Let’s Talk About Sex... with ALS

Where to start…  First of all this isn’t just about the act of sex.  It’s about intimacy in a relationship when something like ALS enters unwelcomed. I can see how one might think the sex aspect only applies to young or new relationships. That’s not the case.  Yes our sexual activity has changed over the years. We haven’t been doing what we did, or as often as the first several years together for a while now; however we have never let the flame go out. We’ve always had fun and made fun. We’ve been able to laugh together about our aging bodies, and still love them.

I’m not saying I wasn’t dreading getting older, but I never wanted the lights turned off before undressing. I never felt ashamed of my aging face and body with Tony and vise versa. Now I will admit to giving in to the public standard of wanting to look 22 forever.  I used prescription creams, had facials promising young glowing skin that will peel away years. I kept my body up with yoga to keep a toned attractive body. The time I most let my body go was in my 20s and even into my 30s with a little extra weight. I had much more important things to contend with than my looks, but even a little fat looks OK when you’re young. I really started getting it all together in my thirties with eating healthy and working out.

Our plan was when I turned 40 we were going to have some fun, really live and enjoy life. Our youngest turned 18 when I was still 36.Our kids would be young adults, but self sufficient for the most part. It would finally be time for us to do our thing after our lives revolved around them for so many years. It was exciting to look forward to.

Starting at about 38 we were preparing for our time ahead when I hit the big 40. I even started checking into maybe a dab of Botox here and a tad of filler there. I hadn’t fully made up my mind, but I was checking reputations of all the great deals I’d seen advertised everywhere.  I wouldn’t choose just anyone. We’ve all heard the horror stories and seen the people who can’t smile or give you any indication of how they feel because their face is frozen. I’ll take a line on my forehead over that any day. I wanted and more importantly needed my facial expressions. If I was going to do this, it had to be with someone who knew what they were doing and understood the meaning of, just a little. The only other thing I was considering if money allowed was having my breasts lifted and reduced. Actually this was almost a medical necessity, large breasts are heavy and all the years of toting them around took its toll, and the bra indentions on my top shoulders weren’t sexy or comfortable. It would be so freeing to have smaller breasts that stay up where they belong on their own.  We were thinking, talking and excited about the new adventures, the fun we were going to have. There was a bump in the road a few months before with my back injury. I was working hard to get and keep it under control and at the time I fully expected it would happen. That’s not what made our plans come to a complete halt forever.

It was a month, almost to the day before my 40^th birthday that completely ended all of our plans, all of them, not just the fun life for us. We had plans for grandchildren adventures too. Everything ended or changed March 28, 2012, the day I learned I have ALS. Here I am practically trapped in my bedroom typing this with only days before I turn 41. This was not part of the plan!

Tony never cared whether I had any injections or breast augmentation. He has always loved me and been attracted to me just as I am, and faithful too, beat that! This means so much to me now that my body has changed so drastically. What’s new is that I have changed. For the first time, I don’t like him seeing me naked. No matter how much he tells me I look just as beautiful to him. I never thought I would feel this way with him. There were times when I put on a few pounds and didn’t feel the best about my body, but I still felt sexy with him. I could still walk sexy and talk sexy.

I think I’ve said in another post, ALS changes absolutely everything. I can’t disguise or direct attention away from anything about my body now. I can’t suck anything in or talk, walk, sit or lay my body in any position that resembles sexy, and I certainly can’t talk sexy. I just feel ugly from head to toe now. Our long burning flame is just a light breath away from going out. We’ve been talking and are determined to not let that happen. It’s not easy though.

My looks and confidence aside, there are other obstacles. I have much less control over movement. I am much less of an active participant because of weakness so it is awkward for us both. It’s also not sexy to need to stop and put on a ventilator mask, even though I’m lucky to have one of the quietest vents, the sound of mechanical ventilation is a mood killer. It is for us. So it has become something we avoid.

There is another huge factor that shouldn’t be left out. Tony puts so much energy into taking care of my needs and worrying about my safety that it’s easy to stay in that mindset. It’s not easy being my caregiver then switching to my lover. He’s scared and grieving just like me. Neither one of us have sex on the mind very often.  I think I’ve given away enough personal details, I’ll just leave it with I can’t do about 80% of what I used to do, We’re both grieving and constantly preparing for the next new hit from ALS. That’s not a recipe for an evening of making love.

I have peace in knowing Tony is here because he loves me no matter what. We did go a long time not talking about this. A big mistake, difficult or easy topic, communication is a must. Talking has eased both of our minds. We have both shared our feelings about this change while being honest.  We went from avoiding the topic to thinking of ways to be intimate without fear. Remember, intimacy doesn’t mean a sex act must be involved.

I spend a little time running my fingers through his hair while he drifts off to sleep. A few minutes here and there of me leaning on him while sitting and letting him hold me securely in his arms. These things are powerful. It renews our desire to fight this fight together, it reminds us both of the bond we share that can so easily get lost in the mess that is ALS, It also reminds and allows us to express the love we share and sometimes shed heart healing tears together. There will come a day when I can no longer run my fingers through his hair. We’ll have to find another way without losing ourselves. Like everything else in a relationship, it will take effort and communication from both of us.

We’ve been through a lot together and kept our love intact. Our love will make it through ALS too. It won’t play out like a fairytale but life is not a fairytale.

Until next time, take care,

April[subscribe2]

 

 

 

 

 

 

 

Death with Dignity… My Thoughts

To my loved ones reading this, I want to say this is not a reflection of my intentions at this time.

It is something I believe most people with a terminal illness like ALS have had cross their mind. At this time a person diagnosed with ALS is aware they are dying, and it will likely be an uncomfortable slow death. I know there are a lot of patients who have chosen invasive ventilation and are happy, comfortable and living a life with quality and purpose. I’m thankful this life extending option is available.

There is hospice. Another thing I’m thankful for. I’ve experienced the care they provide and I commend all nurses who take on this responsibility. They can’t by law intentionally speed your death. They do everything they can to make death as comfortable as possible for the dying while educating and comforting the family. Even with the best efforts it is no guarantee you will have a comfortable death, or that they can predict the exact time or even day you will die.

You can put a do not resuscitate-DNR order in your Advanced Directive or Living Will, but if you’re at home and an ambulance is called because of respiratory crisis, unless they are shown the document, you will likely find yourself on an invasive ventilator no matter how clear you’ve made it to family and your doctor. It’s possible you will be even if they see the document. EMTs are trained to save lives and they do it well. I also commend them for all they do; however if you’re a terminally ill patient suddenly stuck with this life support that you made clear you didn’t want, you’ll surely not comfortable. You can still choose to have it removed, but when and how now has to be decided. Something you may have really wanted to avoid is your chosen legal agent being forced to make this decision. Choosing who can make decisions on your behalf early on is highly recommended so that your wishes are met. This doesn’t mean the decision is going to be easy for them if it comes to that.

I’ve given examples of what can go wrong even if you do all the right things to make your wishes clear, it’s no guarantee. You can still end up vented whether you want it or not.

Some benefits of assisted death: First is that it’s in your control. You know when your quality of life has reached the point of outweighing the benefits of living for you and know you will die painlessly within a few minutes. You can choose to have loved ones with you or not. It also gives your loved ones the ability to choose to be there or not. If it is decided others are to be present, you can choose a date and this gives them time to prepare emotionally and take time off work in advance instead of always knowing the call can come at any time.

I’m aware that one of the biggest obstacles for the terminally ill, even if they’re in a place that allows death with dignity is Religion, even if it’s not the belief of the person dying. Not wanting to go against a loved one’s belief is a huge deciding factor. A dying person usually doesn’t want to do something that leaves their loved ones in emotional despair. So they suffer on.

Many consider death something that should be left in their God’s hands. To me this makes no sense. If you would die without mechanical ventilation, isn’t that overriding God? I just don’t see the logic in it being miraculous to keep a life going that God obviously intended to end, but it’s not ok at all to end the suffering of a life God also obviously intends to end.  There are premature babies born every day with no chance of survival even with advanced technological care. That indicates this is God’s plan, his will, to end this life. When very aggressive methods are used to sustain this life, I never hear of anyone condemning the people involved. They are given hero status and it’s considered a miracle.

How can you rejoice in going against God’s will by saving a life God obviously is ending, but yet you damn a person to hell for deciding to end their life in a humane way when it’s a life that God is also obviously ending? I see no logic in that.

I have important decisions to make. One of the biggest factors is how my family is affected. I believe ultimately I will be supported in whatever I feel is best for me.

I think it’s wonderful we have and use the advanced technology to save a person that will otherwise die.

I also think it’s wonderful to have a choice to end a slow suffering death in a very simple, affordable and comfortable way. I emphasize the word choice.

These are thoughts I’m dealing with amongst many others, and that’s what this blog is for me. It’s an outlet for my thoughts and feelings. I’m thankful to not be progressing super fast, I am progressing though and I do have important choices to make.

Until next time, take care,

April

 

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ALS Minute By Minute

I have several posts in mind I want to do, but I want to do them right. I want to have the facts straight. The last thing the ALS community needs is more false information floating around. I have no planned post today so I'm just going to let my inner-thoughts flow. Everybody has good days and bad days. With ALS there are still good and bad days, but there is also what I call minute days. These days are usually busy and a lot going on, like a doctor's appointment, I want to shave, I need my nails clipped, and just too many unexpected things happening. Things like I can't reach the top shelf of my closet now, so I have to wait 3 minutes for Tony to get off of the phone, and during that 3 minutes I try to scoot with my weakening left leg to get something else accomplished only to realize I can't reach the the shelf where I keep my face wash. Then all I can think of is all the things I can't do. Tony stepped away from me with everything seeming just fine, then comes back in 3 minutes to me in a panic.

Today has been a real minute day. I've had minutes of feeling so much love from family. I've laughed. I've looked forward to things coming up with excitement and enthusiasm. I've felt scared as hell. Desperate for things to get accomplished so I can do things I want to do before I lose the ability.  ALS changes everything, and I mean everything. ALS is horrible, I don't think anyone would dispute that. It does have characteristics of other terminal conditions, but something unique to ALS is that  there is absolutely nothing to offer, no proven statistical percentage of a chance for a cure. I know there are clinical trials aiming for hope, but they're just that, a trial. Every person with ALS that's participating in trials is clearly told, "This is not meant to help you in any way." That goes for any trial for anything, and you understand they have to say that. We already know.

There is no, "We can try this treatment, but there's only a 50 percent chance it will save your life. It's hard to go through so it's up to you if you want to go for this or choose to live your shortened life as you want to." Obviously this isn't an actual quoted statement, and obviously cancer comes to mind reading it. It's also obvious that would be devastating to hear. I've lost family to cancer and seen it up close. It's devastating for the patient and the family. I want to make that clear. This is in no way a, cancer is nothing compared ALS, post.

My point is I don't know of any disease, other than ALS, that you are given absolutely no offer at all for for a possible cure. Now you'll hear people, including myself, making statements like, I won't go down without a fight, ALS hasn't met the likes of me, and other similar statements. But we haven't had an ALS specialist tell us, "We can offer you this to possibly save your life, it has saved others." Unless they're seeing a snake oil salesman. The only FDA approved drug for ALS is Riluzole. It's about as far from a cure as you can get. It offers up "possibly" a few extra months of life. Life that is, by the time you're at those last few months, hardly a life you can live on your own terms.

The FDA can help by allowing ALS patients to take higher risks in clinical trials, and by letting us move through trial phases faster. We're waiting on them. I hope to get the news they've made that decision soon. Please!

To add to the fact that we know there is no cure, we are also always aware that we're getting worse. The average life span given is 2 to 5 years. It's not like we can say, "Well I'm going to spend two to five years skiing, jumping out of planes, driving across the country, do a little globe trotting, then hit up vegas before checking out." If you are lucky enough to be diagnosed early in progression, you best get what you want to do out of the way fast because you have a lot of planning to do. You are, in different orders, going to need a very expensive power wheelchair, a wheelchair van, a wheelchair accessible home. You'll need to have somebody dress you, feed you , give you a shower, wipe your ass, pick your nose, I could go on but I think that's enough.

You have decisions to make about the options of extending your life. You can't eat anymore? Well you'll starve to death, or you can have a feeding tube placed for nourishment. You can't breath on your own anymore? Even with that non-invasive mask you wear 24/7? Well, you can have a tracheostomy. That can really prolong your life for a very long time if everything goes well. Great! Don't forget, that will just keep air flowing, but you will need very expensive care 24/7. Also don't forget, these things may prolong life, but they don't stop progression of the disease.

You will with no doubt reach the point of total paralysis except your eyes, but great news! You can still use your eye gaze speech device to enjoy conversations and let someone know if you're uncomfortable or need that little spot on your ankle scratched. It turns out it's not as uncommon as once thought to lose the ability to move your eyes too if kept alive long enough. That is called a complete locked in state. You are completely aware of everything around you, but have no way of expressing a thing, nothing. So you will want to be sure and let it be known way ahead of time what you want before that happens.

This was a roll out of my inner thoughts in real time. We all have our minutes, ALS or not. Priorities and perspectives just change after ALS or any dramatic, life altering change. I'm still fighting like so many others!

Until next time, take care

April

 

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A Gain For A Loss

OK, at the end of yesterdays blog post, I mentioned lifting up a bit. I feel like adding a little sugar to the spice.

When I was first fitted for my AFO, It was so nice to be able to walk with a barely detectable limp. This came with a price I was very willing to pay, actually already paying, my shoe options were limited.

Anyone out there just getting an AFO, I did learn that New Balance and Sketchers tennis shoes worked best for me. The shoe needs to be wide enough for the brace, especially at toes and deep enough at the heel. I don't know if these shoes will be best for everyone. I had a solid fixed AFO. I where a regular 7 shoe size and I have a narrow heel. To the right is a picture of my AFO in my Sketchers.

Now I figured I would be getting my drop foot all fixed up, and this was all temporary. It turned out to be the first of three adaptions to keep me walking. (to follow was adding a cane, then rollator.) so I was pretty disappointed to learn this was permanent. Then, what about my beloved shoes? My choices became steel toed construction boots or tennis shoes that took a lot of trying on to find at first. I'll take the tennis shoe, thank you.

When I recently lost the ability to walk I remembered reading online a while back that the best thing about being in the chair is you can wear  the shoes want. How exciting! I want  to go try on shoes now. I will be hitting up thrift stores on Saturdays with my Mom, and I've been looking at amazing online deals for fun.

I've always been a thrifty shopper, but I do love to shop. If I'm not at a thrift shop, I'm a TJ maxx, Marshalls person usually. I love to shop online too. Now that I can't just hop in the car and go to these place I have a lot of fun shopping online. Budget is real tight right now, so there are no big shopping sprees, but I've always enjoyed real window shopping too. It's just as fun on line to me.

I still have pretty good use of my hands overall, especially my left, but they've gone enough to make putting my contacts in pretty difficult. It's been so long since I tried, I'm not positive I still can. It would definitely be a time consuming chore.

My youngest son, Tyler, was due for glasses not long before my diagnosis. He bought some from an online eyeglasses store, Warby Parker, while visiting home. It's pretty neat because you can look through their collection and chose up to 5 pair you like and they'll ship you the frames with Plano lenses to keep up to five days and then return in the box they send. Free shipping both ways. He chose the Langstons. I really needed a pair of glasses so I bought the women's version of his Langstons. These glasses were just under $100.00. The least expensive pair of glasses I had ever bought. The only downfall is for us aging people needing a little help reading is they don't offer progressive lenses. Now $100.00 seems expensive.

My newest guilty pleasure is buying glasses online at goggles4u.com, they usually have great deals, especially on their home brands. I have bought glasses from there for about $10.00. That includes shipping, and I have a strong prescription. That doesn't include progressives, but they do offer them. I love spending the $10.00 and trying all different styles and colors. I tend to like them on the wide side for my face. There are several online glasses stores that have $6.95 and up. zennioptical.com is another one worthy of checking out. Just be sure to have your pupillary distance correct. If you already know your prescription and don't need an eye exam, Walmart optical is good about measuring it for you on the spot if not busy. That was our experience.

Above is a small collection of my inexpensive glasses.

 

That's 3 ways you can turn a loss into something new. They're fun even if you didn't lose anything.

1.Newly in a wheelchair and no longer need an AFO? Now you can wear any shoes you like, plus they stay clean and won't get worn from walking. Find a nice buy, sell and trade shoe store and you'll get top dollar for your shoes when you take them back in great shape!

2. Have you lost the ability to drive but love to go shopping, or just browse? Get on that computer and shop or browse your heart away!

3. Are you a contact lens wearer and need to change to glasses?  No matter your budget, shop away online!

I hope any of this information is helpful to someone.

Until next time, take care,

April

 

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