Saturday, January 30, 2010

MSA, Travel, and Dining Out

Like everyone else in this world, when Dennis and I first met, we looked for what we had in common.* Travel was my number one priority, and I found that Dennis had the travel bug, too. It is still one of the most precious parts of our relationship.

Another passion we share is dining in good restaurants. We both like finding new and different places to eat and relax and have a good conversation. Add in a bottle of a good red wine and we were as happy as two clams.

Both travel and eating out have changed so drastically for us these past few years. Three summers ago, we traveled through Spain. Dennis was still able to walk (with a cane), eat anything and everything, and taste the wines in it's original state. He was still understandable, and we had many a day of great conversations over glasses of Malbec and Rioja while munching on Tapas.

Two summers ago, we visited Paris for 2 weeks. Dennis had been using a combination of wheel chair and walker for a few months, and we took his personal wheel chair along for the first time. He was still able to eat a good meal and drink that wonderful French wine. Let's not forget the desserts - he would eat at least one every day. Paris is a wonderful place to indulge, but it was becoming noticeable that accessibility was becoming an issue and travel would need to look different for the two of us.

We went to London that winter, and Dennis was in a wheel chair full time, and was having significant problems eating. He was still able to enjoy a glass of wine, but his energy level had greatly diminished. We ate fewer meals out, and spent more time at Jane and Ralph's home or in the hotel in London. Eating had become noticeably difficult - the drooling issues and swallowing problems were slowing his dining, some foods he couldn't chew and he seemed to be choking quite a bit. One evening in London we were out with Lola and we stopped for a bite. That was the night that we found out lettuce was problematic. Long story short, he couldn't swallow a piece of lettuce, choked and we all (quietly) panicked. Soon a doctor came over and a Heimlich Maneuver later, all was okay.

This summer we spent a couple of weeks in Ireland, and I knew that travel and dining would always be different for us from now on. Dennis drank all liquids threw a straw (yes, much to the Irish chagrin, even Guinness), with a chin tuck. It was necessary to chop up all of his food, and a nice, long dining experience started to become simply a long experience. By now, Dennis is using a wheel-chair full time it rained every time I needed to put Dennis into or take him out of the car. I was exhausted by the end of the trip, but willing to try another trip, once again.

Oh, there is more, but for now, let's just say that we will continue to eat out as often as we can, as long as it is before 2:00pm. We also are not ready to throw in the travel towel, but perhaps next time, we will take someone else along. Everything changes so fast, and everything gets more difficult, almost daily with this rotten disease.

Until later,
Ann and Dennis

*well, not like most everyone, but like most mature people

A New Photo

Just a real quick entry to introduce our new photo.

Dennis and I were in Dublin this summer and this photo was taken by a great friend, Poppie, in a pub. I thought it was time to introduce Dennis to the world.

Have a wonderful weekend.

Until Later,
Ann and Dennis

Friday, January 29, 2010

A Set Back

Dennis is seriously down in the dumps. Lots of negative talk coming out of his mouth. I am trying to give him space, let him dwell on the latest let-down, and giving him small amounts of positive thoughts to help him move forward.

He found out today that an electric wheel chair might just not be a possibility for him at this moment.

If you read the previous entry, you may have surmised that I did not go on this particular day to see the OT. I had expected just an easy visit, a choice for him to make, and let's call it a day. And that is what Dennis had expected, too. Neither one of us had prepared ourselves for a disappointment.

Since I wasn't there, and Dennis has not shared much with me, I don't have much information. But here is the gist of our conversation after he came home today.

Ann, "How was your day?"
Dennis, "No so ood." (Not so good)
Ann, "What happened?"
Dennis, "I rove ito e al." II drove into walls)
Ann, in a cheery voice, "Oh, don't worry too much about that. I heard just today, from Janet, that her husband also bumped into a few walls in the first few days with his new chair."
Dennis, "I ont ink I can et one." (I don't think I can get one)
Ann, "Oh."
Dennis, "an me i one ease." (Hand me my phone, please)

So I walk out and talk to Raquel. It seems it was a very disappointing visit. He wasn't able to control the chair at all. They will look in to alternatives, but for the moment he is very upset. I walked into his room (his hideout) just before I started writing this. He told me he was a wreck.

I tried more of my cheery talk, but right now he needs alone time. Truth be told, I still my alone time.

Until later,
Ann and Dennis

A Typical Friday

I admit to a big relief whenever Dennis and Raquel leave on a Friday, and I am home alone for a few short hours.

(Just as I finished writing the above sentence, Raquel and Dennis rolled back into the house - five minutes after they left. Raquel told me Dennis wanted me to come along - they were teasing me! He just needed his medications before they left or the morning.)

Anyway, after that brief interruption, I have about 10 minutes before....

Raquel just came back for one more thing, and now it's time for me to go, too. Be back later.

3 hours later

I ran some errands - I had purchased, online, a new phone for Dennis to replace the phone thrown in the washing machine (the phone I purchased was a Nextel, and I was assured by Sprint that it would work, but it did not not come with the necessary Sims card. So I asked where and how to get a sims card and was told that maybe, just maybe another store might have one laying around). Then I had lunch with a friend who wants to job share with me next year, if we can figure it out. It was a great lunch, with a really fun gal (yes, you Sheila) and a perfect two hours.

Then it was to the pharmacy to pick up a drug for Dennis. It was not in. This is the super antacid that was prescribed to Dennis after his last bout with pneumonia in December. It still has not been filled. It needs a prior authorization, because it is not formulary. The pharmacy says the doctor has not written the auth yet, and the doctors office says the pharmacy has not asked for it yet. They are both wrong.

When I returned home, I immediately called the doctor's office, and was in the middle of the call when Raquel and Dennis returned home. So much for alone time today.

But I would turn away any alone time for time with a girlfriend. And that is what made today perfect.

Until later,
Ann and Dennis

Tuesday, January 26, 2010

Alone

Dennis' afternoon PCA's car would not start today, so I missed my first Latin Fusion dance class. That's okay, I always hate the first class of anything. But I do wish we could find reliable help. It's not that Susanna does not want to work - she does. She is also excellent when she is here. And both Dennis and I like her, quite a bit, it turns out. But she is a poor young mother, without reliable transportation and we need reliable.

Raquel stayed as long as she could - she had to take her grandmother somewhere - and Dennis was alone for a couple of hours. He used to love this alone time and looked forward to Raquel's 2:30 departure and my homecoming at 5:00. Just this past fall he was alone for up to 3 hours on my work days. But today he called at 4:10, worried and anxious. He does not like being alone anymore.

Or rather, he feels anxious when he is alone.

When I returned home in a record 20 minutes (the roads were marvelous!), he was at the table surrounded by food. The first words out of his mouth were, "I anna o u ed." (I want to go to bed) He kept repeating this while I took off my gloves, coat and boots. I kept assuring him that I would be right with him, as soon as I could.

I can't imagine how this must feel. Abandonment? Fear? Frustration?

Anyway, he is in bed, comfortable, and feeling safe once again. And I am here, recording this teeny incident just in case someone may be interested.

Oh, and he ate a ton of food today - so all is well that ends well.

Until later,
Ann and Dennis

Monday, January 25, 2010

A New Conundrum

Dennis will be getting "fit" for an electric wheel chair on Friday. While I am happy about this, in so many ways, I am also concerned about the implications of this next step.

I know that the less he moves, the shorter his life becomes. Yet, an electric wheel chair will help him regain quite a bit of independence. He also has been very good about working out at the Courage Center weekly. Last week, he pumped legs, body and arms, 3 days.

Travel is still our passion, but how will an electric wheel chair impact our trips? Do rental agencies even stock accessible vans? And the airlines - how pissy will they be about an electric chair? Will they charge us an extra 3o dollars for mentioning the word? Then another 30 for scanning it by hand? And another 30 for the battery pack? And how do you charge a battery pack in another country?

Then there is the whole car business at home. Do we turn in our current leased car and purchase a new van? Or do we lease another Nissan Versa - it has proven perfect for folding up his manual chair and storing it in the back. It's also easy to get Dennis in and out of this car. But it definitely will not work for an electric chair.

In the meantime, we found the perfect computer communication devise today. It is being processed through insurance now, and will be built for him in the next week or so. In a couple of weeks, Dennis will be equipped with a new toy that will help him communicate in so many ways. I will look up the link and add it to one of my posts. It seems to be a dream come true for Dennis.

And soon we will be a 5 computer family. Some people collect pets, others surround themselves with children and grandchildren, and we have electronics. To each his own.

Until later,
Ann and Dennis

Saturday, January 23, 2010

ClonazePAM

One of the issues with MSA, and other movement disorders, involves sleep, or the lack there of. The symptoms include thrashing about, screaming and sleep talking. Dennis is not alone in this. I have heard from other care-givers that they have experienced the same problem.

Of course, this results in anyone else in the household from getting a good nights sleep, too.

I have mentioned all of this before, but I mention it again today because of the drug, ClonazePAM. I do not pretend to understand what the drug is all about, but it's a mild narcotic, a muscle relaxant, and also helps minimize the sleep disorders that Dennis exhibits. It also becomes useless after a while, and doses must be increased. It isn't covered my Medicare, but it is relatively cheap.

And I am taking it too.

My doctor prescribed it for me as an anti-anxiety drug, to be taken when I come home from work at night when needed. It does help me relax, let go of work, and focus on Dennis. It also helps me sleep better.

The last time Dennis was in the hospital, his doctor took him off of sleep medications. He felt they were a part of the problem in his infections - breathing, swallowing etc, may be inhibited by sleep drugs. Then we went to California, and for three nights I did not get a decent night's sleep. The fourth night, we both took the drug and we both slept better.

I am not endorsing any drug here. I am simply mentioning that sometimes there are answers out in this world that are simple. This little narcotic, legal narcotic, has improved our lives. There are still nights that Dennis wakes me up, but now I am able to fall back to sleep once again. And for me, that is priceless.

Until later,
Ann and Dennis

Tuesday, January 19, 2010

Life, As It Is

After two weeks of deep freeze, the weather has finally warmed up. 32 degrees, after wind chills below zero, do strange things to Minnesotans. We walk around without coats and enjoy ice cold puddles, simply because yesterday they were walking hazards. Usually warmer temps mean dreary skies, but for a few days this weekend we had warmth and sun.

Today it was cloudy all day, dry snow fell sporadically, and it was a typical, miserable January day. And when I came home, Dennis was down for the count. He was already in bed, and within and hour was asking for his night pills and "tuckage" (we have as much right to make up words as anyone else in this world). I obliged and then settled down in front of the TV and started wondering about what life was about.

I became tired, quickly.

What possible reason is there for anyone to suffer the way Dennis must suffer? Why should anyone wake up, screaming and screeching in the middle of the night because his disease doesn't want him to sleep comfortably? Why should he need to ask me, three, four or more times a night to lift his head from his pillow so that he does not suffocate? He can't eat much anymore, he is unintelligible and he can barely move from one spot to another.

I imagine I must accept the fact that life does not make sense. Neither does illness, death, or much else. I suppose the only thing that we can do is try to enjoy as much as possible while we are around. Dennis can do this and so can I. I know that each of you are able to do the same, also.

Perhaps the weather will be more cooperative tomorrow, and I shall see life differently.

Until later,
Ann and Dennis

Sunday, January 17, 2010

A New Electronic Toy, coming soon.

Friday, Dennis and I went to the speech therapist for an assessment for assisted technology. We return next Tuesday morning to meet with the salesman and find the right fit for Dennis. Hopefully this will make a big improvement in Dennis' ability to communicate.

It will, however, mean another medical device in the house.

Next is an electric wheel chair and soon a medical bed.

I do not begrudge him any item that makes his life as full as possible. However, the syringe sitting on the kitchen counter top, along with the thickener, Miralax and the pill grinder are constant reminders that someone very sick lives here. The outfitted bathroom is easily recognized as a bathroom belonging to a disabled person. And a wheel chair, walker and soon an electric chair, while they serve their purposes, loom large over a small home and once again, remind.

I am getting used to the large, overstuffed, old-fashioned, brownish-colored tilt chair that sits among our modern leather furniture and HD flat screen living area, however. Well, not really, but he enjoys his football while sitting in it, so it's okay, after all.

And naturally, more to come.

Until then,
Ann and Dennis

Tuesday, January 12, 2010

Thank You, Readers

Every once in a while, someone who has read my blog contacts me. Some are friends I have known for a long time, but most are from strangers who are entangled with MSA themselves. I want to thank you for letting me know that I am not alone and that I provide some sort of service to each of you.

Dennis did not ask for this dreaded disease, and I did not sign up to be a partner to a sick man. Each of you, MSA sufferers or care-givers, are in the same boat as either Dennis or me. If it helps you to read my writings, I am so happy. Writing this blog helps me more than you know. And I believe it also makes Dennis very happy.

So, if you have wanted to contact me, and feel it might be intrusive, I want to assure you that it is more than okay to reach out to me. And if you have responded to me, in any way, shape or form - I say Thank You! I am a woman who is happiest when I am able to be of service to others. But I also like a bit of thanks now and then, too.

My very best wishes to all of you for the coming year, and years to come.

Until later,
Ann and Dennis

Friday, January 8, 2010

I love Dennis

Oh, my. Two new problems. One - I forgot to delete the last blog entry from D's email. Two - I don't like what I just saw when I reread my last entry. Please let me attempt to explain and beg forgiveness.

I love Dennis completely and fully. Nothing that happens to his body or his mind will ever change that fact. I would love to spend all of my life with my Dennis. However, I know the chances of me dying before Dennis are very slim. Maybe, because I have been surrounded by death this past year, I am more cynical, but, perhaps, I am just realistic. But, no matter the psychology behind the way I am living my life, I still do adore this man.

I like my life, over-all, and intend on continuing to enjoy my life. I do believe enjoying anything is all about perspective taking. I also believe that almost any problem can be solved and a compromise reached.

Anyhoo, when ever you hear me complain about life in general, please remember that I love this man and always will.

Until later,
Ann and Dennis

Monday, January 4, 2010

Going Down the Negative Side For a Moment or Two

Okay, it's be real time. I will go into Dennis' email and block this entry. He does not want to see this.

He is so tired all of the time.

He is getting so stiff - every part of his body except the one stiffee he would enjoy.

He can't move one inch by himself at night.

Neither of us will give up our sleeping sedative again. Not if we want anything that resembles a good nights sleep.

This past trip was difficult. I gave up 3 hours of each day thickening drinks, grinding pills, wiping a butt, lifting and transferring and all of the other sundry duties that are not listed in the vows (that neither of us took) of a (non) marriage. Dennis, on the other hand, gave up his life each day. It's hard to find a solid reason for me to complain.

I hate this entry. It doesn't solve any problems - it just finds them. Not my style.

Until later,
Ann and Dennis

Sunday, January 3, 2010

Wheel Chair Etiquette, 101

When encountering someone in a wheel chair (or other means of assisted walking), please note the following courtesies:

  1. Please allow adequate room for turning around. A wheel chair does not turn easily. It needs room, so please take a step back.
  2. Do not cut in front of a wheel chair. This is not only dangerous for you, but also for the rider and the pusher. Besides, it takes momentum to push a chair. Every time the pusher needs to stop, momentum must build up, once again.
  3. If you are at an airport, or any other crowded place, please keep your eyes open for those with special needs. It won't kill you to offer some help. It may be turned down, or it may be accepted - just offer once in a while.
  4. If the pusher is piled with stuff (such as two suitcases, as I was recently), how about offering to push the rider for a little bit? At the very least, please don't bitch that we are in your way.
Oh, there are so many more. Wheel Chair Etiquette 101. Please feel free to offer more suggestions. I will continue this class at a future date.