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Things are getting harder

Things are getting harder for me to do. What things you ask? Just everything. Getting dressed is a real workout for me. I'm tired and have to rest after. Eating is becoming more difficult too. I am grateful that my progression has remained very slow compared to most PaLS. I feel that affords me more tine to Advocate and help others. I fell in January and broke my knuckle which has seriously hurt my ability to make a fist with my good hand.

Think

Eccl. 11:3 3 If the clouds are full of rain, they empty themselves upon the earth; and if a tree falls toward the south or toward the north, in the place where the tree falls, there it will lie.

Power Chair Part 2

Well, it took 87 days, but I am the proud owner of a Volcano Red M300. Added bling to it and it is looking fine. Best thing of all, the DME company took the insurance as full payment. So NO copay. That money we saved is going towards the van. Permobil expedited the order because I was facing a reset of my deductible and wanted it done before then.

Background 2

My PALS continued go to work after his diagnosis, working more and more from home. He would use the walker indoors and use his PWC outdoors. Even after he could not really walk much, he would take at least a few steps, or rather shuffles, holding the walker until about the beginning of 2014. We got a Hoyer type patient lift in August 2012. We started using it regulary sometime in the Fall of 2012 for transfers.

Background

I will write a little bit more about our ALS journey for the sake of completeness. My PALS is 59 years old. He was diagnosed with ALS when he was 54 years old. Looking back, the first symptom appeared about 2 years before that when he developed a foot drop on his right foot. Before that he was an active normal guy. At the time of his diagnosis in Nov 2009, the neuro said my PALS would live for about another 33 - 44 months. Right after the diagnosis, the neuro sent him for a sleep study. He got a Bipap in January 2010, and started using it whenever he slept.

Respiratory rate is getting faster

I am writing this more as a way of recording what is going on with my PALS than a personal blog. My PALS's breathing has been at about 24 - 26 at rest for the past year or so. I could tell that from the Trilogy readings, and the weekly Hospice nurse's measurements confirm that. When the nurse checked it yesterday, it was at 30. He looks really tired these days, and struggles to spell out the words he is trying to speak. He still gets out of bed every morning, and takes his usual 90 minute nap in the afternoon.

My biggest secret!

My dad as you all know has ALS. He will turn 80 on Sept 11th. It was two years ago in May since his diagnosis. Here is my secret shame. Around the first of the year in January of 2012 my dad still was able to live in the same home town as me in central Illinois. I was having a very hard time dealing with the fact that my dad has ALS. I was even breaking down in tears at work. Luckily, only one time did someone notice and it was a few co-workers and not some outsiders. They were very understanding when I told them what was upsetting me.

DIHALS response

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ... Here are some first considerations that may help: #1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.

Whoever said life is fair - I hate that saying !!

Just got back from my sis's . She has gotten back her test results . She was found to be a carrier of the FIG4 gene ! Her docotor says that gene alone will not cause ALS , So that was the best news that I have had in a long time !! Got back and the love of my life has asked me to marry him - wow , I love him sooo much !! A couple days after that we were told that my fiance might very well have parkinsons disease !! He goes to a neuroligist soon to verify it . Our lifes - oh God . Things have changed drasticly already , he is not doing well at all . Will post again when we find out for sure .

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