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 New member from Johannesburg, South Africa 
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Joined: Sun Feb 24, 2013 12:02 pm
Posts: 3
Post New member from Johannesburg, South Africa
Hi,

My dad was diagnosed for LBD last week. Looking back many of the symptoms and "warning signs" was probably clear, but we mostly made it out to be due to his nature and being a "nutty professor close to retirement".

It is not a nice diagnoses. In my head I always imagined my dad's body to go (he had prostate cancer) and me sitting next to his bed having conversations about work (we are in the same line of work - legal academics). It was not his head that was supposed to go.

I am trying to keep his head going - I talk a bit of shop when we see each other. I am not sure what meds he got, but it made a HUGE difference. I am just really really scared. The line between him being functional and him being confused seem so frail. I am not sure if he will have "good days" and "bad days" or whether the meds will give him "good years" before he starts deteriorating. I hope you all can help. There are not many support groups in Joburg - mostly for Parkinson's and Alzheimer's. Are groups like that worth while?

He was discharged from hospital today, and is at home with my mom. He is very stressed about things at work, and seems to think that the pills cured him and that he will be healthy again. How do I tell him it's not the case? Do I tell him it's not the case? Sorry for all the questions, but I don't know where to begin.


Tue Feb 26, 2013 6:11 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New member from Johannesburg, South Africa
Hi & welcome - based on my observations, he is very likely to have good days and bad days, and sometimes it's even good hours and bad hours all in the same morning or afternoon.
What I told my dad (and this went over well, considering) was:

- there's something going on in your brain and the doctors are working very hard to figure out what's happening and get you proper treatment
- I am in continual contact with your medical team to make sure you have everything available that can help you
- the total truth would have been really hard for him to take and would have just increased his depression and anxiety. He knew he was going downhill and was pretty upset about it. I was doing the above, but knowing that he was not going to "get better" and knowing that for many, current meds may not work for all LBD patients. But I had to stay positive so that he didn't lose all sense of hope, which would have been devastating for him.

If he is in mid to later stages, one of the best things you can do is read a lot to see about medications, side effects, etc. so that the drs. DON"T give him something that will make him worse. Report any changes YOU notice. You know him better than the drs, nurses, and such so don't think any change is insignificant. It probably isn't. Keep on top of this - many, many medical professionals are clueless when it comes to LBD, which is a Parkinson's-related disorder. The more info. you have, the more you can pass onto them and be an informed advocate for his care.

Encourage him and your mom to keep as much normalcy as possible - outings, if he can still do that, having friends over, doing activities at home that can keep him occupied. As he declines further (and with LBD there is overall gradual decline but also there can be big and sudden declines) and then adjust his activities accordingly.

Take care of yourself and encourage your mom to do the same. Probably a Parkinson's and an Alz. support group will be of help to you and your mom. I attended a group that was mainly CGs of Alz. patients, but some of us had LOs with FTD, LBD, vascular dementia, etc. What you are all going through as CGs is going to be pretty similar and the friendships you can make there may be very meaningful to you as time goes on.

Good luck, come back often. 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.


Tue Feb 26, 2013 1:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New member from Johannesburg, South Africa
How old is your dad? Is he still mobile? Is he still continent? Can he transfer himself from bed to chair, etc.?

If he still has a driver's license I would strongly encourage you or your mom not to let him drive anymore. Between the disease and the meds, it would not be safe for him or others for him to be driving, IMO.

_________________
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.


Tue Feb 26, 2013 1:23 pm
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Joined: Sun Feb 24, 2013 12:02 pm
Posts: 3
Post Re: New member from Johannesburg, South Africa
Thanks. I deal with things getting as much info as possible. He is 63 and responding very well to the meds. He operates as he did before a major set back. I am greatful for the set back, as it got us a diagnosis. For the past year we thought it was depression and age. The day before valentine's something happened (mini anxiety attack?) which made him extremely confused and unable to look after himself. His colleagues got him on a plane from Germany to SA and we still don't know how he made it home.

I am a bit overwhelmed about the uncertianty of it all.


Tue Feb 26, 2013 2:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: New member from Johannesburg, South Africa
Wow - that is amazing that he made it from Europe to SA by himself. I'm glad the meds he's on now are helping, and I'm sure your mom appreciates all you are doing to help out. It's a much easier thing if there are at least 2 CGs who can help and support each other and look out for the LBD patient. Sounds like he's very high functioning at this point, thankfully. 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.


Tue Feb 26, 2013 5:29 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member from Johannesburg, South Africa
Elmiedp,
I welcome you to the LBDA forums, I am wondering if I sent you some information last week as I was in contact with a person in need from SA last week. I hope you can recieve some support here as we have wonderful members and more than willing to share !

_________________
Irene Selak


Tue Feb 26, 2013 7:38 pm
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Joined: Sun Feb 24, 2013 12:02 pm
Posts: 3
Post Re: New member from Johannesburg, South Africa
Hi Irene,
I have not received anything, and would be thankful if you have information about support in SA.
E


Wed Feb 27, 2013 8:48 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member from Johannesburg, South Africa
Hi E,
I don't have much I just thought it strange that I was in contact with someone from the same area. Here is a link to the Alzheimers and I know they often can hook you up with some info and support! I hope it helps !

South Africa
Alzheimer's South Africa
10 Boskruin Business Park
Bosbok Road
Randpark Ridge ext 58
2169
South Africa
Tel: +27 11 792 2511/8387
Fax: +27 11 792 7135
Helpline: 0860 102 681 (Mornings from 09h00)
Email: info@alzheimers.org.za
Web: www.alzheimers.org.za

_________________
Irene Selak


Wed Feb 27, 2013 1:49 pm
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