Women with Motor Neuron Diseases

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Frizzel

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177
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DX UMND/PLS
Diagnosis
03/2007
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US
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WA
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Vancouver
My name is Frizzel. I am interested in how many women who are diagnosed with ALS, PLS or a MND are viewing this forum.

Could each of you women just share one thing that you are doing to keep going day to day with home, family, work, responsibilities and taking care of yourself?
 

liz

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Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
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US
State
NY
City
Albany
I told my employer about my situation right away and they agreed to pay for a few accommodations which enable me to get around the work site (changed all door knobs to lever style) and maintain productivity (bought voice recognition software). I've been open about my diagnosis with coworkers who for the most part have been extremely nice when I ask for help with all the stupid little things I can't do because of the atrophy/weakness in my hands. They have made it so I don't feel like I'm imposing.

At home, where life is much more physically strenuous, much of what I used to do is now being done by others or by me with assistance from others. It has been a bit of an eye opener for them to realize just how much mom took care of every day. A lot of activity at my house is now started with me saying "can you do me a favor.....". My two teenage daughters have been incredibly helpful. My younger sons have become little gentlemen - holding doors, carrying my bags. I must admit some stuff simply isn't getting done - the nooks and crannies are definitely showing the dirt and there are dust bunnies rolling through my house like tumbleweeds. Also, we eat out more often than we used to since I can't cook. Generally, I try to keep the emphasis off of me and on what's always been most important, for example, how the kids are doing with school and their "extracurricular" activities.

The thing I like least is needing help with personal-care needs. We had a rather hilarious episode where the girls offered to wax my lower legs for me (my last shaving attempt I botched so bad that it ended up looking like the shower scene from Psycho). And my husband is now in charge of trimming my toe nails which we both agree is not sexy.

That's for now. We'll see how things unfold as my needs increase, my girls leave home, etc.

Liz
 

Frizzel

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DX UMND/PLS
Diagnosis
03/2007
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WA
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Vancouver
Thanks Liz!

That's what I'm looking for. Anything we can post for each other that will be helpful and/or how we are making the adjustments to our diseases. If you'd like to share what you have been diagnosed with, that's great too.

Liz, my PLS started in my legs years before the ALS has now started in my hips and now wrists. So, my legs are wearing out. Wish I could exchange them for a new set but no such deal. I moved from a cane in January to an electric 4 wheel scooter in June. We too have moved to lever handles in our home and wheel chair access in our shower.

My right hand and arm are still very strong so I continue to cook. My wrist is getting weaker. I hire a friend to come and clean my floors and vacume for me. It was such an adjustment for me to ask for help. AND I'd rather spend my time being WITH family and friends than exhausting myself trying to do things FOR everyone. You're making memories with your kids Liz.

Work... we have our own business and I fought having our office at home. Now I am so glad because I can work, rest, move, take a break when I need it. High 5 to you Liz. We're in this for the long haul so lets be sure to take a couple breaks at the rest stops.

Stay in touch. I hope other women diagnosed with ALS, PLS or MND's can share YOUR experiences with daily goings on. Doesn't have to be long. Just enough to know we're heard.

Talley Ho!

Frizzel
 

Rhonda

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Sep 12, 2006
Messages
108
Reason
PALS
Country
US
State
GA
City
Mableton
Hey Frizzell,
I retired from my job 9/06. After I retired I went on several wkend. trips with family and friends. After that I still could do little things around the house. As of now I don't do much because of weakness. We got a bidet seat to help with my bathroom needs. I use nair on my legs, my daughters do the underarms and I treat myself to a manicure and pedicure every 3 wks. We are finishing the handicap shower this week. I get so tired showering, I'll be glad to sit down. My husband helps me dress and brushes my hair. It is hard to let someone help with personal needs. I am weak in hand & arms so I need help to pull pants etc. up and down and if I don't have help it would take me forever. Thank God for good family and friends.
Rhonda
 

Frizzel

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Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
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US
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WA
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Vancouver
From Nair to Bidets...good tips!

I've heard of the bidet seats. I'm not there yet but from what I hear... they're very handy. Would you recommend one Rhonda?
 

Rhonda

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108
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PALS
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GA
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I would definitely recommend a bidet seat. Now that I spend alot of time at home it gives my hubby a break with the personal stuff. I have ordered a travel bidet, I'm going to Myrtle Beach with my daughter and I wanted to try it and see how well it does. I will let you know. Also I called the ALS loan closet about the bidet and they sent me a new one. So I would check with the ALS loan closet. They cost around $600.00 if you have to buy it. I was going to buy one until they told me they buy them out of their budget for equipment. What a blessing it was to me not having to spend that money.
Rhonda
 

CindyM

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Hi Frizzel-great thread you have started! On an earlier thread there is a post about how much the entire family enjoys the bidet. The poster said she would recommend it regardless of physical need.:)

Back to your original question-I don't have much to add except that wives and mothers tend to feel the need to "do" for others, don't you think? It must be a big role adjustment....Cindy
 

Peg B

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Nov 5, 2006
Messages
414
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PALS
Diagnosis
10/2006
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US
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Michigan
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Flint
Hi Frizzel,

This is a great thread. I went on Long Term Disability in Nov. 06, and retired March 1, 2007 after 36 years. I have slowly been adding changes. I never cooked much as I have been the "working parent" and my husband the "stay at home" parent, so my situation is a little different. However, I have gotten gadgets to help, veggie chopper, electric can opener etc. I have used voice recognition since 1993 as I taught it to students with special needs. I love books on tape and get them from the library. For mothers day I got a 5 CD player so when I can't put CDs in then, someone else could put 5 in and leave me be for a long period. I had a walking stick from a student and put a rubber tip on it and a bicycle handle at the other end (it has a lip) so I can hold it well. I use it for longer walks in lieu of a cane. I also record my voice and let the computer read it. I shower and dress before coming down stairs so I limit up and down steps. Also I bought lots of gel pens so I do not have to press down or hold the pen tight when I have to write. I am right handed and my right hand has atrophy and weakness as well as my legs. I have a very slow progression which has been going on since 2002 with weakness and falling, but I have made gradual adjustments for years to accommodate the changes. I hope this helps. I am taking piano lessons for exercise and fun as well as singing lessons. God's Blessings and peace to you all. Peg
 

Frizzel

Distinguished member
Joined
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Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
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Love It!

Thanks Peg! Yes, yoiur suggestion did and will help. I'm going to get some gel pens today. Didn't even think of that...with working and having to write at times, great tip.
I also play the piano, classical for 14, taught and now just play from my heart by ear. Wish I could play with my ears! Fingers are stiff and sometimes miss the notes but I'll tell you it's wonderful to know I can continue to play. There are way to keep adjusting to this disease, you're right.

Books on tape checked out from the library...another great tip.

Keep sharing women! We're here for each other. Cindy, jump in any time. You've moderated and supported the people on this forum and we appreciate you.

Frizzel
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
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Rhonda is Awesome!

Wow Rhonda! When you first posted requesting info about portable bidets I thought you were really stretching. Can't believe you found one and can't wait to hear your review of it. I really believe difficulties with toileting may be what forces me to leave work. They can accommodate a lot - but not that. :eek:

How long from the time you were diagnosed 'til you stopped working?

Have been using that new razorless Veet since the waxing episode. Works ok.

Liz
 

Montana Carol

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Joined
Jun 22, 2007
Messages
85
Reason
PALS
Diagnosis
06/2007
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US
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Montana
City
Corvallis
I am learning so much from all of you! Thanks! I've downloaded the Model Talker software and have done all the recording so I'll have a speech-banking program ready to use when and if I need it. My speech is my first and worst symptom, and seems to be going faster lately; otherwise I can do everything, except I'm having trouble with buttons and my curling iron and other things that require more strength in my dominant right thumb. My left hand is still pretty strong, and does more than it used to.

What is the voice recognition resource you're using, Rhonda and Peg? And how does it work? Where can I go to find bidet seats? It sounds like a nice thing, even if it's not an absolute necessity!

Are you employed girls still driving to work, or ...? It amazes me to hear about the accommodations you speak of on the part of your employer, Liz. They must value you a LOT. Do you use the voice recognition software exclusively, or do you still have intelligible speech?

I want to read more! Thanks!
 

Peg B

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Messages
414
Reason
PALS
Diagnosis
10/2006
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US
State
Michigan
City
Flint
Hi Carol,


The voice recognition is Dragon NaturallySpeaking. It can be used with speech that is difficult to understand but that takes tons and tons of training the computer to understand what you say so that when you dictate "Ice cream," it writes that and not "I scream." It is made to take the place of secretaries, but is adapted to fit a variety of needs. Can you type? Word prediction programs might work best if your voice is going. The way it works is you type in part of the word and it finishes the word for you. A program called "Co writer" is programed for younger children but it also has advanced age group and word lists so for example if you type in "bea" it will give you a list and it will include "beautiful." You hit "enter" and the word appears. If you have no consistent speech but can type this is another way to go. There are many assistive technologies that can be adapted for a variety of needs so that one has many ways to communicate.

The other thing I did was to get a perm so I do not have to go to the beauty shop as often to keep my hair short and I have "wash and wear" hair and no curling iron. My sister who is not disabled has her eye liner on as a permanent "tatoo" I will do this eventually so my eyes are made up. I thought that was a cleaver move. Take care, Peg
 

CindyM

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Buttons! Who needs em? I got some fishing line -the clear nylon kind- and looped it through all my zippers so that I have an easy to handle "Zipper pull". Better than fiddling with the actual metal tab. And I only buy pull-up pants now. One day in a fit of frustration I took all the buttons off my zip-pants and sewed velcro in place. Then I re-sewed the button on the outside so that after I velcro-close my pants it looks like they are really buttoned.

I got gel pens for the office, and am thinking of getting a dryer-holder for the bathroom. the dryer is too heavy but when I went to the hairdresser on Saturday she gave me a cute little boy cut that can dry on its own.

I love to read but books are too heavy so I do the books on tape thing. For Christmas a friend gave me a lap pillow that has ribbons to hold your book open. It's nice but the tapes work better.

Funny story-yesterday my daughter came to visit and said she had a headache so lee went to the medicine cabinet to get her Tylenol. They both forgot that I don't do caps now. I can't twist and I can't pull. So he gave the barely-there cap a good yank and pills flew in every direction! :-D

All this from a woman who firmly believes she will somehow get better! (Knock wood.) But JIC (Just in case) maybe, Frizzel, you should get us thinking of ways we can teach others how to do what we once or still do. I could be good for them to learn to be more self-sufficient and it could be good for us to learn to rely on others just a bit. I'm only saying...:) Cindy
 

liz

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Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
L.L. Bean sells some nice elastic waist knit pants that are decent for work and not too, too pricey. I'm pretty much doing all my clothes shopping on-line now because walking around malls/shops is too difficult.

I use Dragon Naturally Speaking also. Am still able to speak clearly so voice recognition works OK for now.

I still drive to/from and about town. Longer distances (anything more than an hour) cause my right ankle and foot to lock up making walking much harder for the rest of the day.

Liz
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Thanks Ladies

This is so great that we can share what works for us. Women have tailored needs in taking care of ourselves. Like tattooed eye liner! That is cleaver Teg! Maybe even lipstick or a natural looking lip liner since that's getting somewhat more difficult.

I found a tinted lip chap stick at 'Bath and Body Works' by Savannah that is easier to apply. They come in about 4 colors.

I go in for my occupational therapy this week and will look into Dragon Naturally Speaking. Love the name. We use to live were there was a natural nesting ground for dragon flies and they hatched out by the thousands every year. What a sight and the colored varieties? wow! They covered the sky like experienced trapeze artists.


I'll check out LL Bean Liz. Good tip to shop on line. For me, I have to see what fits and once I do, I'll be able to order on line, too.

Cindy good tip on replacing the pulls. I don't have a problem with the pulls yet but I do with the make up. I've still got a good pinch. Gave up most eye make up though. I do like the velcro idea. My sewing would look like a dog chewed it up though. Don't I wish I would have listened during Home Economics in high school. Too busy passing notes! ha!

Thanks for your posts ladies. :) Till our next visit.

Frizzel
 
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