Women with Motor Neuron Diseases

[Rhonda]

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

 

[Frizzel]

Hi 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

 

[CindyM]

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

 

[Rhonda]

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

 

[Frizzel]

Eye lids drooping

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.....

 

[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

 

[Peg B]

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

 

[Frizzel]

Marvelous Margaritaville

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

 

[Peg B]

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

 

[KateO]

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?

 

[Frizzel]

Welcome KateO

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

 

[Rhonda]

Hey Girls,

I went 11 months without a period, thought I was home free then in June I had a period 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

 

[Frizzel]

Supplements

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

 

[liz]

Welcome

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.

 

[Frizzel]

PM 's

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.