The WAMS Foundation needs your help!!! Our recipient this year is Donna Glen, please check out her story below, or donate here.
Hello my name is Donna Glen. I turned 69 last month and have been dealing with MS for 34 years.
In the beginning symptoms were vague and doctors were puzzled. My husband and I were busy raising our 3 young children and I had a part time job. Life was good! In August 1986 I was ill enough to be hospitalized which resulted in a probable diagnosis of MS. I had an elder sister who had been previously diagnosed with MS so I knew it could happen. An MRI several years later showed brain plaques and confirmed my MS diagnosis.
Our lives changed! The kids were 15, 13 and 11. We really discovered what being a family meant. Everyone stepped up and pitched in.
Fatigue and brain fog were constant companions. Eye sight and mobility were compromised. Even getting out of bed was a task. Muscle spasms were nasty. Medication helped but made the mental confusion worse. Cold hands and feet were common and I couldn’t walk bare footed or unassisted. I was very sensitive to cold or heat.
In January 2011 I had CCSVI treatment and was very pleased with the results. My balance was better, my walking improved, and I had more energy. My speech was no longer slurred, swallowing was easier, and the brain fog lifted. The muscle spasms were lessened and I was able to stop taking medication for them. Sleep was also better.
The last few years I am again having trouble with my balance and walking, especially on my right side. My right foot drop is pronounced and the left is getting slower. I now require a walker to get around safely. Walking without my walker can be very interesting. Can anyone say unexpected side trip – “Hello, wall!” Fatigue is once again very present. Muscle spasms are slowly but surely returning. Holding the same position for any length of time causes my muscles lock up. This makes travelling to Alberta to visit my children and grandchildren challenging at best an impossible at worst.
One of the ways I manage my MS is working around a significant number of food sensitivities. This requires me to make a lot of my own food. When I am preparing my food I know the consistency required for swallowing and it has become second nature to prepare it to that consistency. However, I sometimes get an unpleasant shock when dining out. Three years ago I had flare of the Trigeminal nerve that was extremely painful, both from any contact to cheek or eating. Rest and use of a Tens unit helped and I was able to eat. I eventually became pain free.
Living a normal life style is a challenge when things change daily. Every day is very different; I have learned to do what I can when I can do it and not to worry about the rest. I know staying active is important so I do Aqua fit weekly and ride my exercise bike daily and do lots of stretches.
One of my favourite past times is gardening. Over the last few years I have found it harder and harder to keep up with my yard. I have had to cut my vegetable and flower beds back because I just cannot maintain them. Giving up one of my oldest and most loved hobbies has been very difficult.
Two of the biggest enemies to MS are infections and stress. Grief is a stressor. My elder sister fought her battle with MS bravely and well. We lost her to complications of MS in January of 2014. My mother had been in failing health for several years and passed away in October of this year. My faith comforts me tremendously. I do my best to walk through each day and take things one moment at a time.
My grandson has an immune deficiency called Chronic Granulomatous Disease. The only cure is a bone marrow transplant. He is scheduled to have a transplant in spring of 2018 and the National Insitutes of Health (NIH). I would love to be well enough to help look after my granddaughter while my daughter and son-in-law are away from home for his transplant.
The hope of getting another CCSVI or Stem Cell treatment is very encouraging because the days of being able or unable to cope are getting closer together. We estimate the cost of treatment to be around $20,000.00 to $22,000.00 Canadian.