DOCUMENT

You can follow Yaz and Glenn’s journey: www.facebook.com/glennsjourney Join the NZ Myotonic Dystrophy Support Group on Facebook www.facebook.com/groups/nzmyotonic/ I’mmarried with two children (Cherisse 9, and Glenn, 6) and I also work part time. Working part time gives me the flexibility that I need with Glenn’s appointments and needs. This last year has been quite rough on us with Glenn being admitted to hospital several times with the most recent admission being for almost a week including a stint in ICU. Rotorua Hospital’s Childrens Unit (and ICU) staff take great care of us when we end up in hospital. Glenn’s cares take extra time, from needing assistance with toileting and showering, getting him dressed, putting his back brace and orthotics on, standing transfers in and out of his wheelchair, and physio sessions. Throughout our journey, we have accessed the MDANZ Fieldworker service regularly and can’t recommend the service enough; they are so helpful and have been an integral part of our journey. We have also accessed the Bradley Jenkin Memorial Fund, which we are incredibly grateful for; the funds went towards getting our mobility van modified to safely transport Glenn. Having the mobility van has truly changed our lives, it is great to be able to go out as a family when it’s safe to do so (due to Covid). We love helping MDANZ and the Northern Branch with events when we can. We have met other people along the way who have become good friends... lifetime friends. Education is key and learning about your own condition helps. I run the NZ Myotonic Dystrophy Support Group and participate in the worldwide Myotonic Dystrophy groups. My biggest piece of advice for those who have just joined MDANZ or have recently been diagnosed - build a support network. This could include family, close friends, especially those who are walking the same or similar journey, your MDANZ fieldworker, or online support groups for your condition. MY SON’S DIAGNOSIS LED ME TO MY OWN Pneumonia Vaccine Funding I t is important our members stay well, particularly through the winter months. It is recommended that individuals with neuromuscular conditions receive vaccination for prevention of pneumococcal diseases, such as pneumonia, due to increased risk of not only becoming unwell but also the increased risk of complications if there is an inability to cough and clear the airways effectively. Pneumococcal vaccines are fully funded for children under 5 however government funding is not generally available for older children and adults. For this reason, you may not be eligible to receive a funded vaccine through your local general practice (GP). Because cost is a barrier to having the vaccine, MDANZ has a reimbursement programme available to members who have a neuromuscular condition. MDANZ will reimburse you the cost of receiving the Pneuomvax 23 vaccine at your local GP. Simply go online to complete the reimbursement form with your details, attach your receipt and you will be reimbursed within five working days. www.mda.org.nz/What-We-Offer/ Pneumonia-Vaccine-Funding