My Journey with A.L.S. (Bulbar)

by Audrey Head

 Audrey Head

 

This started in March of 2004; I woke up with a kind of a frog in my throat and my voice didn't sound right. My daughter thought it was an allergy to the latest medications I was taking.  So I quit them but I didn't get better. Then I had difficulty swallowing water and only half of it went down and the rest just came back out.  My doctor said it was a stroke so he sent me for a CT scan. Nothing showed up, no stroke.  Then they tested my thyroid but no problems there.  Next came an M.R.I., nothing there either. Next came sensory studies, nerve studies and an E.M.G. in Saskatoon. This was done on November 18, 2004.  Finally a diagnosis with no doubt about it. I had A.L.S. and it was getting worse. 

I had trouble eating certain foods like bread, salads, water and my speech was getting hard to understand.  My saliva was a big problem; Kleenex didn't help much so I switched to paper towels.  I have twitches in my arms and legs. Muscle cramps in my legs wake me up every day at 5 a.m.  I saw Dr. Hader for the first time in January of 2005, he suggested Trans Derm patches to help control my saliva.  It helped… at least my nose didn't run… but it made my saliva so thick it felt like I was chewing cotton batting, so one more thing to live with.  Dr. Hagar ordered Rilutek, an experimental drug. I take two a day 12 hours apart on an empty stomach.  I've been on it now for 5 1/2 months and it is supposed to lower the glutamate in patients with A.L.S.  I really don't see any sign of it working.  I can’t talk at all anymore as my throat doesn't work at all.  I have an eye infection because they are too dry. My skin is dry as there are not enough fluids in my system, so I am booked at a hospital in August to get a feeding tube put in my stomach to add water and juice that way. 

I'm still walking but not that good, and I have trouble picking things up with my hands.  Saliva is worse so am using 1½ patches behind my ear.  I'm still doing things that need doing like laundry and cooking.  I don't go shopping because I can't talk.  I don't use the telephone because people can’t understand me and just hang up on me.  So my daughter got me a typing phone so at least I can phone her and she can phone others for me.  I get tired in the afternoons and have to rest.  I sleep well but wonder what I will be losing next, my hands or feet? 

The support group is good for me but it is in Regina two hours away.  When I do go out I use a pen and notebook to communicate… at least I can still write.  I have no pain and have good friends who visit me… and a husband that shops for me and answers the phone and does the vacuuming.  I still drive my car so if I want to see my friends I have to visit them with my notebook and pen and that's working for now.

NOTE: Addition

The Final year in the Life of Audrey Head By Walle Head-March /2006

In November 2004 at the Saskatoon City Hospital (in Saskatchewan, Canada) Specialist Dr. Hader suspected that Audrey had A.L.S.

This was confirmed at subsequent visits. This Lou Gehrig's disease - A.L.S condition slowly destroys the brain messages to the involuntary muscles, such as swallowing, speech, and finally the chest muscles used to breathe. As predicted, early in 2005 she began to have difficulty swallowing food and by August 2005 a feeding tube was installed in her stomach so that she fed herself by holding a funnel to the tube and pouring liquid "Boost" or "Ensure" food supplements as well as water and juice directly into her stomach.

About mid June 2005, her ability to speak failed entirely.

She had to write notes on paper or a small marker board in order to communicate. Also SaskTel supplied a "teletalker" unit so that she was able to type messages back and forth to our daughter, Donna.

We purchased a large wheeled walker at that time as well, which she used till one week before she died. She had an oxygen machine to help her sleep. Portable oxygen for the times when she left the house.

The ALS Society also loaned a suction machine to help expirate the volume of saliva that Audrey was producing.

A talking computer was supplied by Sask-Abilities. as well as a
wheelchair, (which she never used) a bath stool , and a bathroom "pole".

Walle would take her out of the home about once a week for "hourly’visits with retired home care workers and friends until winter came.

Audrey was fortunate to have daily visitors and well as a visit from the health nurse every two weeks. As she was capable of doing all her own personal care: Bathing , feeding, dressing, etc; No home care aides were needed. Audrey was subjected to occasional "falls" .

The ambulance was called about 4 times to help her up.

Other times the visiting people would help her to her feet.

February 6, 2006 she was ambulanced to the Hospital at Yorkton with a case of pneumonia. Her specialist informed us that ALS patients (at the stage Audrey was at) have only a 5% chance of survival with this.

She died in the hospital Sunday 5.30 a.m. on February 19, 2006.

Audrey had her funeral arrangements made in May/2005 and wrote her own obituary as well. She also had her financial affairs in order at that time. Her Funeral Prayers were held at St. Mary’s Church ,Yorkton Feb/22/06, with 350 people in attendance. On Feb/23/06, the Funeral Mass held at St Mary’s Church was attended by 275 people.

The internment took place at the Yorkton City Cemetery at 11:45 a.m. Following the internment, A meal of cold cuts and soup were served at St. Mary’s Cultural Center. The Family thanked everyone for their respect and well wishes during Audreys illness as well as they sympathy and support during the funeral week. May she rest in Peace.
 

A (long) note added by Audrey's daughter, Brenda Gelowitz:

Mom was a devout Christian and she was a past president of her church's lady's club: The Ukrainian Catholic Women's League of Canada, and prior to her illness would often lead "The Praying of the Rosary" in church. After mom got sick, many of her friends, former co-workers from Home Care (she was a Home Care Aide prior to her retirement in 2003) and U.C.W.L.C. members sent her cards and visited her and would tell her that they were praying for her health so that she could overcome this terrible illness. I did a lot of research, and attended an A.L.S. support group in Regina, and determined very early on, that the type of A.L.S. mom had (Bulbar -- the kind that attacks the throat first), that it was unlikely she would overcome this, or that she would live more than the 18 to 24 months the doctor gave her when they first diagnosed the disease. Every member of our immediate family knew about this. We hoped for the best, but knew that the worst was imminent. Mom started having symptoms around Easter of 2004, and died February of 2006, so the time frame we were given, turned out to be very accurate. I think that all of the prayers, and her strong beliefs allowed her to have the quality of life she did in her final year. She basically did everything she would have otherwise done, right up to January 2005 and then started to lose ability and strength for the next year. And even over the next year, she did almost everything for herself in the comfort of her own home: she even did laundry and made her bed. One of the things that many of the ladies in my support group told me, was that their late husbands (all of whom had Bulbar A.L.S.), was that in the final days of their lives, they could not hold their heads up, as their neck muscles were too weak. I think the fact that Mom did have so many friends praying for her, helped her avoid this final blow, and that she was able to pass away before the A.L.S. made things "really" difficult for her and for my Dad. Also, although she had hoped to be able to die at home, the fact that she was in the hospital, made far more people comfortable to come and visit her in her final days. Somehow, if a person isn't in the hospital, people don't believe you when you say that "this could be it". Although she was very weak, and spent most of her last 2 weeks sitting up in a hospital lounge chair, she was still very "visitable". She wore her own pajamas, and was able to write on her white board and "talk" with her visitors. This gave every person who made the effort to come and see her a chance to see her and talk to her one last time. The ability to see your loved one, and say good-bye near the end of their life is a gift that could only come from God.

So, the next time I hear that someone has Bulbar A.L.S., rather than just saying "Oh my, isn't that awful for them and their family (which it is), I can add "They are lucky to know that the end may be near, and that it is time to say what you've always wanted to say to your loved one, and to be good and kind to them, so that you can live YOUR life without regret". Not many people get that opportunity.

 

Audrey lost her battle to ALS in February, 2006


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