Re: leg pain

[Guest guest]

I had a friend who said his legs were in so much pain (no lewybody, just regular

person) and he had to go in for surgery and it had to do with the blood flow in

his legs, wish I knew a more tech. name for it.. This may not be LBD related

and MD should probably check it.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

leg pain

[Guest guest]

dad had peripheral vasuclar disease i believe it was called where the

blood flowed good to the legs but was difficult in leaving the legs, causing

pain and swelling

hugs sharon m pensacola, florida

daughter/caregiver of Leonard, symptomatic from the early 1990's. we moved

in with him 1/19/03. diagnosed 5/04 broke hip ball 7/5/05, asp pneumonia

and lung blood clot 7/14/05, asp pneumonia and uti 8/05, passed away 9/25/05

-- leg pain

[Guest guest]

Hi, Eli,

I am sorry that your Dad is having leg pain. I am not sure if this will

help, but I wanted to tell you about it just in case. We recently withdrew

most

medication from my Dad as he is in his final days. We kept him on Seroquel,

but removed Sinemet, Aricept, and Namenda. The only difference I noticed was

Dad developed a horrific case of Restless Leg Syndrome. His leg movements

would almost throw him out of bed. I do not know if his legs hurt because he

is unable to communicate that to me, but I would think it did hurt. The

neurologist told me to put him back on the Sinemet. I did immediately and it

worked like a charm. Dad's legs have been mostly calm since, and he does not

seem to be in pain as best I can tell. Apparently, the Sinemet had been

controlling the RLS and we did not know until it was withdrawn. I am thinking

of

you and your dad. Please let us know what works for him.

Hugs,

Piper

[Guest guest]

thanx Piper!

>

> Hi, Eli,

>

> I am sorry that your Dad is having leg pain. I am not sure if this will

> help, but I wanted to tell you about it just in case. We

> recently withdrew most

> medication from my Dad as he is in his final days. We kept him on

> Seroquel,

> but removed Sinemet, Aricept, and Namenda. The only difference I noticed

> was

> Dad developed a horrific case of Restless Leg Syndrome. His leg movements

> would almost throw him out of bed. I do not know if his legs hurt

> because he

> is unable to communicate that to me, but I would think it did hurt. The

> neurologist told me to put him back on the Sinemet. I did immediately

> and it

> worked like a charm. Dad's legs have been mostly calm since, and he does

> not

> seem to be in pain as best I can tell. Apparently, the Sinemet had been

> controlling the RLS and we did not know until it was withdrawn. I am

> thinking of

> you and your dad. Please let us know what works for him.

>

> Hugs,

>

> Piper

>

>

>

[Guest guest]

My dad had considerable leg pain and took sinemet for a while, which

helped. But he had such severe side effects that after two tries with

sinemet, we looked for non-medicine therapy, instead.

It turns out that massage therapy works extremely well for him. We

have two therapists (one in the family, lucky us) that make house

calls. We are able to swing one or two sessions most weeks. He has

tremendous relief from rigidity and pain, better than sinemet by far.

His legs used to spasm, and that has completely stopped.

Hope that is something you have access to and can try.

Cece

>

> >

> >

> >

> >

> >

>

>

>

[Guest guest]

Let me add my two cents. My mom has PVD (Peripheal Vascular Disease)

more in her left leg than her right. Six weeks ago, she'd wake up

every two hours or so to shake her legs, stomp, massage, etc. I got a

referral to a vascular surgeon, who actually would rather try some non

invasive interventions first. (Mom is on Aricept and Namenda with non-

LBD dementia, her spouse of 65 years (my dad) died from his LBD last

April and she's a charter member of the So Florida LBD Support Group

and was one of the oldest members of the audience at 89 at our

symposium that was taped for the DVD.) Anyway, her doc prescribed

Nitroglycerin patchs (.1 mg strength) which we rotate on her left leg

only for 24 hours at a time. Each evening we take off the old patch

and put on a new one opposite where the last three went - sort of like

inner knee to outer ankle to outer knee to inner ankle pattern. The

nitro patches have finally increased the circulation enough so she is

now sleeping through the night with no cramping or pain. So, if poor

circulation is part of the reason for your LO's leg pain, ask your doc

about nitro patches. It sure did work for Mom. Cyberhugs, Carol