My Mom was just diagnosed with ALS

[tmackenzie]

I am looking for John from Hayward. You wrote my mom and told her about your strict diet possibly slowing your progression. I am wanting to know what that diet may be. Mom was assigned a nutritionist with U of Michigan, but we cannot wait till Nov. 7 to go back and talk with her. I need to know what is best for her. She was unable to tolerate the canned supplemental food going into her feeding tube. They are trying another nausea medicine to help. In the meantime, she needs to be eating lots, and anything that will maintain her weight. It's so hard... I work the same time all these contacts at the hospital work. My boss has been great with my time off, but when I'm there soing the work he pays me for, it does not allow time to be on the phone with people who can help me! very frustrating.

 

[hangingon1]

Sorry,she is a goner, Als is unforgivable and relentless.

 

[ottawa girl]

Hi Tina,

Keep searching for answers - I wish I had some tangible suggestions for you in that regard, but I know nothing about nutrition via peg tubes. Maybe you can PM Sadiemae and Brooksea. They have a ton of information and are super helpful.

On another note, have you been able to get the internet hook up done so that Chris can join us? It would be great for her.


Hanginon -I know that you are grieving; do you have suggestions that would help Tina's Mom keep her strength up?

We newbies need support as we strive to remain positive.

 

[vzandt]

Tina can you e mail them.sometimes they get back to us pretty quickly when we have questions.

 

[brooksea]

tmac, do you have a blender that will puree foods? If you don't look into the Vit a mix.

You can blend regular foods, nutritious liquids and add high fat content, which is essential for pALS maintaining weight. I would add heavy cream, butter, cream cheese. ANYTHING! This can be diluted, if necessary and put down the tube.

 

[momap53]

Check with vita mix to see if they are still offering a medical discount with a script from the doc stating that she has a peg. With a script you should be able to deduct the purchase a medical expense whe filing taxes

 

[highspirits8]

Hey there this forum has been so helpful through my mother's in regards to helping her and being able to share stories others post. She is a Spanish speaker and reader only. This has put me in a similar situation as yours, in regards to our mother's not having the opportunities to see this website firsthand. I have posted, read & responded a fair share of times throughout the last year since her diagnosis. The stories I have read have not only given myself emotional strength, yet have also empowered her drive and will. My mother before felt as if she was fighting this disease by herself. Once I told her of the stories on the forum her spirit I felt was lifted. This was because she felt she was now apart of a family/team fighting against ALS. The stories brought emotional comfort to her too, this is why I am greatly grateful to these forums. Your mom not having access to the internet should not be an obstacle for your mother. See it as a way to come closer to your mother and educate her with knowledge of ALS (& experiences) and spiritually guide her.

If you ever have time look at my posts on my profile. Maybe they will help you, because even the replies I received from others helped me greatly. As I am sure the replies other member of this ALS community have helped you through this post you have written.

Thank you for your time.

-Juan Lastra

 

[highspirits8]

Oh ya regarding blended foods. My mom has the Bulbar form of ALS, this led to her having to get a G-TUBE. She has lost a lot of weight from 160 to 110 lbs. She now takes a MASS GAINER WHEY PROTEIN SHAKE. It has 1,850 calories and is loaded with a whole bunch of vitamins with 100% of daily values at least. Almost any vitamin you can think of from VITAMIN A to K (B-3, B-6,B12)amino acids the whole "shabang" hahaha. She is no 122lbs. oh ya we also now blend any meal into a very strong blender. We do this for 1 minute total to leave minimal chunks then I strain the remaining liquid and bam the perfect G-TUBE MEAL! .

Oh ya the MASS GAINER shake is called "SERIOUS MASS" By: Optimum Nutrition and for a leaner protein with just as many vitamins try "Super Whey", I dont remember the brand but my mom use to take this before her throat lost the ability to swallow. I really hope this helps. Oh ya and make sure to bargain shop for the shakes. The Serious Mass 12lb bag goes from $45 to $100 depending on where you buy it. The Super Whey one comes in 5lb bags and go for $40 to $90. Oh ya the internet is where you will be paying in the bottom side of the price ranges.

Hope this helps

-Juan Lastra

 

[tmackenzie]

Thank you so much... I sometimes feel so dumb... a whey protein shake! That is perfect! I go see her on the weekends now and am going back again this weekend. I will certainly bring the protein shake mix. She can handle that. She can still eat 'soft' food. SHe ate well while I was with her last weekend. She actually gained a pound she lost back She's now at 140. Last year she was easily 240-260? Things are coming along for her though. She has a lady coming to see her this Friday from the ALS Asso. She will be brining a borrowed wheel chair and a Dynovox (sp) machine. I am currently working on a benefit for my mom to help her with the costs of running all this equipment. I did find out, I can get her internet for $65/monthly and I found a laptop for her. I just need to get help from the family to help me pay for it all. So far I've been buying everything she needs and the trip expenses. I do not mind, but I don't have alot of cash either. I am getting letters out to everyone I know asking to help contribute towards the monthly internet expense. I think it is VERY important for her to get on-line.
Thanks so much for all you support... I am just so grateful!

 

[highspirits8]

Try to get her one with lots of vitamins! haha If you ever need any advice on certain things you eventually have to confront do not hesitate to ask. Oh ya how does the speaking machine work? I am interested in getting one for my mother since she cannot talk much at all. Thanks

 

[tmackenzie]

Hello everyone.... well, I can get her internet via Excede Satellite Internet. It will be $60/month. I found a laptop for $278 that would be fine for what she needs. I am opening a benefit account for her tomorrow at her credit union. I mailed (my former boss) a publisher of her newspaper a letter. I'm hoping he'll do an article or something so I can get her help to pay for these extra expenses. I also composed a letter to friends and family asking for their support. I know the $60 might not sound like much, but for her it will be. They live off a generator and some solar panels, but mostlly the generator runs from gas. She now has a Bi-Pap machine (which she loves) so she needs that to run as often as she can. I have not seen the Bi-Pap yet nor the Dynavox that a lady was bringing her today. I am going to see mom tomoorow (I can't wait). Last weekend when I was with her, we had such a nice time together. I made her banana cream pudding w/strawberries and soft chocolate chip cookies. This weekend I plan to make this creamy, cheesy potatoe soup for her. I know she will love it! I talked to her during my lunch hour today and she sounded good, and said she was doing good. That made my whole day! I finally got her Medicare approved (woo-hoo)! Things are looking up :O) Maybe by next weekend - she will be on here gettign to know you all. I know it will help her so very much to hear what to eat and do, from people who have experience going through what she is going through. This will work out and I will get her online! Till then, I hope you all have a blessed weekend. :O)

 

[Kevin Fernandez]

just forward your mom address, definitely we'll mail to her.

 

[AKjo]

Kevin: REALLY? This is your first post on the forum and you are asking for someone's personal information?

 

[Jhutchison]

This is my first post, but your post made me register. My mom was just diagnosed with ALS last month. She's 63. I too would get frustrated talking to her on the phone. Mom was forced into retirement due to her slurring. Hers started in April and other than short one syllable words you can't understand her. She lives about 100 miles from me, but my brother lives close to her. She's getting weaker by the day and fell yesterday. I tried to get her to move closer to me, but she doesn't want to. I have three kids, 8, 5, and 2. As you can see, our stories have a lot of the similarities. I am struggeling with this every day. My mom was always the loudest most vibrant woman in the room. I just wish I would have known that her voice was going so I could have asked her so many things to hear her responses. She did some recordable books for the kids a couple of years ago that mean the world to me now.

I wish you all the best. We go back to the ALS clinic on the 28th of this month to get the estimated time left. I am dreading it so much...

 

[tmackenzie]

This is my first post, but your post made me register. My mom was just diagnosed with ALS last month. She's 63. I too would get frustrated talking to her on the phone. Mom was forced into retirement due to her slurring. Hers started in April and other than short one syllable words you can't understand her. She lives about 100 miles from me, but my brother lives close to her. She's getting weaker by the day and fell yesterday. I tried to get her to move closer to me, but she doesn't want to. I have three kids, 8, 5, and 2. As you can see, our stories have a lot of the similarities. I am struggeling with this every day. My mom was always the loudest most vibrant woman in the room. I just wish I would have known that her voice was going so I could have asked her so many things to hear her responses. She did some recordable books for the kids a couple of years ago that mean the world to me now.

I wish you all the best. We go back to the ALS clinic on the 28th of this month to get the estimated time left. I am dreading it so much...

jhutchinson, I really know how you feel. Our moms are the same age and we are both not close enough to be right there for them. It is hard understanding my mom, and just when I am able to understand her and get used to it... her voice gets even worse. It has been going downhill this past month rather quickly. We are waiting a Dynavox machine, but it seems like a waiting game at this point.... I am loosing my hope.