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?

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

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

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

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?

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

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

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

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

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

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!

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

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

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

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

Hey Girls,
I was diagnosed in June 06 and left my job 9/29/06. I was a letter carrier and just couldn't do anymore because of the heavy lifting and so much use of my hands. If I had it to do over, I would have left the day I was diagnosed. I think I over used my hands causing the weakness to come faster. My sisterinlaw has tatooed eyebrows, eye liner and lips. It is something to consider.
Rhonda

:-D
By the sounds of your sister's experience, you may be one of the first on this forum to take the plunge. What do you think?

Letter carrier eh? What things do you enjoy now Rhonda,

Frizzel

thank you so much for starting this thread, Frizzel! I hope you are able to keep it going and I hope more of our sisters check in! :) Here's to a summer night filled with fireflies, butterflies, and dragonflies! Cindy

Frizzel you may be right I may take the plunge. As far as what I enjoy now is sitting on the deck watching this wild rabbit in the back yard. I enjoy playing with my grandchild (Kenley). She's miss drama queen, she's a Godsend!! I have had a hard time adjusting
to not working, my husband went out on disability in 1990 and I have worked since I was 14. I also had to adjust to being with my husband 24/7. I'm trying to get out more and do some things. Someone ask about finding a bidet, just google toto bidet and you will find alot, also ebay has them. Has anyone had their eyelids lifted? Mine are droopy from the disease affecting my face. Everyone says I look younger but I know they are not being truthful.
Rhonda

Rhonda, As far as eyes lifted. I've seen a few of them done. Especially since we lived in California. I think their state song should be "Come lift me up where I beelooooong!"

Oh yes, to answer your question. Some people looked like deer in the headlights, some looked like they needed more work than just the eyes and others looked refreshed. It's all in the expertise of the plastic surgeon. If it was me, I ask to meet a couple or see a whole bunch of before and after pictures.

I've decided to pull my hair back in a tight tight pony tail!!!! Just kidding...actually just got a real short cut. Figure with my droopy lids, they won't need make up anyway.

I'm as good on the outside as I perceive myself on the inside. I'm all for lifts if that's what YOU want. If it's to please others, maybe think of other ways to spend your money. You'll know Rhonda.....

Someone had told me that sometimes the eyelids get so bad with the ALS stuff it's hard to see. Has anyone ever heard of that? That would be the only reason I would do it.
I am enjoying this thread. Come on ladies give us some insight on girly stuff or some special trips you've taken with just the girls. I would like to know what supplements
the ladies are taking and how much.
Rhonda

Hi All,

As far as the eye lid lift. I was talking to someone and they said that insurance will pay for it, if it interfers with eye sight. Check that out before paying for it.

My sister and I went to "Margaritaville" with just the two of us at her cottage. What fun. Two nights and one full day. She drank frozen Margarita's and I drank frozen Dacguries. We bought good food before we left and did a little work then floated for hours in the lake - great fun and peace. She is a cancer survivor who had congestive heart failure last year. She finished a teaching degree two years ago (at 52) then got cancer, but got a 1/2 time teaching job last fall and hopes to go to full time this year. We could not stop talking and laughing. We both are religious and also read the book "The Secret." So we are out to be positive and fun. "Margaritiville" is now scheduled to happen with additional women in late July and late September. I used a cane to climb down and up to the lake and will drink less next time. :-D - but it was great.

Just a note my other two sisters also have had breast cancer. One is a 9 year survivor with no complications and the other lived 12 years with some long times of struggle after it went to her bones. She died on December 31, 1999, but went canoing in the back waters of Minn. that August and her acommodation there was a cell phone in case she needed to be air lifted out for some reason. She was a great role model. I tell you that as we talk about ways to do all the things we used to do and still want to do. We can find many ways to do things until we can't. God Bless you all. Peg

You're right Peg about insurance paying if it is interfering with your eyesight.

I just posted a note on the other thread started by Cindy. I love that you shared about your sisters Peg. What would you like to share in how your sister was a role model? I think she hung on to cheer you on through your masters degree. How many sisters do you have?

I laughed at your Margaritaville and next time not so much drinking. Don't be making promises you can't keep now Peg. ha ha!

I have three older brothers. Needless to say, I did NOT grow up a princess...I was a tom girl through and through. Learned how to keep up with the guys or I didn't go anywhere.

What are you climbing down with your cane?! Do share....

Sunday afternoon my husband, our son and a few of us went to this gorgeous natural park frisbee golfing. Don't ask me how to do it... I only cheer them on. I rode my 4 wheel chair all 18 holes. A few times my husband and son had to push me up a steep hill with the chair on high speed, dirt and grass spitting out the back AND I got up to the top. (with their help) We too laughed that I still have that quirky sense of humor and am willing to still laugh at situations like that. They have decided to get me a bigger honking horn so if I start sliding backwards, they'll hear me.

Enjoy your summer Ladies! AND share some of what you're doing, too.

Frizzel

Hi Frizzle,

You make me laugh too. There were 5 girls and one boy. We have all been very close and are very lucky to have each other. All of the sisters eventually became teachers, even the youngest who graduated postumonously. The model that my oldest sister provided was one of determination and grace. She fought hard with cancer and continued to take care of her family and work with her students even when she was home bound. When she could, she traveled, and played hard. When she could not and needed help she had the grace to let people help her and never give them a bad time. My other two sisters: one 2 years younger is a one year survivor of breast cancer and the other one who is a year and 1/2 older is a nine year survivor. I have lots of good role models. My mother was also full of grace and was easy to take care of with advanced Parkinson and two other kinds of cancer.

Apparently I take after my Dad's side. A cousin on his side has had PLS for about 14 years. I just found that out as I have not seen him since he moved to CA. about 40 years ago. He tells me though he uses a cane because it is "cooler" than crutches.:-D The sense of humor is always helpful.

The lake was at the bottom of a hill from her cottage and I did not want to fall so I used a cane just in case as I was not too steady especially with the drink.
God Bless you, Peg

I too thank you for starting this thread. It seems more men than women are diagnosed with ALS so this is great! I have found a few things that really help me: swimming has been great. It's one thing I can do and almost feel "normal" again. I also ride a bike sometimes. I realize it's not safe and drives my husband crazy. I have a hard time getting on and off (so, try to avoid the stop signs), but once I'm on I can ride around - pretty slowly but it's still fun. Yoga is another fun exercise I've discovered. Stretching is important with ALS and yoga seems more exciting to me than the boring regular exercises. There are several props you can buy that make the yoga easier: belts (great for stretching your legs), bolsters (great for stretching your back), blocks (good for making poses easier) and blankets (also good for making poses easier). I hired a yoga instructor to come into my home once every two weeks. I find that's easier than going to a yoga class and feeling frustrated because I can't keep up.

I have an 11 and 14 year old. Because I know ALS is progressive, I'm really trying to spend time doing things with them that I may not be able to do in the future. Going to the lake is great. even if I just spend most of my time sunbathing, it's still a great family outing.

My challenges are hygiene related at this point. I'm having a difficult time using tampons. Any hints on that one? I just don't have the strength to pull them out! I don't want to ask my 11-year old to help with that. My husband works so that wouldn't work either. I suppose I could just switch to pads. The bidet sounds pretty enticing. Wiping myself after bowel movements is also getting difficult. Hmmm...it's the little things, isn't it?

Thanks for taking the time to post Kate. Living with ALS you are in a very special part of this forum of women. There is a kindred spirit amoung us that I can sense when I read the posts here. GREAT little community of women.

I've never thought of hiring a Yoga Instructor to come to our home. Another great idea! I go to physical therapy and have practiced stretching and poses most of my life. Staying limber and stretched IS VERY important...I hear you about not keeping up. My husband has to help me keep my legs moving for the most part now. We get some good laughs in. I also have to concentrate on how far I stretch.

We have an adult daughter and son. I also drive my hubby crazy with things I try to keep doing. ALTHOUGH I've given up bikes (I look like the guy on the old 'Laugh In' who falls off his bike when he stops. Even getting going would now be near impossible.)

A close friend came over with his Harley Davidson and took me for a ride a couple of weeks ago. My hubs lifted me off the bike and carried me into the house with the biggest grin on my face. "Let er roar!!" I tell myself.:-D

Unless one of the other ladies has an idea with periods, pads may work best. Do you have an ALS CLinic CLose by? Ask them about getting a Bidet.

GOtta go to work. In Joy being with your girls this summer. I'm sure you'll be sunbathing together and making some sweet memories.

All the best to you and again, Welcome Kate.

Frizzel

Hey Girls,

I went 11 months without a period, thought I was home free then in June I had a period:cry: the magic number is 12. I had to use pads and I hate them. So my next gyn.
appt. I'm asking to take the pill where I don't ever have a period. The bidet is one of those things you have to have.
Rhonda

Hey Rhonda,

We don't get into brands of supplements here just because it can turn into a place to 'sell' product and that's not the reason why we're here.

I personally take about 400 milligrams of a good CoQ10 daily and Flax seed oil.
I have been healthy eating conscious most of my life. That nasty tasting greens drink from a powder, buffered water soluble vitamin C and a protein powder that's made out of chick peas. I was vegetarian until II got breast cancer 16 years ago. Now I eat whatever I want in moderation. I enjoy the journey of life...an ocassional snicker bar or coke...or whatever I want.

Personally I think stress is one of the biggest hang ups with our minds, spirits and bodies. I have learned to set healthy boundaries and have healthy friendships. 'Dance life with those who want to learn how to Dance life with you and you with them'.

May I suggest to all of us to frequent people and places that bring a smiles to our faces. May I also suggest to share the joy. Like Rhonda with her drama princess grandchild, or Peg with her sister drinking Margaritas. ha! That made me smile. CIndy with her imagination of butterflies & dragonflies, Liz reading books from the library by the pool with her kids and KateO sunbathing at the lake with her daughters.

Oh my...how we miss the little precious moments in life worrying about tomorrow that isn't even here yet. Soak in today. When the crap of life hits the fan, let's turn the fan off and ask for help to get it cleaned up to use again. I'm processing this life as much as the rest of you are. It's hard, constant adjustments and in those moments when we can stop and soak in some joy to then pass on to be remembered, let's try to do that as well.

Blessings to each of you and to a day that we can encounter at least one treasured moment.

Frizzel

Yes, Kate -

These delicate matters suddenly have become a daily source of stress. A short while back Candd talked about DepoProvera shots as a good solution to the "what to do about my period/don't want it to become a group activity" problem. I'm checking into that when I see my GP next month.

Liz

PS - our kids are about the same ages. PM me if you want to talk.

For those of you that don't know...you can click on the person's name that you would like to send a private message to and then you can talk about things you may have in common.

Went out to our garden this evening. Tried to hold the hoe and dig out some weeds and my left hand will no longer hold the hoe. My grip just couldn't do it. No strength. I still could pull weeds with my right hand. That hand is showing weakness now, too. Another adjustment. I actually lay down beside the carrots the other day to weed them out. 5 years ago I was tending ten 50ft rows of flowers and vegetables. Now, I'm in an electric chair tending to our carrots and beets laying down. There's nothing like warm, fresh dirt.

Hi guys. Regarding PM's don't forget when cleaning out your mailbox that your sent messages add to your total so it need cleaning out as well.
AL.

Sorry ladies for posting in your thread but as most of you know I do read all posts and thought the PM message was pertinent.
AL.

...Went out to our garden this evening. Tried to hold the hoe and dig out some weeds and my left hand will no longer hold the hoe. My grip just couldn't do it. No strength. I still could pull weeds with my right hand. That hand is showing weakness now, too. Another adjustment. I actually lay down beside the carrots the other day to weed them out. 5 years ago I was tending ten 50ft rows of flowers and vegetables. Now, I'm in an electric chair tending to our carrots and beets laying down. There's nothing like warm, fresh dirt.
Frizzel,

Please excuse the intrusion of a male here but gardening is a transgender activity so I thought I'd comment. I'm a keen gardener too and found three years ago I was unable to do it because of mobility problems. Like you I use a scooter to get about. I had three large raised beds constructed (4'x12') and find I can garden fine from my scooter. I also use a "garden bandit" for weeding ( http://www.gardenbandit.com/ ) which overcomes the strength/dexterity problems in my hands.

John

I just looked it up on the web. Thanks for the tip John. I do have one small rased herb garden by the house, flowers in pots, too. If you'd like to PM me that's ok too. Maybe we could exchange some ideas that way.

Hey Frizzle - John's way sounds better.... makes for less laundry. Maybe we can make him an honorary chick for coming up with such a good suggestion. - Liz :)

All Honorary Members will have 'passed over the finish line'. Thanks for the tip though John and you're always up for putting smiles on our faces Liz.

I went to the occupational therapist yesterday and they made me a hard mold thumb, half hand and up to the middle of my arm so my wrist doesn't give way when I work. I can even pick up cast iron pans with it. Using rolling trivets now with the silicone oven mitts to protect the brace.

Shoot, I just mentioned what was going on and they made me a custom mold in about 1 hour. It's not something I'll always use but I can hold things without my wrist giving out for now.

Going out to the garden later today to play in the dirt. Will keep you posted.

Hooray for sunshine!!!! Frizzel

The arm brace worked. A little awkward but at least I could be out in our garden. Yes, I'm a die hard gardener. It's also handy for those of us whose fingers still work but the wrists are getting weaker.

Have a great week . I have this bran muffin recipe that I put together in the fridge that lasts for 7 weeks. You just keep it in covered bowl and dip out however many you need for the morning. If anyone wants the recipe let me know. Any other easy breakfast tips ladies?




Frizzel

Frizzel, I'd love that bran muffin recipe. Is it sourdough, to keep so long? I'm not gonna try it until the weather cools off some -- but it sounds great. Also, your brace sounds like a nifty helper. Expensive? Thanks for the ideas. Carol

Yes, Frizzel, I also would like the bran muffin recipie. Regarding handy little devices, I found a couple I intend to buy on this site. http://www.disabilityproducts.com There might be similar places to find the same items-haven't done all my research yet. But these 2 items are less than $8 each:

There is a door or car key holder for persons with arthritis or a weak grip. The curved, heavy-duty handle provides extra leverage making turning keys easier. Holds three standard keys which can be folded.

The second item is a easy write-easy grip pen. The website says it is ideal for persons with arthritis or a weak grasp, and is not only lightweight, it requires almost no pressure to write. I'm sure items like these could be found locally as well. I heard of a store in our state that recycles adaptive equipment so I might look there first. Cindy

I'm going to start a post for easy recipies.

This is so easy to have in the fridge. We can have them made up or make them up ourselves to have warm fresh muffins. You just mix it and each morning spoon out what you'll need or want that morning. It can also be doubled if you have a crowd. YUM!!! :-D

Combine and let cool-
2 Cups boiling water and 5 tsp. baking soda. Set aside.

In a bigger bowl
Cream together 1 Cup shortening or butter & 2 Cups sugar.
Once creamed, add 4 eggs.
Stir and add in 1 quart buttermilk.

Combine dry mixture of 5 Cups flour & 1 TBLSP. salt
(If you like nutmeg or cinnamon add some to the dry mix.)
THen mix into the creamed shortening and egg.

Add cooled soda water and mix again.

FOLD into above batter:
4 C. All Bran
2 C. 40% Bran Flakes
(optional goodies can be added into the above mixture)
2 Cups CHopped or diced dates
1 Cup chopped nuts

Store in a covered container in fridge one night before using the mixture to let everything soak into the bran. THis mixture will keep for 6 weeks if it lasts that long.

To bake: Spoon into muffin tins lined with cupcake liners. I fill them with a spoon full of mixture so they are about half full. That way the mix lasts longer, too.

Bake at 350 for 20 minutes or until toothpick comes clean.

SOmetimes I push into the top a few blueberries or chocolate chips. If some like nuts and some don't, I leave the nuts out of the main mixture and put a couple nuts at the bottom of the muffin cup cake liner with a couple chocolate chips and THEN add the muffin mix.

They are yummy! Now my husband can get up, get the muffin tin out, put the liners in, and bake fresh muffins for us every couple of days. We usually only cook about 6 at a time unless we have company. Most everyone loves them.

ENJOY!!!

Frizzel

Since it's just us ladies.... My symptoms definitely get stronger (fasciuculations, spasms, clonus, fatigue) during my monthly cycle. Same with you?

Hi Kate,

If you sign up on your profile to accept private e-mails I'll write you back on this one.
Did you ever find a good neruo in your area?

Frizzel

Hi Kate-

I haven't noticed all of that, just an increase in overall achiness that didn't used to be there. Hadn't thought it was ALS related. Hmmm.

Liz

Anyone notice when moving arms out or sideways there is alot of pain like you been punched in the bone Pat

I've noticed that if I don't keep stretched and even sometimes if I do when I go to stretch out and hold it there, I'll cramp or spasm up and have to wait until the muscle relaxes before I can continue.

Is that what you're talking about Pat? Where do you feel the punch when you move your arms?

My worst symptoms are my legs for now because of having had the PLS for so long. I do have wrist weakness.

Cindy, I sure like that pen! I found one similar at one of the stores here. I don't hold a pen like people normally do so the bigger grip is much more comfortable. Thanks for the tip.

My OT suggested using a gel pen to write with. Also helpful.

I know what you mean by spasm and cramps Thats not it. this is extreme pain if I reach over .the pain is in the forearm Thank god it passes after a minute or so Or I would need morphine for the pain Pat

Nope, I don't have that Pat. It sounds excruciating. At least it passes although it's not any consolation.

Kate, About monthly cycles. I'm past that now. I DID notice that I would get VERY fatigued, achy, hoarse and almost flu like a day or two before. I do get hoarse when I get over tired but that achy flu like stuff before my monthly cycle? Not any more.

I thought ALS didn't affect the eyes! How does it start? With spasms of the eyelids or what happens?

This is a great surprise to me.

Kewanee

Kewanee,

MND's do not affect the eyes with their ability to see is my understanding. It hasn't affected my eyes at all.

Were you referring to the eye lids drooping? THat's only if the eye lid starts to droop over the eye. I Know several people who have had surgery on their eye lids paid for by insurance because the lid was pushing their eye lashes down over their eyes impairing their ability to see. NONE had MND's and it had nothing to do with their eye sight per say.

Would another one of the ladies with more knowledge about this give some insight?

Thanks for the muffin recipe, Frizzel. I'm looking forward to trying it. Carol

Thank you Frizzel.
Sound like what MG does. Eyelids droop.
Didn't know about this before. So does it start with spasms do you know anybody?
Kewanee

No Kewanne, I have never known anyone with a Motor Neuron Disease who had droopy eye lids or spasming in the eye lid BECAUSE of the disease. Jaw and neck yes, eye lids, no. Maybe one of the other women will share what they know.

You're right MG does cause drooping of the eye lid.

I try to not dwell on what's happening in my body unless it impeads my ability to do something. I can see very well and for that....I am grateful.

I agree sounds like MG

Frizzel-I have noticed the mucles freezing up thing-it is one reason why it takes me a long time to get upstairs. I have to wait for the muscles to kick into gear.

Pat- when did the pain start? Did it come on suddenly? I wonder if your GP shouldn't do an x-ray? I am thinking that with muscle loss, our bones become more fragile since it takes muscles to move the blood and nurtients into the bone. Maybe you have a small fracture going on there? Just a thought, Cindy

The pain only happens if I straight it sideways it feel like maybe the muscle that is dying is reation to quick movement I really dont Know.Its so painful and it comes on like gang buster Pat

Are you working with a Physical Therapist PAt? If not, I would suggest talking with your doctor about this and possibly get started with one. I have a PT that does pressure point therapy.

Is that something you could do before with no pain? Has it just started? Is this a new problem? Is any other part of your body having the same pain when moved?

Personally, I'd get in touch with what is happening with your body and start a new symptoms area on your computer and save it so when you visit or make an appointment with your doctor you have these things written down. When they occur, how often, pain intensity, on going symptoms that is consistent or intermittent. THen copy it before you go to your appointment. If it continues, you may want to see your doctor.

All the best! Take care of yourself Pat.

This is something new I was doing Pt three x a week range of motion and I stopped bcause I wasnt really getting more range of my arms. Now I am going to have a PT OT come to the house. I have this pain about a monh If I dont reach I am fine no pain Its very strange Pat

That's awesome you can have someone come to your home Pat.
I tell my OT and PT everything and I'm amazed at how they can localize working on a particular area. Let's hope you get some relief for your mind AND your body.

You haven't been swinging from one of those rope swings into the lake have you Pat? I just had a funny visual. I KNOW I KNOW it's not funny but my imagination is. Take care of yourself and keep me posted.

Frizzel.

Very funny I stopped doing that years ago LOLPAT:-D

Hi Rhonda,

Well did you take the plunge yet? I am actually thinking of getting my lips done with a natural color and tint to it. Another friend did and she looks GREAT! Another friend just had a wrist one that is vines with her initial. She's 73 and her name is Sugar. She is ADOREABLE!!!!!!!!!!

SOOOOOOOO it's never too late ladies!! :-D

We've had a ton of company. Our home is such a peaceful place. Our kids are grown. All our company pitches in an helps so I'm not burdened by working and trying to keep up meals and cleaning.

How's everyone's summer going? Any good reading or concerts or plants growing?

Hi Rhonda,

Well did you take the plunge yet? I am actually thinking of getting my lips done with a natural color and tint to it. Another friend did and she looks GREAT! Another friend just had a wrist one that is vines with her initial. She's 73 and her name is Sugar. She is ADOREABLE!!!!!!!!!!

SOOOOOOOO it's never too late ladies!! :-D

We've had a ton of company. Our home is such a peaceful place. Our kids are grown. All our company pitches in an helps so I'm not burdened by working and trying to keep up meals and cleaning.

How's everyone's summer going? Any good reading or concerts or plants growing?
Glad you asked Frizzel My summer has been pretty good, I bought a Miniature orange tree last year & I get great pleasure in seeing the two large as grapefruit oranges from last year that I left on for the pleasure of it, & about 25 green ones growing larger every day', its the little things in life that give us pleasure. I can;t do much in garden any more, but my husband John puts the plants in for me so I can watch them grow. & there are humming birds that come every 15 minutes or so to visit, & lizards darting around playing tag & doing pushups. it is the simple things in life that make it all worth while. I bet that's more than you asked for/ EM

Thanks so much for sharing about your orange tree, hummingbirds and the visual of the lizards darting about. That's exactly what I'm looking for. Those of us that use to be SOOO active and what small pleasures we're enjoying in life.

What mixture of sugar water do you mix up for your hummers. I bring them in with a 3 parts water to 1 part sugar and then go to 4 parts water to 1 part sugar. Funny thing is, we live on a well...I spoiled the hummers with distilled water while the iron was being flushed out for a few days. Now all they want is distilled water.

We have Rufus and Anna Hummers in the Northwest. They can be such obnoxious little birds with the feeders.

Anyone else want to share> Good to hear from you EM! Enjoy the simple pleasures!

Frizzel

My mom is dying...I need to spend time with her, my older (we're best friends) brother was just diagnosed with cancer going through a two year chemo, my favorite uncle is dying (he's my cribbage buddy) , the girl cousin I am closest to is dying of multiple melanoma all over her body, our daughter is pregnant with triplets, still trying to work full time because of having taken no pay check with our business I can not get disability, grumpy neighbors who have moved from the city into the country and want paved private roads so if we won't help pay for a 1000 ft drive stir up all sorts of dust onto our place during the day, housework, body getting weaker, spasms and cramps becoming like tsunamis AND I'm going to take a break for a while.....

I wish you all the best! Maybe with all these lemons, I can stir up some lemonade eh?

Take care.

Frizzel:)

Take care of yourself, Frizzel. We are always here when you need to vent or cry. Wish we lived closer so some of us could pitch in. You have a lot on your plate right now.
Your friend, Cindy

Well, it's been a while since I've checked in on the forum. Needed a break to just live in the moment and not think about MND's. Although those of us that live with them, are reminded of life, as I often say, "Life from the inside out.".

I'm doing quite well. Life is getting slower and taking more effort. Don't get out as much as I use to and still, I always seem to find life coming to me. Friends, family, coworkers and all the birds...still feeding the birds, especially the hummers...frantic, territorial little barkers in the sky. ha! They make me smile.

My mom did die, I was able to lay next to her in bed during the last days...she always smelled like fresh peaches with cinnamon...It's been a year and there are times I think to ask her something and she's gone. I can still her reassuring voice inside me though. I sure miss her.

Our daughter now has triplets and I'm the proud grandma...although I can't pick them up and carry them, I love to lie down on the floor and watch them, talking baby garble with them...Found a small power chair to travel with on the plane so we can visit more often. My husband just pulls it apart and loads it in the back trunk of any rental car.

Our son got married...I did the arrangements with sunflowers, hydrangeas, roses, various other flowers and lavender from our 3 acres. Everyone went around cutting long stemmed flowers and evergreen branches and when they brought them back I put the arrangements together. What fun!

Still working...it helps keep my mind alive and thriving. Have a woman who works with me...she will write when my fine motor skills are shot. My voice is not affected unless I get tired and I get breathy and hoarse. Words are a little slower but I'm still able to work, which I am grateful for.

Life seems to speed by and yet some days seem to last forever. Life is savored in smaller bites now.

Anyway, thought I'd drop by and say, "Howdy". All the best! Frizz

Frizzel, I joined the forum while you were away, and I just wanted to say that this thread was very interesting to me. Thanks for breathing it back to life! :smile: