Re: personal question for sma males

[Guest guest]

Betty Lou,

Hi. I wanted to get back with you about what we have found has worked well

for my son who is 10.5 years old. I have found that he is too big now to

move in and out for urine, and actually has been for the past few years as he

weighs 91 lbs. I buy athletic pants with side snaps and also have had a

friend make elastic waist jean and twill pants with a snap tape from mid-thigh

to

midthigh in the crotch area of his pants. We have him in boxers which makes

access easier as well. I either unsnap the side snaps down one leg for access or

unsnap the crotch area on his other pants while he is in his chair. I bought

the angled neck 8oz baby bottles which work well as a mini urinal while he is

in his chair that fits easily between his legs, they have a screw on cap to

prevent accidental spills if there is not a bathroom or outside emptying

location

nearby. This has worked great for for the past 4 years. I would be

happy to share pants patterns, actually I have 4 pairs of adapted pants he has

outgrown that are about a size 10, that I am looking for a home for. Also

's chair has a tilt and recline feature which helps when he is using his

urinal. Let me know if you want more specific info, or might be interested in

the

pants.

Ronna

[Guest guest]

Bettylou,

My son is 23 years old and has type 2; we've been dealing with this a

long time. To use a urinal...Danny reclines his wheelchair way back, I

slide his hips forward (slow and careful to not pull him out of

chair), and spread his legs apart a bit. If he has shorts on, I pull

open one leg opening for access of the urinal. If he has pants on, I

pull the elastic waistband out enough in front for access of the

urinal that way. Sometimes, his pants or shorts will slip down his

butt a little bit in the back but usually not. If they do, it's pretty

easy to pull them back up, since they only go down a bit. The trick is

that he only wears pants or shorts with elastic waist, and they are

actually a size bigger than he needs. His pants and shorts are soft,

cotton/knit material...never denim, of stiff material. And, he doesn't

wear underwear anymore cuz they get in the way, bunch up, and get

uncomfortable. I know they make boy's pants with extra long fly's,

with velcro, etc. on some of the disabled clothing sites if that

helps. After he's done with urinal, I tilt his chair, recline him back

up to sitting position, and scoot him up to proper position in the w/c

by placing my hands under each hip. When he was in elementary and

middle school, the school nurse used to help him using this same

method. Feel free to email me directly if you have any other questions

I can maybe help with.

Hope this helps,

>

> Dear Guys (and caregivers of males),

> I have a kind of personal question to ask. My son Bernie - type 2, sits

> well but doesn't weight bear at all - is almost 10, and we are

wondering

> about long term arrangements for toileting - especially as he gets a

bit

> heavier - at home and school. Currently we lift him from his chair to a

> bed or padded table and let him use a urinal. (He has a bm every

morning

> on a commode at home and doesn't usually need to worry about that at

> school. So bm is not an issue, just urination.)

> I like that he is able to stretch out on the padded table or bed a few

> times a day. But he's getting a little heavy for 1 person to lift

safely

> - about 50 pounds - and we are thinking about bathroom renovations at

> home and school, and whether it's time to get a lift.

> A relative suggested to me that as he gets older he should use a condom

> catheter at school. This sounds convenient but uncomfortable. She has

> also suggested that he needs to be circumcised for better hygiene as he

> gets older.

> Trying to pull down pants while he's seated in his chair to let him

> urinate is not bad - but it's really hard to get pants back up.

> May I ask how you guys handle this situation? Please feel free to email

> me off list if you are more comfortable - eross@...

>

> Many thanks for your assistance with this problem,

> bettylou

>

[Guest guest]

Sorry, that's eross@...

thanks

bl

Bettylou Ross wrote:

> Dear Guys (and caregivers of males),

> I have a kind of personal question to ask. My son Bernie - type 2, sits

> well but doesn't weight bear at all - is almost 10, and we are wondering

> about long term arrangements for toileting - especially as he gets a bit

> heavier - at home and school. Currently we lift him from his chair to a

> bed or padded table and let him use a urinal. (He has a bm every morning

> on a commode at home and doesn't usually need to worry about that at

> school. So bm is not an issue, just urination.)

> I like that he is able to stretch out on the padded table or bed a few

> times a day. But he's getting a little heavy for 1 person to lift safely

> - about 50 pounds - and we are thinking about bathroom renovations at

> home and school, and whether it's time to get a lift.

> A relative suggested to me that as he gets older he should use a condom

> catheter at school. This sounds convenient but uncomfortable. She has

> also suggested that he needs to be circumcised for better hygiene as he

> gets older.

> Trying to pull down pants while he's seated in his chair to let him

> urinate is not bad - but it's really hard to get pants back up.

> May I ask how you guys handle this situation? Please feel free to email

> me off list if you are more comfortable - eross@...

>

> Many thanks for your assistance with this problem,

> bettylou

>

>

>

>

>

>

>

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[Guest guest]

My male SMA & MD friends all use the men's urinal and have pants with zippers

altered (replaced zipper with a longer one) to unzip lower so the pants can

stay buttoned at the waist. Some wear underwear, some don't.

Angie

On Monday 22 May 2006 16:13, Bettylou Ross wrote:

> Dear Guys (and caregivers of males),

> I have a kind of personal question to ask. My son Bernie - type 2, sits

> well but doesn't weight bear at all - is almost 10, and we are wondering

> about long term arrangements for toileting - especially as he gets a bit

> heavier - at home and school. Currently we lift him from his chair to a

> bed or padded table and let him use a urinal. (He has a bm every morning

> on a commode at home and doesn't usually need to worry about that at

> school. So bm is not an issue, just urination.)

> I like that he is able to stretch out on the padded table or bed a few

> times a day. But he's getting a little heavy for 1 person to lift safely

> - about 50 pounds - and we are thinking about bathroom renovations at

> home and school, and whether it's time to get a lift.

> A relative suggested to me that as he gets older he should use a condom

> catheter at school. This sounds convenient but uncomfortable. She has

> also suggested that he needs to be circumcised for better hygiene as he

> gets older.

> Trying to pull down pants while he's seated in his chair to let him

> urinate is not bad - but it's really hard to get pants back up.

> May I ask how you guys handle this situation? Please feel free to email

> me off list if you are more comfortable - eross@...

>

> Many thanks for your assistance with this problem,

> bettylou

>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>

[Guest guest]

I have SMA and am 37. Here's my gig. Currently I can still urinate

by myself. I slide forward in my wheelchair, unzip, extract and

urinate. As I've gotten weaker, I've changed to docker pants, and

never wear jeans. I've also changed over to small briefs that make

it easier for me.

There's been times when I've been too weak to go by myself and I've

driven 20 miles back home from work so my wife could help me. It's

odd thinking that I'll become to weak to urinate by myself before I

become too weak to drive. Hmmmm..

If I continue to get weaker and I am faced with either asking for

help or using a condom catheder, I'd probably use the catheder for

independence.

As far as BMs, I haven't been able to transfer myself since I was

14. Luckily, my body adheres to a normal schedule and I don't find

myself needing to go during the day at work.

> > Dear Guys (and caregivers of males),

> > I have a kind of personal question to ask. My son Bernie - type

2, sits

> > well but doesn't weight bear at all - is almost 10, and we are

wondering

> > about long term arrangements for toileting - especially as he

gets a bit

> > heavier - at home and school. Currently we lift him from his

chair to a

> > bed or padded table and let him use a urinal. (He has a bm every

morning

> > on a commode at home and doesn't usually need to worry about

that at

> > school. So bm is not an issue, just urination.)

> > I like that he is able to stretch out on the padded table or bed

a few

> > times a day. But he's getting a little heavy for 1 person to

lift safely

> > - about 50 pounds - and we are thinking about bathroom

renovations at

> > home and school, and whether it's time to get a lift.

> > A relative suggested to me that as he gets older he should use a

condom

> > catheter at school. This sounds convenient but uncomfortable.

She has

> > also suggested that he needs to be circumcised for better

hygiene as he

> > gets older.

> > Trying to pull down pants while he's seated in his chair to let

him

> > urinate is not bad - but it's really hard to get pants back up.

> > May I ask how you guys handle this situation? Please feel free

to email

> > me off list if you are more comfortable - eross@...

> >

> > Many thanks for your assistance with this problem,

> > bettylou

> >

> >

> >

> >

> >

> >

> >

> > A FEW RULES

> >

> > * The list members come from many backgrounds, ages and beliefs

So all

> > members most be tolerant and respectful to all members.

> >

> > * Some adult language and topics (like sexual health,

swearing..) may

> > occur occasionally in emails. Over use of inappropriate language

will

> > not be allowed. If your under 16 ask your parents/gaurdian

before you

> > join the list.

> >

> > * No SPAMMING or sending numerous emails unrelated to the topics

of

> > spinal muscular atrophy, health, and the daily issues of the

disabled.

> >

> > Post message:

> > Subscribe: -subscribe

> > Unsubscribe: -unsubscribe

> >

> > List manager: (Sexy Mature Artist) Email: Esma1999@...

> >

> >

> >

> >

> > oogroups.com

> >

> > List manager: (Sexy Mature Artist) Email: Esma1999@...

> >

> >

> >

> >

> >

> >

[Guest guest]

My MD friend uses pants with a velcro fly. He doesn't need to unsnap

waste. He uses an Odwalla juice bottle because it's more narrow than a

urinal, so fits more easily between his legs.

[Guest guest]

Thanks everyone for your advice on this!! It's been really helpful! I'm

going to try to respond personally to you later.

Part of what makes Bernie's situation difficult that I forgot to explain

is that he often wears a body brace which covers the waistband. So we

are going to have to figure out a way to work around that. Creative

sewing indeed.

thanks again,

bettylou

[Guest guest]

Betty Lou,

I wrote earlier with my suggestions of what worked for who is about

the same age. He also wore a TLSO which did complicate things a bit, for 8

years until he had spinal surgery this past year. I would be happy to share the

easy pattern for adapted pants with snaps thigh to thigh or I recommend trying

side snap tear away athletic pants, both worn with boxers works great with the

small crooked neck 8 oz baby bottle instead of a large urinal. It allows him

to go in his chair without much fuss.

Ronna

[Guest guest]

My son (non-SMA) is uncircumcized and, as it has been explained to me

by several of his doctors as well as my husband's urologist, unless there

is an underlying medical problem (such as phimosis, an abnormal adherence

of the foreskin to the glans of the penis, making it difficult to maintain

proper hygiene) then there is absolutely no medical reason to undergo

circumcision.

There's a great page about circumcision here:

http://www.intelihealth.com/IH/ihtIH/WSIHW000/35320/35323/369061.html?

d=dmtHMSContent

>

> Dear Guys (and caregivers of males),

> I have a kind of personal question to ask. My son Bernie - type 2, sits

> well but doesn't weight bear at all - is almost 10, and we are wondering

> about long term arrangements for toileting - especially as he gets a bit

> heavier - at home and school. Currently we lift him from his chair to a

> bed or padded table and let him use a urinal. (He has a bm every morning

> on a commode at home and doesn't usually need to worry about that at

> school. So bm is not an issue, just urination.)

> I like that he is able to stretch out on the padded table or bed a few

> times a day. But he's getting a little heavy for 1 person to lift safely

> - about 50 pounds - and we are thinking about bathroom renovations at

> home and school, and whether it's time to get a lift.

> A relative suggested to me that as he gets older he should use a condom

> catheter at school. This sounds convenient but uncomfortable. She has

> also suggested that he needs to be circumcised for better hygiene as he

> gets older.

> Trying to pull down pants while he's seated in his chair to let him

> urinate is not bad - but it's really hard to get pants back up.

> May I ask how you guys handle this situation? Please feel free to email

> me off list if you are more comfortable - eross@...

>

> Many thanks for your assistance with this problem,

> bettylou

>

[Guest guest]

I've had a friend with SMA tell me how difficult it is to have care

attendents keep things as clean as they should be while not being

circumcised you might want to take that into consideration in this

decision.

> >

> > Dear Guys (and caregivers of males),

> > I have a kind of personal question to ask. My son Bernie - type

2, sits

> > well but doesn't weight bear at all - is almost 10, and we are

wondering

> > about long term arrangements for toileting - especially as he

gets a bit

> > heavier - at home and school. Currently we lift him from his

chair to a

> > bed or padded table and let him use a urinal. (He has a bm every

morning

> > on a commode at home and doesn't usually need to worry about that

at

> > school. So bm is not an issue, just urination.)

> > I like that he is able to stretch out on the padded table or bed

a few

> > times a day. But he's getting a little heavy for 1 person to lift

safely

> > - about 50 pounds - and we are thinking about bathroom

renovations at

> > home and school, and whether it's time to get a lift.

> > A relative suggested to me that as he gets older he should use a

condom

> > catheter at school. This sounds convenient but uncomfortable. She

has

> > also suggested that he needs to be circumcised for better hygiene

as he

> > gets older.

> > Trying to pull down pants while he's seated in his chair to let

him

> > urinate is not bad - but it's really hard to get pants back up.

> > May I ask how you guys handle this situation? Please feel free to

email

> > me off list if you are more comfortable - eross@

> >

> > Many thanks for your assistance with this problem,

> > bettylou

> >

>

[Guest guest]

Indeed, that was my relative's concern - she works at a personal care

facility.

thanks

bettylou

charmedcripchic wrote:

> I've had a friend with SMA tell me how difficult it is to have care

> attendents keep things as clean as they should be while not being

> circumcised you might want to take that into consideration in this

> decision.

>

>

>

>

>

>

>>

>>>Dear Guys (and caregivers of males),

>>>I have a kind of personal question to ask. My son Bernie - type

>

> 2, sits

>

>>>well but doesn't weight bear at all - is almost 10, and we are

>

> wondering

>

>>>about long term arrangements for toileting - especially as he

>

> gets a bit

>

>>>heavier - at home and school. Currently we lift him from his

>

> chair to a

>

>>>bed or padded table and let him use a urinal. (He has a bm every

>

> morning

>

>>>on a commode at home and doesn't usually need to worry about that

>

> at

>

>>>school. So bm is not an issue, just urination.)

>>>I like that he is able to stretch out on the padded table or bed

>

> a few

>

>>>times a day. But he's getting a little heavy for 1 person to lift

>

> safely

>

>>>- about 50 pounds - and we are thinking about bathroom

>

> renovations at

>

>>>home and school, and whether it's time to get a lift.

>>>A relative suggested to me that as he gets older he should use a

>

> condom

>

>>>catheter at school. This sounds convenient but uncomfortable. She

>

> has

>

>>>also suggested that he needs to be circumcised for better hygiene

>

> as he

>

>>>gets older.

>>>Trying to pull down pants while he's seated in his chair to let

>

> him

>

>>>urinate is not bad - but it's really hard to get pants back up.

>>>May I ask how you guys handle this situation? Please feel free to

>

> email

>

>>>me off list if you are more comfortable - eross@

>>>

>>>Many thanks for your assistance with this problem,

>>>bettylou

>>>

>>

>

>

>

>

>

>

>

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..) may

> occur occasionally in emails. Over use of inappropriate language will

> not be allowed. If your under 16 ask your parents/gaurdian before you

> join the list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

> spinal muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>

>

>

>

>