Maxine's interview
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How did all start?
I had a ashi massage and the therapist went a little too deep and tore my vertebral artery. 24 hours later I presented with light-headedness and a sudden excruciating headache. When that resolved I looked in the mirror and noticed my eye was droopy. I gave myself the tests for stroke and nothing else seemed apparent so I thought I was just coming down with something. I went to bed early and it felt like there was air conditioning on one side of my body. When I awoke to go to the bathroom I stumbled and found I couldn't walk. We went straight to the ER where the scan showed 100% occluded clot in my brain stem. I was rushed to a larger hospital in Portland where they specialized in strokes. This all happened August 28, 2016
Do you already have a diagnosis? How long did it take you to get it?
Yes, I received my diagnosis in at Legacy Hospital in Portland when I was transported. 3 Neurologists agreed the massage caused the tear and my symptoms were Lateral Medulla Syndrome or Wallenberg Syndrome. They were very excited at their findings since it is such an unusual disease.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I'm not sure if I understand this question but I was treated for balance and vestibular episodes with physical therapy. While I was in a rehabilitation facility for an additional week I had many therapies including occupational and speech. I continued physical therapy throughout the year and discovered water aerobics as a wonderful and safe means of exercise. Tai Chi has helped with balance and CBD salve has helped with nerve pain. I see a massage therapist every other week and reflexologist once per week. I am adjusting to 'the new me.'
What has been the most useful thing for you so far?
Sharing with others who experienced the same syndrome on facebook. The unconditional support, understanding and platform has been very useful in understanding and applying a variety of modalities others with the same experience have tried. And family and friends who continue to support and encourage me has driven me to get better and keep striving to improve.
What have been your biggest difficulties?
The nerve pain, fatigue, weight gain, and forgetting that I am not able to do some of the things I loved doing like travelling unassisted, hiking, etc. I have addressed these difficulties and compensated as best as I can with water aerobics, tai chi, and my electric trike which is empowering.
How has your social and family environment reacted? Have your social or family relationships changed?
I am very fortunate that I have had the most wonderful support from family and friends alike. None of my relationships have changed although I have had to opt out of a few social activities because of my disability but have experienced a full life up to the stroke that at least I can look back and know I've done so many adventurous things. I am grateful and blessed to have this support.
What things have you stopped doing?
I've stopped hiking, dancing, fast walking (without a walker) and travelling as often where I would go zip lining and experience challenge courses, para-sailing, snorkling, etc. I have however replaced things I had to stop doing with things I can do!
What do you think about the future?
Sigh.....it's different but I still have quality of life. I never expected at my age to suddenly have a disability and be affected preventing me from so many things I used to love.
So far, which years have been the best years in your life? What have you done during them?
good question.....I feel very blessed because at 67 I have to say there are so many bests it's too difficult to choose which years. Happily married, 3 grown independent healthy and happy children, grandchildren, a wonderful career, retirement. Our own home, cars, passions for cooking and crafting, writing and singing. They have all been the best but the first 64 have definitely been far better than the last 3.
What would you like to do if you didn’t have your condition?
Travel around Italy. So many thing!!!
If you had to describe your life in a sentence, what would it be?
The glass is overflowing....drink up and embrace each moment.
Finally, what advice would you give to a person in a similar situation?
Take your time. Try and stay positive, things will get better. Be kind to yourself and gentle with those who love you. Advocate for yourself in the medical community. Know we are here for you if ever you need an ear or shoulder in the Wallenberg Community.
