I am blessed to be able to use my leg again and am again able to drive. In the past month we have had a busy time. All our children have visited, as well as Mary's brother Leen and his wife Ineke from Holland. We could celebrate our birthdays in April, and also welcome a new grandchild on April 10, 2008, Katie, a daughter for Peter and Lauralee.
Peter will be ordained and installed as pastor of the OPC in Greenville, SC on DV. June 6, 2008. The Lord willing, we will drive down to Greenville to attend.
Saturday, May 24, 2008
Friday, February 29, 2008
Update April 8, 2008 , 2 months no walking
As you all may know ALS causes increasing weakness of all muscles, and an almost inevitable result will be that you sooner or later will fall. On February 27th I fell while transferring to my wheelchair. Up to then it had always gone well but this time my legs gave out. My right foot sort of twisted under me and bore the brunt of my weight I guess. It started to swell up. Mary insisted that we go to emergency at the hospital in case it was broken. To make a long story short, I indeed broke a bone, the fibula, just above the ankle. The doctor gave me an aircast, which is less heavy and uncomfortable than a plaster cast. It has to stay on for 9 weeks. For this period I am not supposed to put any weight on that leg. If I do the bone may shatter and I would be in serious trouble. We are allowed to take the cast off for dressing and washing, but preferably not for the first five days. Regularly we have to go back to the hospital for x-rays and to see a doctor. Needless to say, this makes things a lot more difficult. I cannot stand on one leg to transfer from chair to bed, etc. Standing on two legs was already becoming difficult, hence the fall.
We have received help from the occupational therapist. She has arranged to have a "Cricket lift" (a smaller version of a Hoyer lift) delivered. We will be getting other help to assist with transfers etc.
We are thankful to the Lord for the comfort and peace he provides every day. We trust Him for all our needs. The Lord is good in all He does.
Wednesday, February 6, 2008
Progress report 6 February 2008
Here is an update to let you all know how ALS is affecting me. ALS is a disease that will continue muscular degeneration. Also with me the effects are becoming more noticeable. Some changes since my last update are:
BREATHING:
I am using my bipap (Respironics Synchrony life support ventilator) full time now. I can go very short periods without breathing assistance, but barely long enough to have lunch. Increased use of the bipap has also increased pressure on my face, and it became necessary to purchase another face mask of a different design. I had been using a full face mask (something like the ones you see fighter pilots use) for sleeping, but it was wearing down the bridge of my nose and creating red wear marks on both of my cheeks.
My new nighttime mask is a new invention (produced by RESMED: a Mirage Liberty full face mask) and has a pillow admitting air under each nostril and a small cover for my mouth also admitting air. It is lightweight and does not rest on nose or cheeks, giving those a break so that they can heal. This mask leaves the upper face clear for the use of glasses for reading, which the other full face mask did not do.
For day time use I have a small mask with a prong bringing air to each nostril, allowing for speech, eating, drinking (using a straw) and reading.
I have also increased the pressure on the bipap machine to 6 E and 16 I (up from 5 and 14). The higher pressure inflates my lungs more, but does cause some nighttime problems. When sleeping, my face relaxes, and the high pressure lifts the mask off my face, causing noise and a loss of air.
MOBILITY:
My walker is getting less use, since my legs are having difficulty in supporting me, and this is of course aggravated by a lack of air when pushing my walker. So I have started making more use of my Jazzy 1113 power wheelchair, so that at least I would not need to walk, decreasing the need for additional air. Also, even when using my power chair, the lack of air is becoming more evident, and it was obvious that use of the bipap was needed on the power chair if I was to continue to use it.
I had asked the company that maintains and sells these chairs locally, if it was possible to mount the bipap machine on the chair, and run it on the chair's battery, but they said it could not be done. Research on the internet showed that it had been done. See:
http://mikebougher.com/12vdc_power_for_bipap_or_ventil.htm
The Jazzy 1113 power chair runs on 24 volts (two 12 volt batteries) and I asked a technical brother in my church advice if we could mount the 12 volt bipap on one of these. We decided to try it, and he built a very nice holder on the back of the chair to rest the bipap on, with a cigarette lighter plug wired to one of the two batteries, just under the bipap machine holder. (Thank You Brad!)
This worked fine, until we found out that when recharging the chair, the charging stopped when the least used battery was full. It is obvious that we will exhaust one battery in due time, and that the chair will not recharge because the other battery is still full.
As interim solution we have mounted a separate 12 volt battery for the bipap machine on the new holder on the back of the power chair, and put the bipap machine in the shopping net, and presto!
We have full portability: both mobility and a constant air supply.
Going shopping, of course one has to be impervious to the glances of those who think I have just arrived from outer space, but that is a small price to pay.
The next step to perfect this setup is to mount a 24 to 12 volt converter between both batteries and the new plug for the bipap. This will drain both batteries equally and resolve recharging issues.
This will remove the temporary extra battery from the bipap holder, and the bipap machine can then be placed in its holder, and the shopping net will be empty, cleaning up the present cluttered appearance.
FINE MOTOR SKILLS
The use of my hands is regressing. I can no longer write. Also the use of the computer keyboard gets very tiring after a while, and a lot of surplus letters start appearing on the screen.
As I am getting physically weaker, the Lord strengthens me with His comfort and presence. He gives me peace and contentment. I rejoice in His blessings every day. I depend on Him for every need, and He has greatly blessed me. His greatest blessing is the work of His Son, who has died for my sins.
BREATHING:
I am using my bipap (Respironics Synchrony life support ventilator) full time now. I can go very short periods without breathing assistance, but barely long enough to have lunch. Increased use of the bipap has also increased pressure on my face, and it became necessary to purchase another face mask of a different design. I had been using a full face mask (something like the ones you see fighter pilots use) for sleeping, but it was wearing down the bridge of my nose and creating red wear marks on both of my cheeks.
My new nighttime mask is a new invention (produced by RESMED: a Mirage Liberty full face mask) and has a pillow admitting air under each nostril and a small cover for my mouth also admitting air. It is lightweight and does not rest on nose or cheeks, giving those a break so that they can heal. This mask leaves the upper face clear for the use of glasses for reading, which the other full face mask did not do.
For day time use I have a small mask with a prong bringing air to each nostril, allowing for speech, eating, drinking (using a straw) and reading.
I have also increased the pressure on the bipap machine to 6 E and 16 I (up from 5 and 14). The higher pressure inflates my lungs more, but does cause some nighttime problems. When sleeping, my face relaxes, and the high pressure lifts the mask off my face, causing noise and a loss of air.
MOBILITY:
My walker is getting less use, since my legs are having difficulty in supporting me, and this is of course aggravated by a lack of air when pushing my walker. So I have started making more use of my Jazzy 1113 power wheelchair, so that at least I would not need to walk, decreasing the need for additional air. Also, even when using my power chair, the lack of air is becoming more evident, and it was obvious that use of the bipap was needed on the power chair if I was to continue to use it.
I had asked the company that maintains and sells these chairs locally, if it was possible to mount the bipap machine on the chair, and run it on the chair's battery, but they said it could not be done. Research on the internet showed that it had been done. See:
http://mikebougher.com/12vdc_power_for_bipap_or_ventil.htm
The Jazzy 1113 power chair runs on 24 volts (two 12 volt batteries) and I asked a technical brother in my church advice if we could mount the 12 volt bipap on one of these. We decided to try it, and he built a very nice holder on the back of the chair to rest the bipap on, with a cigarette lighter plug wired to one of the two batteries, just under the bipap machine holder. (Thank You Brad!)
This worked fine, until we found out that when recharging the chair, the charging stopped when the least used battery was full. It is obvious that we will exhaust one battery in due time, and that the chair will not recharge because the other battery is still full.
As interim solution we have mounted a separate 12 volt battery for the bipap machine on the new holder on the back of the power chair, and put the bipap machine in the shopping net, and presto!
We have full portability: both mobility and a constant air supply.
Going shopping, of course one has to be impervious to the glances of those who think I have just arrived from outer space, but that is a small price to pay.
The next step to perfect this setup is to mount a 24 to 12 volt converter between both batteries and the new plug for the bipap. This will drain both batteries equally and resolve recharging issues.
This will remove the temporary extra battery from the bipap holder, and the bipap machine can then be placed in its holder, and the shopping net will be empty, cleaning up the present cluttered appearance.
FINE MOTOR SKILLS
The use of my hands is regressing. I can no longer write. Also the use of the computer keyboard gets very tiring after a while, and a lot of surplus letters start appearing on the screen.
As I am getting physically weaker, the Lord strengthens me with His comfort and presence. He gives me peace and contentment. I rejoice in His blessings every day. I depend on Him for every need, and He has greatly blessed me. His greatest blessing is the work of His Son, who has died for my sins.
Not what my hands have done
Can save my guilty soul;
Not what my toiling flesh has borne
Can make my spirit whole
Not what I feel or do
Can give me peace with God
Not all my prayers and sighs and tears
Can bear my awful load
Thy grace alone, O God
To me can pardon speak;
Thy power alone, O Son of God,
Can this sore bondage break.
No other work save Thine,
No other blood will do;
No strength save that which is divine
Can bear me safely through.
Horatius Bonar
Can save my guilty soul;
Not what my toiling flesh has borne
Can make my spirit whole
Not what I feel or do
Can give me peace with God
Not all my prayers and sighs and tears
Can bear my awful load
Thy grace alone, O God
To me can pardon speak;
Thy power alone, O Son of God,
Can this sore bondage break.
No other work save Thine,
No other blood will do;
No strength save that which is divine
Can bear me safely through.
Horatius Bonar
Monday, December 31, 2007
Christmas 2007
The Christmas season is a wonderful season, when we rejoice remembering our saviour’s birth. It is also a season of family gatherings. We were privileged that even all our children living far away (Bill & Rebecca, Indiana, Peter & Lauralee, South Carolina, Nick & Anita, Virginia) were able to travel home, so that we could celebrate with our family complete.
Wednesday, December 5, 2007
Family Pictures
This is a picture from Nick and Anita's wedding. Shown are all our children with their spouses and our grandchildren and also Scott, Jen's boyfriend.To see more wedding pictures click here
The second family picture was taken in July 2006, before Nick and Anita were married.
Monday, December 3, 2007
A Grand Holiday "Down South"
As soon as we received confirmation of the sale of our previous home, we decided to visit our children in Virginia, South Carolina and Indiana. I am still able to drive myself, and the weather was still very warm, actually unseasonably warm: 30 c for the middle of October! We took along my power wheel chair, a manual ramp (which is quite heavy) and my walker and two bipap machines and two batteries. Mary had to load the van with all this equipment, (and more), but as soon as the wheels started rolling, she could take a break and rest. We left on Tuesday October 9th, stayed overnight in Pennsylvania, and visited the historic town of Fredericksburg on Thursday.
We arrived on Thursday at Nick and Anita’s place in Suffolk, Virginia. We took three days to travel there, so that we would not be rushed. We traveled over Buffalo to Pennsylvania and that area was quite nice with fall colours. The last leg to Virginia was mostly busy highway driving with lots of traffic congestion, stop and go traffic, particularly around Washington D.C. We got there as rush hour started, and it took us quite a few hours to just get past Washington. We finally got to Nick and Anita’s, a little later than we had planned. We were very happy to see each other. Nick And Anita were married last July and we had not seen them since their wedding day. We could, for the first time, see their beautiful home. As plans are now, Nick and Anita will likely be moving this coming summer, so that he can commence studies for his Ph.D.
We arrived on Thursday at Nick and Anita’s place in Suffolk, Virginia. We took three days to travel there, so that we would not be rushed. We traveled over Buffalo to Pennsylvania and that area was quite nice with fall colours. The last leg to Virginia was mostly busy highway driving with lots of traffic congestion, stop and go traffic, particularly around Washington D.C. We got there as rush hour started, and it took us quite a few hours to just get past Washington. We finally got to Nick and Anita’s, a little later than we had planned. We were very happy to see each other. Nick And Anita were married last July and we had not seen them since their wedding day. We could, for the first time, see their beautiful home. As plans are now, Nick and Anita will likely be moving this coming summer, so that he can commence studies for his Ph.D.
With Anita we visited the Botanical Gardens in Norfolk. The roses were in their prime and beautiful.
On Saturday we went to Virginia beach. We walked up and down the boulevard and due to the warm weather everyone was starting to become very hot, with the exception of myself, since I was using my power chair. Mary, of course, had to touch the water of the Atlantic ocean.
We very much enjoyed going with Nick and Anita to their church on Sunday.
We had a fantastic time staying with them!
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