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!

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.

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!!

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!

Virginia

This past weekend we were in Virginia with our friends Aaron and Becky Stoltzfus. It rained most of the time but we had fun anyway playing games and hanging out on the farm. It does me good to get away from the daily routine of home.

There's not much new happening right now other than I am so ready for spring and warmer weather so I can get outside during the day. All in all I can say God is good.

I posted some pictures of Aaron's barn and his miniture horses that he is so proud of.

In Like a Lion

Well here it is March already and the snow is coming down hard and fast. Tonight the temperature will be a balmy 11 degrees. Brrr!
Today is my wife's birthday! I wish her the best and pray her day will be special for her. I am so blessed to have her for my wife and mother to my two awesome sons.
As I am sitting here watching the snow come down and covering the ground with a white blanket of snow, I can't help but think about the blood of Jesus that was shed to wash away our sins and make us white as snow. No matter what storms in life come our way, we can trust God to give us the grace and courage to whether the storm.
Living with ALS sometimes feels like I'm in a rowboat in the middle of a lake with no paddles and a huge storm looming on the horizon. But then I sense the presense of God and the peace I feel brings me comfort knowing he will be there for me through this particular storm.
I'm hoping March goes out like a lamb!!

Another Wedding

February 21st we had another wedding to attend. This time it was my nephew Conrad who was married to Vicky. It's just another reminder that i"m getting old with my son and nephews getting married. I pray that they will have a long and happy marriage. Sunday my father-in-law had his 80th birthday so we as a family celebrated his special day with him. Later we had some of their close friends drop in to surprise him. It was a busy week-end but it was fun. Here are some pictures of this week-ends events.

Wedding

Febuary 7th was a big day for all of us. Clint and Tanya got married at Pequea Baptist Church and the reception was at the Shady Maple Banquet Hall. It was quite an exciting day for everyone. They had a live band at the reception and it was a high energy atmosphere filled with fun and dancing. Although I am extremely happy for both of them as they start their life together, I have mixed feelings not having Clint here at home with us but I know they will be happy together and I have inherited a daughter that I love very much. She will be a wonderful addition to our family. Here are some pictures of the wedding. Enjoy!

Febuary 2009

This week was filled with a whole range of emotions for me. As my progression keeps robbing me of my physical capabilities the process of getting adaptive equipment to make life easier can seem overwhelming at times. I struggle with the thought of becoming more and more reliant on others to help me with activities of daily living. But with God's help I am learning to accept the reality of it all. I am signed up with United Disability Services that will provide an aid to assist me with range of motion exercises, meal preparation and whatever I need help with while they are here.
Clint is getting married this Saturday and I am very excited for him and wish him and Tanya many happy years together. But this means he will no longer be here with us and I will miss his presence here in our home even though he's not here that much right now with the wedding coming up. He has been working at the home he bought in Ephrata just about every night this month.

My Mom who was very sick over the holidays and nearly died is doing so much better. She is doing very well and is in good spirits. It is nothing short of amazing the way she rebounded.

Please pray for Emy and I as we continue to face new challenges in our lives. Knowing that we have your support and prayers makes life much easier for us. We thank God for each one of you all and pray God's blessing on your lives.

ALS Clinic Visit

Wednesday January 14th I had my clinic visit at Hershey Medical Center. Everything was pretty much as expected with my legs and arms. I can still bear weight for a short period but I'm not able to walk. My arms and hands are much weaker than last visit but still functional. My speech is somewhat slower and sometimes have difficulty pronouncing words. The most exciting thing is my breathing function is still very good. My FVC is at 94% which is very good. The range of motion exercises I'm doing is keeping my legs more flexible and not as spastic.
Some recommendations from the clinic included a better mattress to reduce pressure sores, range of motion on a daily basis, and maybe a lift to aid with transfers.
When we where leaving I met a fellow PAL (people with als) that I've communicated with through the web site Patients Like Me. It was nice to chatting with him.

January 13/2009

Time sure flies, here we are, halfway through January already. January 10th my nephew Ryan Dagen got married to Janae Harnish. If you're like me you probably wonder why anyone would want to get married in January. I guess weather isn't a factor when you are in love. The weather was questionable but the snow held off. It was a fun wedding. My son Clint is getting married Febuary 7th to Tanya Smucker. It will be a fun time but I'm going to miss him here at home. they will be living in Epharata where Clint bought a house. He is working at the house after work painting, tearing out walls, putting up support beams, getting it ready to move into. I wish I could help him with it but unfortunately all I can do is provide moral support and advice. He seems to be doing a good job with it though.

A New Year

2009 is here and we face a new year with many challenges. Anything from economic problems worldwide, wars, new president, unemployment, and personal challenges. How will we cope? Will we put our trust and faith in God or will we live in fear of the uncertainty of what we cannot control?
For me, having ALS, I have learned not to look too far ahead and focus more on the present. One day at a time is my motto.
The Saturday before Christmas our family had our Christmas dinner. We had a good time together. Then Monday morning my Mom was rushed to the hospital with intestinal bleeding. She nearly died several times due to blood loss. She was moved to Hospice and has recovered somewhat and this morning she is being transferred to my sisters house where hospice will continue care for her. It is yet another reminder that we are not here forever but at some point in our lives we will be called home. We as a family spent alot of time together at the hospice center bonding with each other. The last several weeks have been a blurr.
I don't know what 2009 has in store for me but I know God does and that is all that matters to me right now. Hope and pray this year will be a blessed one for all!

Merry Christmas!

Merry Christmas to all! I pray that your day will be blessed and most importantly, lets not forget what this day is all about. Thank you Lord for sending your son for our redemption.

Philadelphia ALS Chapter Holiday Party

December 7th, we went to King of Prussia to the annual holiday party courtesy of the Philadelphia ALS chapter. We invited Buck and Verna to go with us along with Chad, Clint, and Tanya. We had a buffet style meal and afterwards they had entertainment provided by Hot Hot Entertainment. Although we didn't stay to the end, we were there long enough to be greeted by the Phillies mascot, you know, that big ugly green whatever it's supposed be. Here are some pictures from the event. As you can see, the Phanatic got a little friendly with me. LOL!