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Wednesday, November 20, 2013

Changing With the Seasons

The trees in our yard put on a gorgeous display this year, but now all of the leaves have fallen. Last week end, young men and women, and their leaders from our LDS Ward, came over and raked and bagged every leaf.  Our good neighbor, Howard Schmidt, came over and cleaned and unplugged the rain gutters on my house. They were so stuffed that during a heavy rain storm I had a water fall landing on the soil next to the foundation on my house.  Over time, we developed a sink hole that opened up under the steps on our front porch.  Our good friend, John Jones, joined Howard and assessed the situation and came up with a solution.  The following Monday, John had some people come over and pour concrete mixed with clean dirt under the porch.  We have great neighbors and friends.  I'm not sure what we would do without them.

With the change in seasons we have made a few in-door changes around here.

We have finally moved down stairs to the main floor.  It is working out really well.  Our former office, now bedroom, turned out really nice and using the shower in our remodeled euro-style bathroom is great. The entire bathroom is tiled to the ceiling. (photos below)  It turns out that I only go upstairs once or twice a week (if that often).  I can still pull myself up the stairs if I want to, but I'm glad I don't have to. When I go down the stairs I scoot down on my butt like a toddler.

As I mentioned in my last post, I have a little scooter that I can buzz around on. Riding around on the scooter saves the energy that I would waste shuffling around. Last week a guy came to the house to start the order for a power wheelchair. I don't really need it yet because I have the scooter. I am trying to follow the advice that we receive at the clinic. I will eventually need the power chair so we are just staying ahead of the game by beginning the ordering process now instead of waiting until it is a necessity.

Several months ago our friend, Anne at the Muscular Dystrophy Association (MDA), told us that she had a wheel chair lift in their storage area.  She said that it was just taking up space and asked us if we wanted it.  It is what they call a porch lift.  It just lifts a chair (or scooter) up so you don't have to worry about the porch steps.  We have a three car garage so we had planned to enter the house via the 3 steps up from the garage. If we had to build a ramp, it would have been very long.  The ADA recommends that for every inch of vertical, you should have 1 foot of horizontal slope.  That means we would have had to build a ramp 18 feet long.  So we gratefully accepted the offer from Anne. We had a really hard time finding someone to install it for us.  It seems that the people that install these want to sell you a new one so we had a hard time finding someone to install a used one.  Kory, our respiratory supply guy, referred us to a guy who was willing to install it for us.  So we now have a nifty little elevator.  I am using it with the scooter already.  Thank you Anne!


Kevin and his voice (iPad)
I still feel like I'm in pretty good shape.  My speech has been gone for quite a while.  In March I posted a video that I thought demonstrated how my speech had deteriorated. Now, I listen to that video and I realize that I was a silver tongued devil.  Now I'm a devil without a tongue, silver or otherwise.  I'd be in real trouble if I didn't have my iPad.  I have recorded some video to show you why the iPad app is so important to me.  Check this out:

http://youtu.be/KjPrBnU2VSg

I still feel good. I am fortunate that I don't have any significant pain symptoms other than the occasional muscle cramp.  I seem to be losing strength on my left side faster than on my right.  My fingers still work, as evidenced by my typing, but I have a hard time with anything that requires fine motor skills that involve my left hand.  Buttoning a shirt is a good example.  Tying a tie is difficult and forget about tying shoe laces.  On my left hand, it is really the thumb that causes the problem.  I have come to appreciate opposable thumbs. 

When I walk I am most stable when I use my stick in one hand and hold hands with Gerri' with the other hand.  Every once in a while my left knee buckles under me, but fortunately this is not a regular occurrence. I have "foot drop" in both feet, but it is much more pronounced in my left.  My legs are skinnier.  Using the feeding tube, I have been able to maintain my weight.  Because I am losing muscle this means that I am replacing the lost muscle with fat.  As a result, my pants don't have as much slack around the waist. The folks at the ALS clinic tell me that this is a good thing. Patients who maintain their weight supposedly last longer than those that don't.

We had our clinic day last Wednesday, and it appears that I am doing OK.  My lung capacity diminished some, but my oxygen levels are good.  No surprises with everything else.  Each morning I am taking an extra very small pill (amitriptyline) that helps dry out my mouth. That appears to be working, which is great.

So, all things considered, I am doing really well. We are still counting our blessings: great friends and neighbors, our super cool family, and most important of all, Gerri' and I have each other.








14 comments:

  1. Trisha Lindquist GibbsNovember 20, 2013 at 7:14 PM

    You truly are an inspiration! You are so positive & I think it is very courageous making videos & telling your story. Always following your story. I absolutely love your daughter Lindsay. My son is fighting DMD & met you at the walk. Praying for you and your family always! Love Trisha

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    Replies
    1. Thank you Trisha. I feel like I know you through Lindsay. Thanks for your kind words. I can't imagine how tough it is for you as a mom to see your son struggle with DMD. God bless him and all of you. Love, Gerrí

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  2. The bedroom is undecorated at the moment. The headboard is leaning on another wall waiting to be attached and I have things to hang on the wall. It will happen when it happens!! It is quite small but has all the room we need. The door that you can see leads into the bathroom. There is another door in the bathroom that opens into the hallway. It'a nice and cozy!

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  3. Hi Kevin and Gerri - My husband and I met you at the support group a few months ago. So glad you are getting all the support you need from MDA and clinic, and so glad you had the option of moving to the first floor. The bathroom looks awesome! You two are truly amazing. I know this is a serious struggle and trial, but you are bearing it together and bearing it with grace. My dear mom passed this Tuesday. I wish she could have met you guys. We hope to come to the group in December. See you then.

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  4. We learned about the sad news of your Mom's passing on face book. I hope that the funeral this week brings you the comfort you deserve. We have lost several members of the support group in the last few weeks. It is very sobering to lose new friends so soon after getting to know them.

    Our thoughts and prayers are with you.

    Kevin

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  5. I think about Kevin and this family all of the time. They gave me comfort and welcomed me in a time when I had noone else to turn to. I honestly don't think that any of them realize how much they impacted my life. Kevin, I admire you so much! I want to be just like you when I grow up and I want to teach my children to be that way too. You and Gerri are some of the most loving, accepting, generous people that I know and I am so sad that I haven't kept in contact. These posts toy with my emotions so much. It kills me to see one if my favorite dads going through this. A lot of it reminds me of my own father. It also gives me great joy to know that you are not giving up and are creating such lasting memories. I love you guys! More than you will ever know.

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    Replies
    1. Thanks for your kind loving words. Please tell us who you are privately. Sounds like we really loved you and still do. I have a feeling I know who you are but please don't torture me :o). Love, Gerrí

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  6. Queridos Hermanos, both of you are amazing, It is difficult to understand sometimes that the good people like you is going trough this trial but, I rally admire your positivism in your life, may the lord bless you hno. Taylor, your really are a great person and I will never forget all of the support you gave me when I was a Branch President and your were serving a mission in my Branch at Olimpic Parrk in Kearns Central Stake. I am following you.. I am praying for you...

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  7. Kevin and Gerri', loved visiting with you last night. What a wonderful love story and life you have shared with so many. We stand beside and behind you as you travel this new journey. Kent

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  8. Thanks for this journal, Kevin and Gerri... I admire you both so much.

    Psychedelics are purportedly very useful in examining the regions of human experience that you are exploring right now. DMT for instance. U may be republican/mormon/romney people, though, and recoil at the thought... but talk to your doc... people get a lot from these types of experiences... so, if you hadn't thought of doing psychedelics before... well, now may be a perfect time. I can't say it will be fun... but I guarantee it will give you insight into yourself and the human experience.

    I stand beside you and behind you as well. And as Jack Horkheimer used to say, "keep looking up".

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  9. Hello Kevin...
    My name is Rachmat, from Indonesia.
    i have watched your video on youtube. thanks for share about ALS.
    i wish you get more better..

    Lovely Greeting from Indonesia

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  10. Kevin and Gerri,

    You can't know how much my family and I appreciate your blog. One of our own has been diagnosed with bulbar-onset ALS, and we have all drawn so much comfort and positivity from your posts.

    Sending you much love and best wishes from Canada

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  11. Hello Kevin, I am sorry about your fight with ALS. I am a son of a person with ALS. I wanted to do something about ALS for him and for others like him. However, I need help, and I want to make sure that others like my father are interested in this project.
    Please visit ALSFight.com and feel free to provide feedback.
    Thank you.

    ReplyDelete
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    ReplyDelete

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