Thursday, April 30, 2009

ALS Clinic Visit

April 22nd I had a clinic visit where I see multiple specialists to evaluate my condition. I see a pastoral counselor, clinic nurse, MDA rep, nurse counselor, ALS neurologist, social worker, OT and PT, respiratory therapist, and a speech therapist. It ends up taking about 4 hours till everyone sees me.
Here are some of the recommendations that they made.
  • Add more hours for attendant care as needed. Right now I am receiving 17 hrs/wk.
  • Think about attending the support group which I'm not doing at this time. I have thought about going but I keep putting it off due to some reservations I have about going even though it would probably be beneficial to attend. Maybe this month I'll try to make it.
  • Because of increased coughing while eating and drinking, I should stick to a soft diet and take small sips and bites. Decrease distractions when I'm eating or drinking and avoid mixed consistencies of food. As the muscles used to swallow and speak weaken, the risk of aspiration increases.
  • The OT gave me braces to wear on my wrists to support them due to increased weakness and foam handles to put on eating utensils making them easier to hold.
  • My respiratory was down considerably but I think it was because I couldn't form a tight seal with my lips. I don't feel like my breathing has changed all that much so I'm not too worried about it.

My doctor said I'm progressing rather slowly which is a good thing and something to be grateful for. I thank God every day for the time I have and for my wonderful family that support me and love me. I have been blessed with a lovely wife and two wonderful sons and daughter-in-laws. I'm blessed!

Thursday, April 23, 2009

Chad and Noelle

I am happy to annouce that Chad and Noelle are engaged to be married. An October wedding is planned and I am so excited for them both. Noelle will be a wonderful addtion to our family. I feel like our family is now complete. I love my new daughters and I'm happy for Chad and Clint. I am incredibly blessed to have such a lovely family.

Thursday, April 16, 2009

Easter Sunday

Easter was spent with family and we had agreat time together. After dinner we had an Easter basket hunt, something we did for the boys since they were little. Now we included Tanya and Noelle in the hunt for their baskets. It was a fun time. here are some pictures. Enjoy!!

Monday, April 6, 2009

Family Retreat

This week-end we spent time with family at a retreat north of Reinholds, Pa. We had so much fun fellow shipping with one another, watching the little ones play, and eating. It made me realize once again how important family is and bond we share with one another. I pray that we can pass on the legacy of how important family is to our children as they grow up and have families of their own. I rely on my families more than ever now that I have ALS. There are so many things we take for granted. Not that we intentually take things for granted, I just think that's how our human nature is. Every now and then God allows things to happen in our live to remind us of everything he has blessed us with. Even now as I deal with ALS, I see where I have been incredibly blessed. I would like to say thanks to all of my family Moms and Dads, my wife, sons, daughter-in-law, nieces, nephews, aunts, uncles, brothers, sisters, and in-laws for their support and prayers on my behalf. Family certainly is one thing I hope I'll never take for granted. I love you all!