Operating in the Chippewa Valley since 1992.

  Living with ALS on a daily basis can be an overwhelming task.  Depending on where a person is in the disease process, one might be dealing with:

1.   Decreased mobility                            7.  Changes in thinking and behavior
2.   Swallowing difficulties                        8.  Speech and communication
3.   Muscle spasms or pain                      9.  Financial concerns
4.   Emotional control                              10.  End of life issues
5.   Eating/nutrition                                  11.  Spirit concerns
6.   Breathing and lung issues

Local physicians, nurses, therapists and social workers may have limited experience with ALS, which often means ALS patients and their families must be their own best advocate.  Many have found that it helps to ask questions and talk to others who have been where you are now.  Join us the 2nd Thursday of each month for the Support Group.  1 p.m at Chippewa Valley Bible Church, in Chippewa Falls, WI.

Our newsletter today will highlight one of our own members story along with some resources related to bed mobility. 
 Billy Briggs was diagnosed with ALS in 1984. The doctor's told him to go home and get his affairs in order because he probably wouldn't live another 2 years.  Little did Bill know that Michelle would need that advice before he did. In January 2017, Michelle lost her own 2 year fight with breast cancer, leaving Bill with another hurdle to overcome. Bill reminds us that when getting your affairs in order, be sure that both spouses do so - none of us knows how much time we have left.

Billy and Michelle, started attending the NW WI ALS Support group in the mid 1990's, almost 10 years after his initial diagnosis. The slow progression of Bill's disease is very rare and unexplainable from a medical perspective. but it allowed Bill and Michelle to live an active, full life for which they were forever grateful.

The Inter-County Leader Northern Currents Newspaper interviewed Billy in May of this year and they have allowed us to share that story here:

Bed Mobility - A Frequent Obstacle for PALS
 Getting into/out of bed, sliding up or down, and turning over when your legs and arms start to get weak can be challenging for those with ALS.  

Today we will highlight some idea's others have found helpful in dealing with bed mobility issues.  Links are provided to give you additional information. Training in use of equipment should be sought from your physical therapist.  

Insurance may help to cover the cost of some equipment.  If you must pay privately, many have found used equipment on e-bay or craigslist, but again, be sure you have adequate training in the use of any equipment you purchase. Also check with your local support group to see if the Lending Library has equipment you can borrow or try out before purchasing anything.

 Grab bars can be installed on most any bed and come in a variety of heights and lengths and work well when the PAL still has a good grip and arm strength
Transfer Boards can be used to slide a person who can't stand in/out of wheelchair.  The one pictured above has a rotating disk that slides along the length of the board is called a Beasy Board.
Transfer belt can provide caregiver a safe way to hold onto the PAL when assisting with mobility.
Blanket caddy can help to raise the covers off of weak legs, making it easier to move.  Some have made a caddy out of a sturdy cardboard box, cutting out one side so the feet aren't resting on the cardboard.
A Mobility Lift can be hydraulic, powered, mobile or overhead.  The floor models work the best if the carpeting is removed.  Be sure to talk to your medical staff as to the best type of lift for you now and down the road, as they can be expensive.
A Transfer sheet can be as simple as a top sheet, folded in half and placed under the PAL to give caregiver something to hold onto, to a specific sheet with handles and a bottom side that is slippery.
Thoughts from Sally
I don't think I've ever heard a good explanation as to why time seems to fly by so quickly as we get older.  

But this I do know... we still have the same number of minutes in an hour and hours in a day as we did when I was 5.  So I have to remind myself to make the most of each one of those minutes and hours.

Let's all try to l ook for the good, smile, laugh, and enjoy each and every moment that we can, because one thing is sure -we won't have a chance to do it over. 


Sally Sweet  
NW WI ALS Support Group