Dennis Fossenier
Forum Replies Created
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I had a PEG feeding tube put in a month ago even though I can still swallow at this point. I had a breathing test done and I was at 67%. My doctor here (Canada) said I need to get it done before it drops below 60% or they won’t do it. I don’t use it right now except for flushing it out daily but at least I know it is there when I need it instead of constantly worrying about my breathing status. My wife built me a holder that I wear around my neck and it holds the tube in place in front of me instead of just hanging down.
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We are in the process of trying to decide what modifications to make to a bathroom for me as well as our bedroom. I am still able to walk with a rollator and I shower using a tub bench which I can still get on and lift my legs over the lip with my hands. I am procrastinating because I don’t want to destroy our place which is fairly new. It has a large walk in shower/sauna with lights, radio, etc. in the master bathroom that I hate to tear out since I can’t use it because of the large step up. In the other bathroom on the main floor is a large one piece tub/shower that I use now but once I am in need of a wheelchair then it would not be useful for me.
Because ALS affects everyone so differently it is hard to know what the future holds. Do I rip out all the niceties that we have to install a wheelchair accessible shower that I may only be around to use for a year and then leaving the cost of restoring it all to my wife? Or do I take inspiration from such as you Dagmar and hope for 10 years or more? Congrats by the way on all you have done to keep moving forward.
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I have attended one Support Group meeting which was very small and held outdoors in a park due to COVID. It was more of a introducing yourself to each other session and not a session to gather information on how to deal with ALS. There was only one other person with ALS there and the rest were caregivers or spouses of pALS. Hopefully once this pandemic is over they can get back to regular monthly meetings where a person can share information and experiences.
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I missed this conversation back in July/August but thought I would put my two cents worth in as well. I was diagnosed in Nov 2019 and started Riluzole in December 2019. After about 3 weeks I notice a loss of appetite and all food was tasting bad. My stomach was somewhat upset as well at the same time. After another couple of weeks of the same I stopped taking it for about 3 weeks and everything returned to normal.
I then decided to try taking it with my breakfast and supper instead of the recommended “before meals on an empty stomach”. After about another 2-3 weeks I had the same issues of loss of appetite and all food taking on a bad taste. By this time I had lost 25 pounds and decided that the weight loss would erase any benefits of getting 2-3 extra months from the drug.
Since then I have managed to gain back about 10 pounds but gaining weight with ALS is not an easy thing. Now that I hear that Riluzole may extend life by 6-19 months it puts a new perspective on things. I am wondering if I should give it one more try before I dismiss it forever?  Just another decision to make on the ALS journey.
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My wife and I will be getting the flu shots and pneumonia shots again this year as we have in the past. I had a couple of bouts with Pneumonia a few years ago and don’t need that now. Also last fall we got the Shingrix shingles shots after my wife got rid of the shingles she suffered through in the spring of 2019. She never wanted to go through that again.
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I was diagnosed with ALS in November 2019. We had just gone on a one month holiday to Europe in September which we were thankful we did while I still could walk. Two weeks of the trip was a river cruise where we went daily on walking tours. I was able to join the tours walking with a cane. At times I was behind the group but always caught up when they were looking and discussing some architecture or such.
We have been travelling to Arizona for the winter months for the past 10 years so in January we decided to go even though I was having further trouble walking. We have lots of friends down there and decided it was better to be among friends in nice warm climate as opposed to spending the winter in our home in Canada. I was no longer able to play tennis, ball, pickleball, etc due to my balance issues but was still able to get around and be a spectator. I did not want to just sit at home and dwell on the situation. We ended up having to come back in mid March due to COVID and have been self isolated since then except for occasional visits with our close family.
Upon my diagnosis we were planning on going to Disneyland with our grand kids in the summer and to Hawaii for a couple weeks in the winter of 2020-2021. Due to Covid none of this is possible now.  We have taken some camping trips with our kids and grand kids which we feel are safe since we have our own site and avoid crowds at the beach and such. We have a boat so we can go fishing and watch the youngsters do water sports although I do have to be carried onto the boat at times. I have a walker to get around short distances and a scooter to take hikes with the family.
I feel we need to try to do what we can to get out and enjoy life even though what we can do is limited.