Women with Motor Neuron Diseases

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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.
 
Frizzel said:
...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 which overcomes the strength/dexterity problems in my hands.

John
 
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Bandits

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 :)
 
Honorary Members

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
 
Brace ourselves.

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
 
Bran Muffins, M-mm Good!

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 a site. 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
 

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Six Week Bran Muffins

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?
 
KateO

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
 
Moving arms

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.
 
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