Re: Wheelchairs

[Guest guest]

HI ,

I would advise you to purchase a wheel chair that allows your mom's legs to be

lifted up and straightened out from time to time. Eventually, our lo's will

become to stiff to move/bend their legs but my mother's 2nd wheel chair (the

first one was one for transportation that collapsed) did not allow for this and

the PTsaid that mom's legs were contracted far sooner than they should have

been.

Best,

Courage

[Guest guest]

Hi -

I am sorry your Mum has come to the point where she needs a wheelchair.

Probably a standard model will work well for her. My Dad had a standard one.

We rarely used the foot props.. Dad like to pedal himself around the house. It

not only gave him a little independence, but it preserved some of his muscle

tone and also, most important prevented falls. As he got sicker, Dad was still

quite capable of undoing any latch on the seat belt. As a solution, we got a

lap belt and secured it in the back out of his reach. My Mother is very petite

and also has a wheelchair. She has a junior size chair, certainly would not

fit me! It also has balloon (inflatable) tires, which makes for easy pushing

and a comforable ride. It is easier to lift in and our of the car. To tell you

the truth, I liked Dad just as well compared to Mom's deluxe model. I would

suggest you check the resale or thrift shops in your area. I am surprised that

the nursing home dosen't have any. Also, put the word out among your friends

that you need a W/C for your Mum.

As far as getting out of bed goes, my suggestion is to have someone such as a

physical therapist train your Mom how to get out of bed safely and easily. Dad

would roll on his side, drop his legs over the side of the bed, and then use

his elbow to shove himself up to a sitting position. From there he would sit on

the side of the bed for awhile to get himself back together and from there he

would transfer with help into the wheelchair, which we had at the bedside. We

never allowed Dad to do any of this activity alone. Towards the end of his

life, he needed much help in getting out of bed, but he did his best to make it

as easiest on us as possible.

Hugs,

Gerry

Wilmington, De.

Daughter and caregiver of Dick Deverell. who passed away on 9/11/05 after a more

than 4 yr. battle with LBD

Wheelchairs

Hi All

I haven't posted for several months but I have been reading most of

the e-mails. This nasty desease has been progressing in Mum and we

have reached a stage where her NH is recommending a wheelchair. Mum's

mobility is much worse and she has fallen several times. 90 percent

of the time Mum cannot manage to get out of bed or her chair but 10

percent of the time she will have a short burst of mobility that gets

her up and she then trips over her feet.

The Nursing supervisor is going to arrange for someone to come and

access Mum and give us advise on what sort of chair etc. but I

wondered if you experienced people had any advise, caveats etc. to

offer. I suspect that Mum's wheelchair needs will be constantly

changing from here on in. Even though the Government pays 75% of the

cost of the wheelchair I don't think we want to be trading it in every

couple of months. I don't also think we necessarily need a new

wheelchair. There must be all kinds of places that have used

wheelchairs - I'm just not too sure where to look.

We have taken Mum off the Seroquel so she is only on Aricept for the

LBD now. Mum sleeps off and on most of the day. I know Mum has lost

weight - she has difficulty eating even if someone is helping her. I

thinks she is worried that she will choke on something. It is really

tough to see this once vibrant woman just shrivelling up before my eyes.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon, Seroquel

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05

[Guest guest]

Hi ,

Not too sure where your mother fits into the wheelchair scene but I suspect her

legs and

arms would still be able to help reposition her in a chair. If so, do not go

into the tilt

wheelchair with leg rests in the back. That totally eliminates repositioning of

legs, ability

to reposition and " walk " the chair, loss of mobility. I found with Mom there

were 2 levels

of chair, that which enabled leg movement, and then the tilt chair which was

more for

those who needed repositioning because they couldn't do it on their own. She

should also

have a head rest to lean back on when she falls asleep, if her position goes

that way! So

many of our LOs have heads that fall forward and that leads us to think about

the tilt

chair. They are both custom built. With the OT, changes can be made as needed

until an

upgrade is indicated. In my opinion and from experience 2 chairs should do it

if LBD takes

her to the end.

I donated both of Mom's wheelchairs to her NH so you could start there with an

enquiry as

to used chairs. You will want it custom formed by an OT. I can't imagine being

confined

to a chair not built for me and not being able to express my discomfort!!!

Oh , I've been there and know what you are going through.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> Hi All

>

> I haven't posted for several months but I have been reading most of

> the e-mails. This nasty desease has been progressing in Mum and we

> have reached a stage where her NH is recommending a wheelchair. Mum's

> mobility is much worse and she has fallen several times. 90 percent

> of the time Mum cannot manage to get out of bed or her chair but 10

> percent of the time she will have a short burst of mobility that gets

> her up and she then trips over her feet.

>

> The Nursing supervisor is going to arrange for someone to come and

> access Mum and give us advise on what sort of chair etc. but I

> wondered if you experienced people had any advise, caveats etc. to

> offer. I suspect that Mum's wheelchair needs will be constantly

> changing from here on in. Even though the Government pays 75% of the

> cost of the wheelchair I don't think we want to be trading it in every

> couple of months. I don't also think we necessarily need a new

> wheelchair. There must be all kinds of places that have used

> wheelchairs - I'm just not too sure where to look.

>

> We have taken Mum off the Seroquel so she is only on Aricept for the

> LBD now. Mum sleeps off and on most of the day. I know Mum has lost

> weight - she has difficulty eating even if someone is helping her. I

> thinks she is worried that she will choke on something. It is really

> tough to see this once vibrant woman just shrivelling up before my eyes.

>

> from Cresswell ON Canada

> Long distance CG to Margaret (Mum) aged 76

> Lives at The Briton House, Memory Floor, Toronto

> DX Early Onset AD & PD approx. 2002

> DX LBD 01/2005

> Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

> Was on: Sinemet, Excelon, Seroquel

> Was given Risperdal in NH for a few weeks (Feb '05)

> Haldol several times in Hospital Jan 05

>

[Guest guest]

,

Here in the States, Medicare pays for the wheel chair if the MD prescribes it.

It is rented by the month so trading it in is no problem.

I don't know if you have Senior Centers over there, but they do accumulate used

chairs.

I got a " transport " chair which was just used to move mom. She couldn't turn

the wheels to move herself, I pushed her. Later she was in a chair from the nh

and she " walked " herself around in it.

I started from the beginning with a small leather pillow that went across the

front of the chair so she couldn't stand up. The nh and the gov didn't like me

" restraining " her, but I did anyway because I wasn't always at the nh and the

aids didn't watch her. She didn't try and stand up. After while she didn't

even like it when someone removed the pillow as it was her safety. I never had

head and neck problems, but Courage did. You might want to talk to her too.

Hope this helps.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Wheelchairs

Hi ,

Not too sure where your mother fits into the wheelchair scene but I suspect her

legs and

arms would still be able to help reposition her in a chair. If so, do not go

into the tilt

wheelchair with leg rests in the back. That totally eliminates repositioning of

legs, ability

to reposition and " walk " the chair, loss of mobility. I found with Mom there

were 2 levels

of chair, that which enabled leg movement, and then the tilt chair which was

more for

those who needed repositioning because they couldn't do it on their own. She

should also

have a head rest to lean back on when she falls asleep, if her position goes

that way! So

many of our LOs have heads that fall forward and that leads us to think about

the tilt

chair. They are both custom built. With the OT, changes can be made as needed

until an

upgrade is indicated. In my opinion and from experience 2 chairs should do it

if LBD takes

her to the end.

I donated both of Mom's wheelchairs to her NH so you could start there with an

enquiry as

to used chairs. You will want it custom formed by an OT. I can't imagine being

confined

to a chair not built for me and not being able to express my discomfort!!!

Oh , I've been there and know what you are going through.

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> Hi All

>

> I haven't posted for several months but I have been reading most of

> the e-mails. This nasty desease has been progressing in Mum and we

> have reached a stage where her NH is recommending a wheelchair. Mum's

> mobility is much worse and she has fallen several times. 90 percent

> of the time Mum cannot manage to get out of bed or her chair but 10

> percent of the time she will have a short burst of mobility that gets

> her up and she then trips over her feet.

>

> The Nursing supervisor is going to arrange for someone to come and

> access Mum and give us advise on what sort of chair etc. but I

> wondered if you experienced people had any advise, caveats etc. to

> offer. I suspect that Mum's wheelchair needs will be constantly

> changing from here on in. Even though the Government pays 75% of the

> cost of the wheelchair I don't think we want to be trading it in every

> couple of months. I don't also think we necessarily need a new

> wheelchair. There must be all kinds of places that have used

> wheelchairs - I'm just not too sure where to look.

>

> We have taken Mum off the Seroquel so she is only on Aricept for the

> LBD now. Mum sleeps off and on most of the day. I know Mum has lost

> weight - she has difficulty eating even if someone is helping her. I

> thinks she is worried that she will choke on something. It is really

> tough to see this once vibrant woman just shrivelling up before my eyes.

>

> from Cresswell ON Canada

> Long distance CG to Margaret (Mum) aged 76

> Lives at The Briton House, Memory Floor, Toronto

> DX Early Onset AD & PD approx. 2002

> DX LBD 01/2005

> Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

> Was on: Sinemet, Excelon, Seroquel

> Was given Risperdal in NH for a few weeks (Feb '05)

> Haldol several times in Hospital Jan 05

>

[Guest guest]

I found an almost new transport chair at a thrift store, and paid only

fifteen dollars for it. My husband wanted to get rid of it many times and I

wouldn't let him. I have gotten him to ER with the chair out our door and to the

car, and use the ER chair to get him from the car. We live one mile from the

hospital, and I can usually judge how severe his chest pains are and whether to

take him or call an ambulance. When I take him, I save from 4 to 500 dollars,

and a lot of time.

I agree with Sharon. Shop where people give away, donate, or sell cheaply.

Imogene

In a message dated 10/27/2006 11:24:24 PM Central Daylight Time,

LadySmilingAtU2@... writes:

hello sarah and ed,

i am not sure how it is done in canada, but i have a few suggestions, maybe

one will help you.

many nursing homes can order wheelchairs for your loved one, that can be

done thru the occupational or physical thereapy depts.

also many thrift stores-- goodwill, salvation army, etc,

the red cross maybe able to help you.

also put an ad in the classfieds, you may have someone who is willing to

give, sell, one to you.

how about fleamarkets or yard sales, but i guess it s the wrong time of year

for it in canada.

i just wanted to suggest a few, hope something works hugs, sharon

[Guest guest]

The wheelchair we had for my Mom was a manual (no motorize) chair that had a

wide seat.

The reason for the wide seat was for comfort. We got an egg crate pillow to

put on the bottom for more comfort. We found that sitting in the chair for

long periods of time made her bottom sore. We got the chair from hospice at no

charge. Its the only chair we got.

It was a used chair so I don't see why you would have to get a new one

unless you wanted one. Even though the chair was sanitized by the company that

issued it I went over it with my own sanitizer.

Just my opinion.

Hugs from Florida

Jacqui

[Guest guest]

hello sarah and ed,

i am not sure how it is done in canada, but i have a few suggestions, maybe one

will help you.

many nursing homes can order wheelchairs for your loved one, that can be done

thru the occupational or physical thereapy depts.

also many thrift stores-- goodwill, salvation army, etc,

the red cross maybe able to help you.

also put an ad in the classfieds, you may have someone who is willing to give,

sell, one to you.

how about fleamarkets or yard sales, but i guess it s the wrong time of year for

it in canada.

i just wanted to suggest a few, hope something works hugs, sharon

---- /Ed wrote:

Hi All

I haven't posted for several months but I have been reading most of

the e-mails. This nasty desease has been progressing in Mum and we

have reached a stage where her NH is recommending a wheelchair. Mum's

mobility is much worse and she has fallen several times. 90 percent

of the time Mum cannot manage to get out of bed or her chair but 10

percent of the time she will have a short burst of mobility that gets

her up and she then trips over her feet.

The Nursing supervisor is going to arrange for someone to come and

access Mum and give us advise on what sort of chair etc. but I

wondered if you experienced people had any advise, caveats etc. to

offer. I suspect that Mum's wheelchair needs will be constantly

changing from here on in. Even though the Government pays 75% of the

cost of the wheelchair I don't think we want to be trading it in every

couple of months. I don't also think we necessarily need a new

wheelchair. There must be all kinds of places that have used

wheelchairs - I'm just not too sure where to look.

We have taken Mum off the Seroquel so she is only on Aricept for the

LBD now. Mum sleeps off and on most of the day. I know Mum has lost

weight - she has difficulty eating even if someone is helping her. I

thinks she is worried that she will choke on something. It is really

tough to see this once vibrant woman just shrivelling up before my eyes.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon, Seroquel

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Hi ... maybe it's different at your mom's nursing home... but my

mom didn't have to buy a wheelchair at all... The NH provided her with

one when she was first admitted. She was in a jerri chair for awhile

and then upgraded to a regular wheelchair. They provided a pad with a

lip on the chair to make it a tad more difficult to get out of the

chair (although she did try and get up once and went into the ER b/c of

it) -- but it was much more manageable than the jerri chair -- so

didn't get rid of the chair after the episode with the ER. You may also

inquire about The Merry Chair http://www.merrywalker.com/ maybe there's

one available to use at the NH? But, again, make sure they really want

you to buy a chair b/c at least w/ my mom -- we didn't buy a chair...

PS -- BTW I was hoping my mom would be able to wheel herself around --

and I tried teaching her how to move around using her arms -- she would

get it only when I was showing her, the rest of the time she didn't

remember that she could move around by herself (like the other

residents)

[Guest guest]

,

I didn't have to buy Mom a wheel chair while she was in the nh. They provided

one. She could wheel it with her hands, but she could move her feet and walk

around very well. The leg rests were removed from the chair and she just

" walked " it around.

Like " s mom, she could learn to use her hands, but she did fine.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: Wheelchairs

Hi ... maybe it's different at your mom's nursing home... but my

mom didn't have to buy a wheelchair at all... The NH provided her with

one when she was first admitted. She was in a jerri chair for awhile

and then upgraded to a regular wheelchair. They provided a pad with a

lip on the chair to make it a tad more difficult to get out of the

chair (although she did try and get up once and went into the ER b/c of

it) -- but it was much more manageable than the jerri chair -- so

didn't get rid of the chair after the episode with the ER. You may also

inquire about The Merry Chair http://www.merrywalker.com/ maybe there's

one available to use at the NH? But, again, make sure they really want

you to buy a chair b/c at least w/ my mom -- we didn't buy a chair...

PS -- BTW I was hoping my mom would be able to wheel herself around --

and I tried teaching her how to move around using her arms -- she would

get it only when I was showing her, the rest of the time she didn't

remember that she could move around by herself (like the other

residents)

[Guest guest]

One of the ladies in the nursing home where I volunteer has LBD with

some mobility left and they've given her a wheelchair/walker

combination so she can walk when she feels able, and still be safe

(whole thing is " enclosed " by a rail) and use it as a wheelchair when

she is not strong.

Diane

>

> Hi All

>

> I haven't posted for several months but I have been reading most of

> the e-mails. This nasty desease has been progressing in Mum and we

> have reached a stage where her NH is recommending a wheelchair. Mum's

> mobility is much worse and she has fallen several times. 90 percent

> of the time Mum cannot manage to get out of bed or her chair but 10

> percent of the time she will have a short burst of mobility that gets

> her up and she then trips over her feet.

>

> The Nursing supervisor is going to arrange for someone to come and

> access Mum and give us advise on what sort of chair etc. but I

> wondered if you experienced people had any advise, caveats etc. to

> offer. I suspect that Mum's wheelchair needs will be constantly

> changing from here on in. Even though the Government pays 75% of the

> cost of the wheelchair I don't think we want to be trading it in every

> couple of months. I don't also think we necessarily need a new

> wheelchair. There must be all kinds of places that have used

> wheelchairs - I'm just not too sure where to look.

>

[Guest guest]

Hi

The physiotherapist assessed mom and had someone from Therapy Supplies come

and order the wheelchair that was especially sized for her. Because of the

awful bedsore she had they also reccommended an special air pillow seat. The

chair " tilts " and this is handy when I lift her up to reposition her although I

rarely put her in the tilt position as it seems to me, that that would put the

pressure exactly where the bedsore is.

Be wary that she has her legs sometimes straight and sometimes bent. My mom

got contracted leg muscles due to lack of physio and she never walked after her

hip surgery. I can't put her in my car, because she can't stand and requires 2

people to lift her or risk as skin tear. I know Courage had the same problem

with her mom and contracted leg muscles. The tilt chairs are heavier and not

good for transport, but I push my mom to the mall anyway because that is the

only way I can take her out unless I call ahead for wheeltrans.

Good Luck. I have been thinking of you.

Kath in Toronto

/Ed wrote:

Hi All

I haven't posted for several months but I have been reading most of

the e-mails. This nasty desease has been progressing in Mum and we

have reached a stage where her NH is recommending a wheelchair. Mum's

mobility is much worse and she has fallen several times. 90 percent

of the time Mum cannot manage to get out of bed or her chair but 10

percent of the time she will have a short burst of mobility that gets

her up and she then trips over her feet.

The Nursing supervisor is going to arrange for someone to come and

access Mum and give us advise on what sort of chair etc. but I

wondered if you experienced people had any advise, caveats etc. to

offer. I suspect that Mum's wheelchair needs will be constantly

changing from here on in. Even though the Government pays 75% of the

cost of the wheelchair I don't think we want to be trading it in every

couple of months. I don't also think we necessarily need a new

wheelchair. There must be all kinds of places that have used

wheelchairs - I'm just not too sure where to look.

We have taken Mum off the Seroquel so she is only on Aricept for the

LBD now. Mum sleeps off and on most of the day. I know Mum has lost

weight - she has difficulty eating even if someone is helping her. I

thinks she is worried that she will choke on something. It is really

tough to see this once vibrant woman just shrivelling up before my eyes.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon, Seroquel

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05

[Guest guest]

Kath,

Its so nice to hear from you again. Hope all is well with you and yours.

Courage

Re: Wheelchairs

Hi

The physiotherapist assessed mom and had someone from Therapy Supplies come

and order the wheelchair that was especially sized for her. Because of the awful

bedsore she had they also reccommended an special air pillow seat. The chair

" tilts " and this is handy when I lift her up to reposition her although I rarely

put her in the tilt position as it seems to me, that that would put the pressure

exactly where the bedsore is.

Be wary that she has her legs sometimes straight and sometimes bent. My mom

got contracted leg muscles due to lack of physio and she never walked after her

hip surgery. I can't put her in my car, because she can't stand and requires 2

people to lift her or risk as skin tear. I know Courage had the same problem

with her mom and contracted leg muscles. The tilt chairs are heavier and not

good for transport, but I push my mom to the mall anyway because that is the

only way I can take her out unless I call ahead for wheeltrans.

Good Luck. I have been thinking of you.

Kath in Toronto

/Ed wrote:

Hi All

I haven't posted for several months but I have been reading most of

the e-mails. This nasty desease has been progressing in Mum and we

have reached a stage where her NH is recommending a wheelchair. Mum's

mobility is much worse and she has fallen several times. 90 percent

of the time Mum cannot manage to get out of bed or her chair but 10

percent of the time she will have a short burst of mobility that gets

her up and she then trips over her feet.

The Nursing supervisor is going to arrange for someone to come and

access Mum and give us advise on what sort of chair etc. but I

wondered if you experienced people had any advise, caveats etc. to

offer. I suspect that Mum's wheelchair needs will be constantly

changing from here on in. Even though the Government pays 75% of the

cost of the wheelchair I don't think we want to be trading it in every

couple of months. I don't also think we necessarily need a new

wheelchair. There must be all kinds of places that have used

wheelchairs - I'm just not too sure where to look.

We have taken Mum off the Seroquel so she is only on Aricept for the

LBD now. Mum sleeps off and on most of the day. I know Mum has lost

weight - she has difficulty eating even if someone is helping her. I

thinks she is worried that she will choke on something. It is really

tough to see this once vibrant woman just shrivelling up before my eyes.

from Cresswell ON Canada

Long distance CG to Margaret (Mum) aged 76

Lives at The Briton House, Memory Floor, Toronto

DX Early Onset AD & PD approx. 2002

DX LBD 01/2005

Current Meds: Aricept, LD ASA, Levothyroxin, Calcium Suppl.

Was on: Sinemet, Excelon, Seroquel

Was given Risperdal in NH for a few weeks (Feb '05)

Haldol several times in Hospital Jan 05