ALS Society Support Groups & PMA
In most jurisdictions, ALS Society Support Groups include and welcome PMA sufferers. That is certainly the case here in Ottawa where I have just attended the May 2019 meeting, which is probably about the 12th that I have attended since my diagnosis in October 2017. I would strongly encourage all who are able to attend these meetings. Not only does it help you get a different perspective and helps you to realise that you are truly not alone but it also helps others gain from your own experience and knowledge of the disease.
Since even grouping the different varieties of ALS/MND together, we still do not make a huge grouping, it is all the more important that we stick together to make our voices heard. Although the meetings are moderated by the local ALS Society Regional Manager(s), it is usually very informal. Even when there are specific topics and guest speakers, there is always time to get to know each other and swap hints and tips for dealing with this disease.
There are ALS Society Support Groups in many areas and if you check with your local society, you will likely find one near to you. If not, there are also online support groups, some of which have regular online meetings for those unable to physically attend a regular one. One such group has been set up on Facebook specifically for PMA sufferers and their carers.
At our own local meeting here in Ottawa, I have met many different pALS and cALS and always come away with some new insight(s) and information. It is especially helpful to be able to discuss topics with fellow sufferers who often have more experience and knowledge of the disease than the medical professionals who treat us. This month, I finally managed to meet one of the other two PMA patients in my area.
If there is any way that you can get to one of these meetings, I would highly recommend it. If you would consider supporting these valuable and worthwhile meetings, the 2019 Walk to End ALS is a great way to do so.