve at the mo Regards Maggie

[honjen43]

Hi Maggie and welcome to this site.

Yes, you have found a group of friends who will support you both through this tough journey. You will also find you have suggestions and solutions to a lot of unanswered questions, as I did.

I agree with Kevin. It is important to put affairs in order while you are both able. Knowing how you both want to fight and deal with this disease means you have answers ready made at crucial times.

My husband was like yours. He had numerous ailments, seemed to be aging quickly and no obvious answer as to why. He was diagnosed firstly with Parkinsons and shortly afterwards we requested a neurologist. He diagnosed CBD.

His story can be read if you touch my name and get to my posts page. Our brief journey is there with its problems, some solutions, all of which I hope may help you on your journey. Not all journeys are as brief as ours! My husband was 77 when he died and symptoms began around 5 years earlier.

To search, use the "magnifying glass" top right on this page. You can also send private messages if you use the "speech bubbles" and the bell tells you if you have a response to a post or someone has liked something you said. All that helped me a great deal, having access to talk to others privately.

There are still a number of people on the site who have CBD/PSP and still contribute. They are an inspiration to others in how determination can affect quality of life!

There are many more posts on CBD since mine began. They give similar, yet different, stories and flesh out the variety of paths it can take. I could find very little when I joined and it has been a life saver for me during our battle for information, and since his death just over 3 years ago.

I have many happy memories of driving across country to Lowestoft as a child to visit my uncle and family. It had not changed a great deal on my most recent visit in the late '90's, apart from the main road bypassing Beccles, Bungay, etc!

Have lived in New Zealand now for 50-odd years!

Hugs

Jen xxx

[fishponds in reply to honjen43]

Awww thanks Jen really appreciate you taking the time to write I will certainly read your story and sorry to hear about your husband .I think my hubby has aged about 10 years in the last 2 What a journey we are on .I feel so lucky that we have 2 wonderful daughters .I love Norfolk and would not live anywhere else ,originating from Kent have lived here for more than 40 years Thank you again Hugs back to you xxx

[raincitygirl]

Hello and welcome, Maggie. Sorry about your hubby's dx. CBD sucks, but we'll be here for you to help get you through 😊

My hubby had CBD. Speech and writing, and eventually even pointing at letters on a letterboard was all lost as the disease progressed. (That doesn't seem to happen to all who have it.) Ask your SLPathologist for suggestions, equipment etc to help with communication. We were trying an ipad-based picture board when hubby died. His memory, on the other hand, stayed good all the way through!

Jen's email is right on - there is a load of info on this site if you can m ine it.

Kevin often says "google it but add Health Unlocked in the search title" - it often gives a better result.

Best wishes

Anne G.

[fishponds in reply to raincitygirl]

Hello Anne thank you so much for your reply my hubby speech is still good at the moment .But he can no longer read and write .Thank God for Audio books at least he can listen to his Favourite books Thanks again for the info much appreciated Kind regards Maggie x

[journeyofjoy]

Dear Fishponds,

Welcome to the site. It's a club you never wanted to belong to, but since you're here, you'll be glad to know you're in the right place. I would never have imagined that an on-line support group could be so helpful. People here are knowledgeable, helpful, and we truly care. We're in this together. Ask any and all questions and you'll likely get lots of helpful responses.

In the case of your husband's swollen and discolored feet, my husband had that in both legs and feet from the knees down. Purple in color and terribly swollen. He has been taking a diuretic, wearing compression stockings, and putting his feet up when possible. It has taken care of the problem.

My husband's left side gave him all the trouble at first. Eventually, the right side joined in. His left is still much worse than the right with weakness, shaking left hand, useless foot, etc.

Start now with taking care of yourself. Everyone says that and it's difficult to do but every little thing you can do for yourself will help.

Joy

[fishponds in reply to journeyofjoy]

Thank you so much Joy Yes you are right Its not a club I wanted to belong to but what a wonderful caring helpful set of people you all are Thank you for the info on the feet .legs that's very helpful to know as I was not sure if this was something separate that was happening His Left side is ok at the moment but I know that will change at some point .I had never even heard of CBD before thanks again Kind regards Maggie x

[SewBears]

Wow, you’ve received a lot of great replies already! I don’t know what I would do without this site either. At first I was afraid to write because I just didn’t feel like I was good enough, or if I would be able to spell LOL! but now this site has really grown on me. It can almost be like journaling and it’s nice to be able to go back and see where you were a year ago and what is different today compared to then. So don’t be shy.

My husband could not read or write, or sign his name either. His gait was pretty messed up. He hasn’t had any issues with leg swelling but he often faints. No two peoples symptoms are alike and everyone reacts to medications differently. It’s one big huge experiment after another but we keep trying and hope that something will work. There’s no cure of course but the best thing we can hope for is a plateau. This is a scary time for you but with time you will adjust. We all process this in different ways and however you decide to tackle the obstacles will be the right way. Try not to second guess yourself.

Sending hugs from I SewBears

Xoxo

[fishponds in reply to SewBears]

Thank you SewBears yes I have had such a great response from you all how wonderful .So nice to know Im not alone Its interesting you mention You Hubby fainting as my Hubby fainted a couple of times when he got out of the bath a few months back and I thought it was because he had the water to hot But it hasn't happened since This was before we knew he had CBD .He has been perscribed Madopar 4 weeks ago but I cant see any difference yet Thanks again Hugs back at yer kind regards Maggie xxx

[messier in reply to fishponds]

There appear to be some overlapping symptoms between CBD and PSP but also another disease Multiple System Atrophy (MSA) which my father had. It affects the internal organs most rather than the movement muscles. He used to faint quite a lot and the main triggers were standing up too quickly or eating a heavy meal, because the blood vessels couldn't compensate and the blood pressure drops. So encourage slow and gentle rising from a chair and holding on before moving off and more frequent smaller meals.

[fishponds in reply to messier]

Interesting thank you x

[AJK2001]

Hello and welcome. I am very glad you have found us, as this site is a very special place, full of very special people who support each other through thick & thin and share the good times as well. For me it has been a life saver, I hope you too find it as useful and supportive. xxx

[fishponds in reply to AJK2001]

Hi thank you for the welcome I am glad I found you all too because you are right it is a very special place so nice to get so much support from everyone Thanks For taking the time to write Kind regards Maggie x

[Birdlover415]

Welcome and sorry you had to join. I have CBD and have had symptoms for approximately 4 years. The first time I was told to see a neurologist, I said to the doctor “there’s nothing wrong with my brain”! It took a while to pin down my diagnosis. While this is a difficult disease, I hope that you and your husband will still be able to enjoy each other and the life that you have built.

[fishponds]

Hi Birdlover415 Sorry you have CBD too Its nice you can be on this site yourself as my husband would not be able to read or write comments But I will read to him the wonderful comments from you all Thank you Im sure we will both enjoy each other for a while yet we have been married for 51 years now and have known each other since I was 14 years old That's a lifetime in itself Kind regards Maggie x

[doglington]

Welcome Maggie. I am one who has completed the journey but can't leave this " family ".

You have been given excellent advice. I remember how shocked we were when we got the diagnosis of PSP.

I have two bits to add.

First - no-one gets everything you read here. So there's always something you can be grateful for avoiding !

Second - having done the necessary regarding plans try to make the most of how things are. Bazooka is a wonderful example of that ! It will get worse so you have to find the humour in awful situations - you will be amazed at what you can adapt to when you have to. Also you will often feel upset with yourself. Don't feel guilty. We've all been there. Remember it's CBD you're angry with really !!

Rant on here. Good luck.

Love from Jean xxx

[fishponds in reply to doglington]

Thank you for the very sound advise Jean .And I totaly understand why you stay after your Journey has ended sorry for your loss .Look after yourself Kind regards Maggie x