Sex & ALS

Dear Friends & Family,

OMG! Really? Cindy is going to write about sex? Yes, really. This topic came to mind a few weeks ago when Curt & I were discussing the blog. At that time, I had written a post and wasn’t sure if I should share it. “Is this too personal?”, I asked Curt. He read the post and said “Go for it!” He told me that he wants to help people to learn from our experience. Whether it is friends, strangers or other people battling ALS, he hopes they will learn from our blog. As a happily married couple, once diagnosed with ALS, one of our early questions was “How would ALS affect our sex life?” Well, here it goes.

Physical Facts: Not long after he was diagnosed, I googled ALS & sex. I found very little information on the subject other than the following two statements. 1. ALS does not affect the ability to have an erection or orgasm. 2. You must have a partner who is supportive and patient. I wasn’t sure what that meant until now. It means that because Curt can barely move his body, all the work is up to me. Not a big deal. We are happy to know that he can be sexually satisfied until the very end.

Emotional Facts: This is the hard part, for me at least. Deep down inside, my subconscious is telling me to pull away and emotionally disconnect from Curt. Curt is dying, and my mind is trying to protect me from pain and preparing me to be alone. It is a constant struggle for me to fight my mind and stay connected. We have discussed this and are not sure what to do other than try to ignore the feelings and choose to stay connected. Now, more than ever, Curt needs love, physical love and touch.

I read that people battling ALS need touch more than ever. It stated they are returning to almost an infancy stage as they have to be fed, bathed and cared for. They need to be held and cuddled. At the same time this need arises they are in a wheelchair which becomes a big barrier between people. It is hard to give someone a good hug while they are sitting in a wheelchair. Curt & I try to use every moment that he may be standing (brushing his teeth, showering, or being dressed) to pause for a nice long real hug. We can no longer walk side by side and hold hands or drive side by side holding hands. We have to find other ways and times to hold hands. Curt says he feels connected when I shower him or comb his hair. That is why I continued to take care of these needs even though we had a caregiver. I love him more than words can express and I am so sad for what he is enduring. The least I can do is put aside my subconscious thoughts and keep him physically and emotionally satisfied as best as I can.

Spending time with Curt and as a family is what life is all about these days. We had a great Easter weekend plus a few more days at Lake Nacimiento. The weather was gorgeous and we were blessed to be with family and friends. Clarissa & Cayden got to take the boat out on the lake wakeboarding with their friends and no adults in the boat for the first time. They did great (Curt taught them well) and because they were so responsible, it looks like they will get to do it again next time! Weeks before we left home for this trip, the kids mapped out a place for a zip line over the lake and ordered the needed supplies. When we got there Cayden and his friends spent hours setting it up and then everyone joined in for the fun. WOW! Super Fun!

The remainder of Easter break was filled with Cayden’s volleyball game, chores around the house and watching the kids come and go with friends. Cayden had a pool party on Sunday to celebrate the last day of school break. This warm weather has been amazing. Curt is loving the sunshine! I was excited to meet my new friend Kristina for coffee, whose husband Russell is also battling ALS. It is amazing how we “get” each other. It is reassuring to know that the feelings we are experiencing are alike and therefore we feel more normal. I was excited to see her again along with Russell and Mitchell (5), on Saturday as they returned from Easter break visiting family in Tennessee and Pennsylvania. Russell is struggling, like Curt, with the devastating affects of ALS. Please keep them in your prayers also.

Curt’s mom, Barbara, resigned from American City Pest & Termite last week in order to spend more time with Curt and to help take care of him.

I have really learned through all of this that I cannot predict our/Curt’s needs. It is best to be aware of what’s to come, and then just wait until a need arises and somehow it all works out. We really needed a caregiver in January and we had a great one until April. When she left, I just kind of waited to analyze our needs, and then Barbara became available for Curt. I used to be such a big planner, super organized and ahead of schedule on everything; but with his symptoms, you can only plan so much. Mostly we are forced to wait and see what happens. God has blessed us time and time again and I have learned to be patient and trust that our needs will be met. Your prayers for us are being answered in that we can still face each day with Faith, Hope and Love. Thank you for praying.

May is National ALS Awareness Month. And guess what? Curt was selected to be featured nationally on the MDA website! Too Cool! Read his story, he will be featured on Friday, May 6th. Click the link and then Curt's photo next to May 6th. MDA Presents - ALS: Anyone's Life Story There will be a new person featured each day in May, we are interested to read how others are handling this horrible disease.


Curt, Cindy, Clarissa, Cayden & Corbin
Lake Nacimiento as seen from the deck of the Lake House

The Lake House

Decorating Eggs

Cousin Ethan, Bill Ziemke, Mom, Me, Curt, Cousin Alyson, Mike Casey, Dad

The kids hunted for Easter Eggs along the hillside and filled their Easter Bags

Our Family

The Zip Line

Mike & Bill strapped Curt in the Kubota and took him off roading.

Curt at his best!

Zac, Emily, Clarissa, Danielle, Corey, Connor & Cayden




Celebrating Secretaries Day - today at PF Changs
You guys are the best! Thanks for your dedication to American City Pest & Termite!


nasaman said...

Cindy & Curt -

This week's courageous letter deals with a very important topic that should help thousands of ALS victims as well as their families and friends -- THANKS! And the Friday, May 6th article & photo at "MDA Presents - ALS: Anyone's Life Story" is also terrific! Where was that fascinating picture taken?

Denise Kennedy said...

Thank u for posting husband was diagnosed with ALS on 12/4/12. Bubar Onset. This was helpful and inspired me, knowing what we face.

Denise Kennedy said...

Bulbar Onset.

Denise Kennedy said...

Thank u for posting husband was diagnosed with ALS on 12/4/12. Bubar Onset. This was helpful and inspired me, knowing what we face.