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 New Diagnosed 
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Diane,
There is such a need for support groups in all area's there are only a few up and running, if and when you need info on getting one started please contact me I can put you in touch with the right people, Now are you aware there is an online cargivers group for LB, if not and you are interested I can get you hooked up there too.I am just full of surprises aren't I ! :shock:
Thanks for the compliments, it makes my heart feel like I am doing some good here! There are no thanks needed but I do except them ! :D


Thu Oct 05, 2006 10:15 pm

Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post 
Irene,
I just sent you an IM and an Email....I put you on my buddy list and low and behold there you were...
Diane

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 10:31 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
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Irene,
I don't know of the group online. I have tried to find one. I am very curious...thanks...

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Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Thu Oct 05, 2006 10:33 pm
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post support group
Hey Diane,
If you do start a support group, let us know. Sometimes I think I get as much support as information on this site. Bless Irene.
Sallyann


Fri Oct 06, 2006 6:39 pm
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Ok I am not sure what's going on here at the forums but I haven't been able to post now for few days so I will again try this, for a caregivers support group for LBD go to:
www.lewybodydementia.org
Just follow instructions


Sat Oct 07, 2006 10:19 am
Post 
I should have also written click on caregivers
and the info will come up!


Sat Oct 07, 2006 12:32 pm

Joined: Fri Jul 21, 2006 1:05 pm
Posts: 51
Location: Houston, TX
Post 
Hello All,

My Mom's appt. with the geriatric neurologist was Monday. They did the standard Mini-Mental tests and others that lasted about 3 hours. Ruled out AD, but said they could understand why her regular neurologist just said "Some sort of dementia", because her symptoms are not really typical of any one sort. They are going to send her for a neuro-psych exam on Tuesday next week, which I understand pretty much lasts all day. Also they are going to send her next week for a PET Scan, which this DR. says can identify Lewy Bodies if they are there. I thought I had read somewhere that the PET and SPECT scans were only used in a research setting. Guess not. I have to provide her last MRI and CT scans, and along with the PET and the other tests run, he says they can DX with 90% accuracy (the only 100% is with a autopsy). His initial opinion is that she will DX with either Frontotemporal or Vascular Dementia, with Lewy Bodies. No Parkinson symptoms as yet, but he did say they could still come along. In my wildest dreams I never thought I would become this knowledgable about dementia! :!: Any way, wish us luck. I'll be back to update. And thank you all for all the information. I don't know where we would be in this search for a DX without the info I have found on this site.
Has any one else had a PET Scan that identified Lewy Bodies?
Jennifer


Wed Oct 11, 2006 4:34 pm
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Hi Jennifer,
Wow I think that's great that they are doing a pet scan I was told just a yr ago that they were only done for research so this news is encouraging and if they are willing to do it why not? I read a clipping a while back saying that the pet scan does identify the Lewy Body cells and at least at that point you will know what you are dealing with!
I wish you much luck with this and Please do come back and let us know! I then can let my other groups and forums know this is an option for their LO's, it's promising! :)


Thu Oct 12, 2006 5:41 pm

Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post pet
Let me know how it goes with the pet scan.
My mom will be getting her 2nd opinion in boston. I am hoping maybe they offer pet scan too.


Sun Oct 15, 2006 6:47 pm
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Hi Maureen,
I know you will asking if they don't offer, Sometimes we have to promt them to do certain tests. I am anxious to hear if they will do it or even consider it! Good luck with this 2nd opinion, Let us know the outcome. :)


Sun Oct 15, 2006 7:49 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post Diane.....
Hi,
Got a message from someone from a LBD support site and they wanted to know if I was Sallyann. Wanted to see if it was you. She said her name was Diane, but she's from Boston. So I think I might be e-mailing someone I thought was you :? Is it you? :lol: What a spaz, I am pouring my heart out to total strangers.
Sallyann


Tue Oct 17, 2006 1:51 am
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Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post another day and questions
Another day in our world. I took my mom into her doctor last friday and she was told she can't drive anymore :cry: never mind I have been telling her this for a while. I feel kind of bad because this is kind of another nail in the coffin for her. She has lost her a big part of her independance. She will be getting a scooter and I really hope this helps her regain some of it although the physical therapist is worried her judgement isn't quite what it should be :o and will she be able to use it safely? will she then never try to walk etc.... I have no idea. Time will tell. I can say that it seems far more dangerous for her to fall evertime we go out the door.
My mom's PCP has nobody else with LBD in her practice (at least no one who she knows about) She had no answers and really can only help me with filling out paperwork doing referrals and maintaing the rest of her. At least that is how I see it, and I am ok with it JUst tell me the rules of the game so I know how to play!!!!!!!!!!!!
She has been on cinimet for one month now and she is only slightly better with her gait. She shuffles and generally walks on the balls of her feet and bent slightly at the waist.
She has an appointment at Brigham and Womens in boston in January. I can't wait :)
Anyone out there answer a question? I have such a hard time with knowing when to push and when to lower my expectations.
I try to push her with daily household tasks (making the bed, doing the dishes etc..)
I never know am I being mean or not. She is really sensitive and that has always been the case I think the LBD has increased the sensitivity and certainly caused her to be more frustrated much more quickly. I sometimes feel like i live with an eight year old.
She has had a fairly rapid decline over the past few months. I think her symptoms are mostly motor. She loves to read and always has a book. She seems to understands what she is reading because she tells me the plot and the charectors and is always on target. Anyone have any advice on what to ask the "specialist"?


Wed Oct 18, 2006 12:47 pm
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Joined: Sun Oct 01, 2006 1:16 am
Posts: 5
Post 
First, by "scooter" do you mean one of those little motorized things that they keep pushing on TV? I wouldn't let my LO out anywhere in one of those by herself, but they often have such available in many grocery or department stores and she was able to use them happily, with a little help, for some months. Kept her able to accompany me when shopping for a llittle while longer, which was a good thing. At this point, she couldn't use the "scooter" in the house - keeps bumping her walker into door frames, etc. So I'd bet that a scooter wouldn't last long before she couldn't use it. I've got a collection now of canes, 4-pronged canes, walker, walker with wheels, and a wheelchair. (While she can still sorta walk, she's so slow that the wheel-chair is necessary to get to any appointment.) All of these were useful for a few months before going down to the next one.

We have 2 places in Atlanta that "officially" do drivers tests - wasn't clear if the dr.'s "No" was enough. You should be able to find one thru the Alzheimer's association or any hospital unit that deals with patients who have had car accidents, They give a couple of hours worth of testing and can give a fairly definitive report. I think the ones here charge about $60.

One of the first things I noted about my LO 8 years ago was that she had stopped doing many of "her" household tasks. This frustrated the bejeebus out of me and I spent much time being very irritable before I realized she just couldn't. I'd suggest you stop having any expectations for her routinely performing anything, but once or twice a day ask her to do something familiar and routine that you hope is still in her capacity. If she doesn't or can't, just let it be. I think there's enough wanting to please and being able to do things left in her so if she can, she will. The only things I push and insist on are those important for health - drinking water, having a few more bites, walking, etc.


Fri Oct 20, 2006 5:05 pm
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Dear Joen,
I have to agree with you on the scooter issue with the LBD most motor skills are not intact well enough to get around in one of these , I did come close to getting one for my husband but watching him use it in places like a walmart I could see he couldn't do it, My husband was in a wheelchair for the last yr or so and in the house we had what was called a companion chair just like a wheeelchair but a little smaller in the wheels and easier to get around the house and yes we went through all the walkers and canes and anything to help him get around and most were used incorrectly and we had many many falls and the falls only stopped once he went into the wheelchair or at lease they were few and far in between. You don't say who your LO is but I agree once we come to terms with the disease and not expect too much from the patient the better caregivers we become. they are so very limited with LBD.
Goos luck! :)


Sat Oct 21, 2006 8:46 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
Post wheelchair
We just purchased a small, lightweight wheel chair. My LO does not even have the ability to do small organized tasks. Can fold towels,( somewhat)and when she tries to put silverware away, it's totally mixed up, knives with spoons, etc. She is ambulatory, but wears out very quickly. We were mostly homebound with her, someone always had to be with her. Since the wheelchair, I feel like I have been let out of jail. We have taken her somewhere every weekend since we got it. She loves children and so enjoys people watching and the nice weather. It was a good purchase worth 100 times what it cost. I know she would never have the coordination to work a scooter. I have visions of her flying down the street wondering what the heck was going on. :shock: i think many people are in denial about the effect the illness has on their LOs. I am shocked about how many people with this disease still drive cars. Or live alone. My Mom burned more pot and pans than I could count before our Dad made her stop cooking. I think we all need to take a long look at the life skills of our LOs and protect them from the many dangers of daily living.


Sat Oct 21, 2006 10:57 pm
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