In December of 1991 Mom began having difficulty writing, she couldn’t explain it but she just didn’t seem to be able to write well. She then started to develop a tremor in her right hand. and her speech started to slur.

She was first diagnosed at the Mayo Clinic, in Rochester, MN. In July 1994.

Increased tremor which has also now shown up in the left hand, inability to control speech, body movements, alien limb, occasional double vision (seemed to go along with some of the medication). Mom can think of something she wants to say but then it doesn’t come out of her mouth. She can’t recall numbers, letters, dates, etc. She knows them in her head but can’t speak them. She often says yes for no and vise versa. She is unable to write. – She has great difficulty feeding herself due to tremors and lack of motor control in the limbs. She shuffles when she walks and tends to bump into things on her right. She has had numerous falls. She has had some difficulty with swallowing but that seems a bit better. She also has frequent loss of bladder and bowel control. She can no longer dress or bathe herself. I stitched the buttons on her blouses with elastic thread so they would be buttoned but she could slip them on and off. We sewed Velcro to some of her buttons, and bought all pants with elastic waste as she can’t work zippers, buttons, etc. We also bought elastic shoe laces. She wears supportive tennis shoes and with the elastic, they don’t have to be tied.

Mom has a wonderful physical therapist. Medicare refused to cover the therapy any more because there was no improvement. We strongly feel the physical therapy helped— Her therapist continued to treat Mom weekly on her own time. In addition she does speech therapy and occupational therapy.

Equipment:
We have a LaBoudet for the bathroom, Mom has great difficulty wiping and this helps. She has a swivel spoon to feed herself, a (motorized) recliner chair with a button to raise the chair to get in or out, a medical alert button (which works GREAT). The occupational therapist made a special splint for her right hand to help the rigidity of the hand and the thumb.

Medications:
Neurontin- at first Mom felt it really helped the speech however, her speech is increasingly more difficult to understand.
Proponal- this seemed to help the tremor.
Zoloft- she says it helps her focus.

Mom is remarkable in her attitude, she laughs a lot. She looks at this disease as a challenge. I think her positive attitude has made a big difference in how fast –the disease — has progressed to this point. She is truly an inspiration. Our family is very close. Our father passed away from Melanoma and we know how cherished life is. We all pull together to make things work and we have a strong faith in God to help us through every obstacle. – As a caregiver, it is hard for me to follow my own advise, but if you can get help, take it. It is so easy to get so overwhelmed.

Caregiving, Medicare and Hospice:
Medicare wouldn’t cover physical therapy any longer and we thought it was very beneficial. They also didn’t cover her medications which would cost around $400-$500 per month. As a caregiver, wife and mother of two young children it became very difficult for me to do all the day to day care for mom, work full time and care for my own family. Medicare refused coverage for home health because they said she didn’t need a nurse, it was primarily personal she needed. I tried to contact a home health aide on my own and they wanted $50 per hour for 1-2 hours a morning. I finally hired an outside provider, but had to get liability insurance and pay unemployment taxes, as well as, withhold taxes for federal and state. It became a bookkeeping burden and very overwhelming.

Mom has now qualified for Hospice through our local hospital. They help a couple of hours each morning and then I take care of her at night and weekends. Hospice has been an answered prayer. I would like to get more help but I don’t want to give up my time with Mom. It is something I struggle with at this point.
Medicare is now covering her physical occupational and speech therapy, medications and her home health aide through Hospice.

Mom has a Durable Power of Attorney, Medical Durable Power of Attorney and Living Will. She also has donated her brain to Harvard for research when she dies.