Letter for Guy

(with apologies to Elton John’s Song for Guy!)

08/09/10 (it’s once in a lifetime that you can date something like that!): 4 years on  …

This is a letter that I received from Carol in the USA via yahoogroups.com – a support group for those of us diagnosed with CBD.

I cannot add to such a beautifully stated message – it tells our story:

Ten years ago when my husband Guy was 64 years old, he first showed symptoms of CBD; however, he was not officially diagnosed until 2004.


A year and a half ago, Guy reached the point where he could no longer stand nor use
his arms and hands. Thankfully he can still talk and chew and swallow. Other than that, he has to totally depend upon assistance for all his needs.

We are continuously accommodating Guy’s needs or modifying our routines to adjust to any new developments in the progression of the CBD. We use a Hoyer lift to get Guy out of bed and into his wheelchair. We have an alternating pressure mattress to help prevent pressure sores. We purchased a used van with a wheelchair lift.


We also have Guy enrolled in Hospice as a palliative care patient. As a result of that enrollment, a Hospice aide comes 4 times a week to help Guy’s aide bathe Guy since that is a major task. In addition, a Hospice nurse comes once a week to take Guy’s vitals and checks his body for bed sores.


A massage therapist comes every few weeks as well as a podiatrist every couple of months.


That’s the difficult part of Guy’s life.


Now the good part is that he still maintains his incredible sense of humor, still enjoys following his adored Yankees, still enjoys having friends and family visit; and, although he flops over in his wheelchair and needs to be helped to return to an erect sitting position, he enjoys leaving the house as much as possible.


We are blessed to have the help of a fabulous male CNA, Wilbert, who works with us 7 days a week for 9 hours a day.

(Something told me 12 years ago to buy long term health insurance. I shudder
to think about what our lives would be like now had we not purchased that insurance.)


With Wilbert’s help, we manage to do things like go to the movies, concerts, theater, out to dinner, take rides and anything else we can accomplish in 3 hours or less. Again we are so very fortunate to have Wilbert’s help.


But the area in which I feel especially grateful is that of Guy’s attitude.


Never once in all the time his life has been so drastically altered by this disease has he complained. His attitude and disposition are nothing short of extraordinary. It is much more likely that I rather than Guy would have a “melt down”!


He even has the remarkable ability to see humor in his situation. Many times we have had belly laughs over the strange movements that occur in his limbs.


I readily admit that had it been I confined to that hospital bed, there would be no way my attitude and disposition would in any way measure up to Guy’s.


I would like to think, however,  that having experienced this time with Guy during his illness, I have  learned the incredible effect that frame of mind can have on the quality of  one’s life regardless of the measure of one’s physical state.


 He has been able to take what would ordinarily be a daily world of misery and despair and created a workable, pleasant and sometimes actually silly life for both of us. I will forever be grateful to him for not being the bear I probably would have been had I been the one afflicted with such a debilitating illness.


I am sharing this with you because I can hear in your posting the same strength I observe in Guy. You sound like a person of courage and conviction.


Yes, the CBD may weaken your body, but my prayer for you is that you never allow it to damage your spirit.


May you continue to remain strong in will, able to maintain inner peace and find something to smile about every day.
 Sending you positive thoughts and prayers,