lewy Body

[Wayakka]

After the dr telling us in the last few months my elderly father has Parkinsonism then Vascular Parkinson’s now a specialty has said he has Lewy Body Disease in any case he is in the advanced stages he can’t walk very much at all on a good day minimal on a bad day not at all now not even bathroom he is going into assisted care facility as I can’t do what I can for him alone it’s heart breaking

what can I do to help him and how do I get myself to accept this I feel so sick as I’ve seen his change in the last 12mths now we finally know he’s in the advanced stage and I feel hopeless 😔😢

[M1tz1]

My heart goes out to you, Wayakka. At age 80, my husband was late diagnosed with PD (complicated story). He, too, could suddenly no longer walk at all or even talk --just whisper. I was blessed in being able to look after him at home with daily care. It was a comfort to him to remain where he had lived for over fifty years. I pray that you will find a solution that is as comforting as possible to you both. With love.

[Wayakka in reply to M1tz1]

thank you I really appreciate ur words it is so hard and we are able to have him home for overnight stays or day visits and I'm thinking of getting him home at the end if its possible not sure but yes its all moved so fast and I'm still in shock and trying to catch up x

[M1tz1 in reply to Wayakka]

Thinking of you. Hang in there.

[9284 in reply to Wayakka]

It's such a horrible disease Thinking of you x

[laglag]

I understand your pain. For the last year or more my dad has been going downhill pretty fast. He went from to using a cane to using a walker, now he occasionally has to use a wheelchair. He also has lost about 60% of the use of his arms. He fell in Jan, the 5 times in Feb & wrecked his car. I've taken him to so many doctors & none of them can figure out what's wrong with him. I've had PD for 15 yrs & it's been very difficult for me to take care of him. I moved him to Assisted Living a few weeks ago & he's been ok with it & I never thought he would be. I still worry about him, but at least I know there'd someone there to take care of him if he falls or needs help. He misses driving, but he admits it's not good for him to keep driving. Just make sure you visit several facilities and ask lots of questions so you can get him the best care you can. I don't have the website readily available, but you can search the internet for questions to ask the assisted living facilities you visit. I think one was called "A place for Mom". Good luck & keep your chin up. Your dad appreciates everything you are doing for him.

[Wayakka in reply to laglag]

Thank you so much for your reply and what you have said is practically exactly my fathers journey decline and then even more rapid in the last 4 mths and he too had a fall in January not a big one butyes the change is shocking 😢

I really appreciate u sharing ur story it really does help to know theirs others out there who understand

Thanks again take care and many prayers to your father and yourself

[Dee1980]

So sorry you're going through this, just know you're not alone.

What medications, pharma or natural or otherwise, is your father on?

[Wayakka in reply to Dee1980]

I’m nit sure why he’s in I know they tried a Parkinson’s medication but he actually stops walking and had greater delusions when he is on them so I’m not sure it kind of afraid that he may be past meds helping him !! They tried twice but stop because the delcusions are to great and yes he seems to not be able to rise out of bed even for bathroom where he can usually do that

Thanks for your reply appreciate u reaching out

Cheers wayakka

[jeffreyn]

Hi Wayakka,

About four years ago Robin Williams died. The coroner's report revealed that he had a form of Lewy Body Disease called diffuse LBD. His wife subsequently wrote an article that was published as a special editorial in the journal "Neurology".

I realize that your father's case is different, but it might be worth reading the article (if you've not seen it already) to gain background information, and possibly a few pointers on what to look out for, and questions/issues to discuss with the neurologist.

n.neurology.org/content/87/...

Warm Regards,

Jeff

[Wayakka in reply to jeffreyn]

Thank u Jeff I will try to find it and I was reading that robin Williams had it and I see similarities over the last 4 yrs in regard to some sporadic delusions that my father has experienced and we didn’t realise were apart of this disease !

Thank u again. For your time I really appreciate ur reply and willl try to find the article

Sincerely

Wayakka

[jeffreyn in reply to Wayakka]

If you click on the blue "link" it will take you to the article.

[Wayakka in reply to jeffreyn]

Aww ok th n thanks so much appreciate it a lot

[Wayakka in reply to jeffreyn]

Thank you so much I have read it and I can totally relate to my fathers paranoia I’ve the last 4 yrs as that was his worst and first symptom to present its self but I didn’t know it was this or they were so real for him it’s so sad and a horrible disease he seems to in and out like she says and also he didn’t know what was happening like a child in some ways so this helps me understand him a lot and how to handle the future of his condition

Thank you again no words but a lot of gratitude for sharing with me

[falcon946]

My aunt also went from a Parkinson diagnosis to LBD very quickly. Somewhere they discussed Alzheimer's but now say those issues were due to the LBD. She would get lost driving and one time drove the wrong way on an off-ramp so that finished her driving career. She also fell a lot at the beginning. I know she takes an adhd med for attention and possibly helping the delusions but also walking issues etc., although at this stage she doesn't really move. She needs a lift to move her from wheelchair to chair to bed etc. Mostly she sleeps now but I know she is still there as she managed to tell me she remembers. So I echo everyone above that your dad knows and appreciates what you are doing.

Have you seen the posts regarding high dose Thiamine? 4g per day plus supplements for the other Vitamins (B complex, high dose D, C etc. ) I know some PD patients are having a lot of success with this and micro-dose lithium. You might search the recent posts and discuss with your neurologist. Take care.

[Bretray]

It is very very difficult. My mom is about 7 years past her LBD diagnosis. I would consider trying something radical now to reverse the course. Once they can no longer swallow new treatments become very difficult to administer. Things to read about ASAP are tasigna, google Georgetown study, mannitol, cbd oil, coffee. Message me directly if you want to chat.

[Bretray]

Also I should say welcome to the club and I extend my very heartfelt sympathy.