View unanswered posts | View active topics It is currently Thu Apr 24, 2014 4:11 pm



Reply to topic  [ 8 posts ] 
 Another Newbie 
Author Message

Joined: Wed Jan 08, 2014 8:01 pm
Posts: 4
Post Another Newbie
I'm not American, but English, and live in Italy but I found the LBDA who has given me more information about the state that I (I would like to say we) find ourselves in than other the Alzheimers UK site (which is brilliant, if AZ is the problem) or here in Italy where dementia remains a family problem, largely behind closed doors. My husband doesn't have AZ (no biomarkers in his spinal fluid) but has a family history of LBD and Parkinson's. He has endless drug allergies, and an increasingly long history of falls. He had one hallucinatory episode (people who weren't there) pre being put on Ebixa (memantine) 14 months ago, but has been so much better since then, emotionally. His Executive Function is now all but completely gone and he can't drive any more because he can't find his way beyond the end of our gate.

We are still comparatively young, he is in his mid-sixty's and I am younger.

Is there anyone out there who is having to cope with the same thing as me? I'm pretty desperate and would like to hear, well, from just about anybody truth be told. The medical system here in Italy couldn't be bettered, but there is no external support system, the family network is all, and we don't have one. We are alone and unsupported here, and I can't just move us back to the UK now as I have no doubt that he wouldn't be able to cope with the move. He's barely surviving here but to move him would have even worse consequences.

If there is anyone out there who hasn't already been scared off by my desperation, I look forward to hearing from you. If you have been scared off, I don't blame you! I know exactly how you feel!

Badietta


Fri Jan 10, 2014 6:40 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Another Newbie
Welcome Badietta and I'm sorry for your need to be here. There are literally thousands of people who belong to this forum who have been through what you are going through or are currently going through it. Many of the folks on here have spouses with LBD, for some of us it's parents, siblings, friends, etc.

I'd suggest you read as much on this forum as you can, starting with your most currently pressing issues. When you have specific questions, you might post them under the most appropriate heading so you will be more likely to get responses.

Can you hire paid caregivers to come in and help you out or give you some respite? If your husband is still mobile and you are even thinking about moving back to the UK, I'd do it if you think you can get more family/friend support there. I didn't move my dad when we had the opportunity to do so and that is the one big regret I have. It would have made my life so much easier and I might not have ended up with a lifelong cardiac issue that happened because of the stress. (My dad was 500 mi. from my house and I was driving there every few weeks, spending a week at a time trying to manage his care, his house, his finances, etc.) By the time things got really bad he was not able to be moved unless I hired an ambulance which would have been $12,000 for ONE direction!

Anyway, it is a tough road to travel so please find yourself some support and ways of taking care of yourself. Hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 10, 2014 8:39 pm
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 160
Post Re: Another Newbie
Welcome Badietta, This is a great place to let off steam and find info. So as Lynn says, read through and ask questions as they come to you! There is a section on the Board where locations are set up so that people can connect with others in their area dealing with LBD. If you'd like to try and set one up, I think we could do that. You never know who else might be looking for some support!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Jan 15, 2014 11:17 pm
Profile

Joined: Wed Jan 08, 2014 8:01 pm
Posts: 4
Post Re: Another Newbie
Hi Lynn and Gail

Thanks so much for responding, although I've now realized that I was in completely the wrong area of this site! Bear with me, I'll get there!

Mike's Neuropsych hasn't given us a specific diagnosis yet, but given the high level of choline that she has prescribed for him (plus the B vitamins) would indicate that we are on the same wavelength.

I am doing as much reading as I can, but so much of the stuff available is geared towards AD which, as I know that he doesn't have this, is not very helpful at all. I can only go with my gut, and his mother's symptoms which, despite the fact that she was diagnosed with AD, were wholly, unaccepted, LBD - my view, but I know that I'm not wrong.

I need to do more research on the subject of choline inhibitors.

Thank you both so much for supporting me.

Badietta


Fri Jan 17, 2014 5:44 pm
Profile

Joined: Sun Feb 09, 2014 2:02 pm
Posts: 1
Post Re: Another Newbie
Ah Badietta, hello,
I felt so sad for you after I read your post, just now, how awful it must be, you must feel so isolated, and not being able to return to the Uk must be a big blow also, as Im sure you could call on family members to help aid you at sometimes.
My heart goes out to you and to your husband.
Its just as well we dont know what is in store for our futures, or we'd probably run a mile, or perhaps even father afield, I know I would have, went to Mars had I been told.

I can relate to your husbands age, me and my hubby are both in our 60's, Im 61 now, just at Christmas past, my husband will be same 61 this week, there are only 6 weeks between are ages, and we sort of grew up together, as we've been married for 42yrs, yes we were married 2days before I turned 19, so truly young.

Its my Mum who has the LWD she is 86yrs old now, and is in a Care Home as I am the only daughter she has, I have no brothers either, only me, and my Dad died 8yrs ago, his mind was fine, he had Asbestosis, died a really awful death in it too, gasping to breath, I miss him so, we were in separable. But I never sided with either of my parents I must stress that, as it turns out my Mum has recently told my Daughter, that she has never forgot nor forgiven me for loving my Aunt Mabel and my Aunt Lily, (her own sister who is 89) more than I loved her, which is complete and total nonsense.

Its not due to the LWD either, as it fluctuates, so we know when she's in it and when she isnt, and I can praise God, she is more often not in it.

Mum wasnt ever really close to me growing up, but my Dad made up for that, I never to this day can remember my Mum ever telling me that she loves me, but she does do with one of her nieces, says she loves her, and she who only recently returned from living in Canada most of her whole life, just retired to here in Northern Ireland only 2 years ago, and that hurts me in the deepest part of my being to learn that.
But because I belong to God above, as Im a born again Christian I can grin and bear it, because His grace is all sufficient for me.

I would recommend my Saviour the Lord Jesus Christ to you Badietta, most greatly.
Its only from coming to know Him in a personal relationship that I have come through much in my life and am still standing, Amen!!! Im saved, over 11yrs now and love my life Jesus has given me.
The world holds nothing for any of us, Badietta, honestly, but Jesus holds everything.
I would seriously ask you to think on this, and pray to God, and ask His help, because Human help fails, Spiritual help, never fails us.

Well Badietta, I could send you my email if you'd like to know more about this Jesus, I have lots more to tell, My Dad was also a Christian, and my Mum claims to be, but Im not to judge that's God's part, but I can say that I have my thoughts and they dont add up to how a Christian should act, as we have an example to follow, Jesus.

I hope you will find comfort, and peace, it is only to be found in Christ though.
So I pray this for you, friend, fellow sufferer.
That your burden will be lifted and shared and cut in half, when you decide to let Jesus into your life, and take away your burdens, He does and He will.
I love you in Christ.
Amen
Lordbless you Badietta and your lovely husband.
Maureen.


Mon Feb 10, 2014 8:34 pm
Profile

Joined: Sat May 25, 2013 3:53 pm
Posts: 160
Post Re: Another Newbie
Thanks for your kind thoughts Maureen. It's good that we can all find comfort in our own ways and appreciate the help offered by others.

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Feb 11, 2014 2:35 am
Profile

Joined: Mon Jan 27, 2014 11:10 pm
Posts: 49
Location: Canada, Ontario
Post Re: Another Newbie
Hi Badietta; If your husband can still board an airplane, then I would advise you to return to England where you will get good quality healthcare. If it is like here in Canada you will have to be there three months to be covered but it is still well worth it. It is such a relief in this situation to not have to worry about paying for healthcare. You will find highly qualified doctors who specialize in all forms of dementia. My husband has LBD with Parkinsonian symptoms. We have no official diagnosis after several years of these symptoms, but I am a nurse and I know how to do research so I know what he has. We are hoping to get a definitive diagnosis in a week or two. My husband has all the classic symptoms of LBD. If you wish to check these, search the Mayo Clinic online and go to the diseases, look under L for LBD. Sorry you are going through this, it is not an easy road. Anne


Tue Feb 11, 2014 10:16 am
Profile

Joined: Mon Jan 27, 2014 11:10 pm
Posts: 49
Location: Canada, Ontario
Post Re: Another Newbie
Thank you Gail for those heartfelt words for Bardietta. I can attest to what you say about putting yourself in the hands of God. I know that Jesus hold me up each and every day. It is so much easier this way, You can stop worrying and just give it all to Him to deal with. Anne


Tue Feb 11, 2014 10:21 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 8 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr