[Martha Whitaker]

I have a 4 almost 5 year old granddaughter and a19 month old grandson. With the 4 year old we describe my ALS as Grandma ‘s muscles are getting weaker and there are a lot of things she can’t do anymore. We emphasize that I still love her and we still find things we can do together. She remembers that I used to read to her but now I can’t. I recorded some children’s stories before my voice was gone so she can remember my voice. I use my digital voice to talk to her . We are very open about my feeding tube and she wanted to help her mom with my feeding yesterday.

The grandson and I are alike , we both drool, can’t be understood clearly and for a while we both had walkers until he learned to walk. We find nonverbal games to play like hiding a toy under a napkin. He loves to crawl up on my electric scooter and beep the horn.

We found 2 books we use: “But She Can Still Love ” by Amalia Flecksteiner and “And Love Speaks ” by J L Blair. We went to our public library, gave them a list of books and requested that they get some children’s books on ALS, and they did. There are other books ” Walk Like a Penguin ” and “When the Stars Come Out”.

We try to be open but age appropriate but not mention death just yet.

[Martha Whitaker]

We flew across the country to see the Redwoods. The airport security went fine, be sure and contact TSA cares ahead. The funny part is the wheelchair assistance in Denver pushed me at full speed right into crowds. My husband and daughter had to run to keep up . The arrival airport was so small it had one gate and no jetway. The poor attendant who had to bring me down the outside ramp, backwards. The Redwoods were amazing and I was able to navigate the trail on a rental scooter. Travel while you can

[Martha Whitaker]

I have had a wonderful experience with the Duke clinic. I go in with questions and they are helpful with giving me ways to adapt with eating, mobility, daily living, speech and more. They recommend big changes as needed, such as feeding tube and ventilator and don’t scare me with them before I need them . Everyone is friendly and helpful. When I have a concern I message them and get a response that day or the next. The only draw back is clinic days are long.

[Martha Whitaker]

I have been on Relyvrio since February  with some side effects. Here is what helps me

For the taste  the first 2-3 sips thru straw are bad tasting,  after that  not so bad.

Make sure room temperature  and let sit for a while.

Use a straw

Distract myself by checking email  or watching news

After dose drink some milk, eat chocolate or  peanut butter.

Wash lips  or coat lips with toothpaste,  then brush teeth,  as after taste  lingers

listerine strip  made it worse for me

Laugh and Sing in your head “staying  alive,  staying  alive,  da, da da…”

For abdominal cramps  and loose  stools  I  have tried:

Take  medicine after  meal, follow with desert

Add more  fiber to diet

If symptoms too  bad, go to 1 dose a day for system to settle,  then return to full  dose.

 

 

 

[Martha Whitaker]

I  would say my grandchildren bring me great joy. No, I  can’t play with them like I used to or read to them,  but I can still  give hugs, have them in my lap, and watch  them play. I used to hike, but now hikes are on paved  paths in a wheelchair,  but I can still get outside and enjoy nature,  trees,  flowers, birds, and fresh air. I can still listen to music, attend  church  in person or online. I can enjoy performances in person or online.  Other things that  bring joy; reading a good book, gentle  stretches, chocolate, phone calls from  family and friends, getting cards or sending them. I like  to  make  my husband  laugh.  I try to find  3 things to  be grateful for each day. I think we adapt to  the changes  and look for things we can still do even if they are small.