Lorraine Larkin
Forum Replies Created
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My husband had a similar experience with the ALS clinics. What really helped so much was having a great palliative care doctor who helped with every side effect and was available locally. I strongly believe every ALS patient should have a good palliative care doctor.
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My husband struggles with comfort in a similar power chair. His robo cushion is on a towel which acts as a sling so we can pull him to the back of the chair. The chair’s seat belt helps some. But for comfort we are always stuffing pillows here and there. It’s a neverending job.
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The ALS assoc has been very helpful with ramps needed and hospital bed and van rentals. The biggest stressor for me is finding good caregivers for my husband who is essentially paralyzed and can no longer speak. I have trained multiple people and if they are not up to the job I have to find someone else and start training all over. It’s exhausting.
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<p style=”text-align: left;”>My husband was diagnosed over 3 years ago. The ALS clinic specialists and doctor were all very helpful, and for us they were over an hour away and over state line. The resource that we found most helpful was my husband’s palliative care doctor. Everyone with ALS should find a good local palliative care doctor. She has made a big difference in helping us navigate many issues related to this disease.</p>
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My husband has ALS and has lost his voice. He has a Smartbox Grid Three. Support has been pretty good and Trinity at Bridging Voice is a big help. That said he is slow in mastering the eye gaze. It takes a lot of energy.
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I would strongly advise finding a palliative care doctor in addition to going to an ALS clinic. We found one for my husband through a recommendation fron our ALS clinic. She has been fantastic and she is local, where the clinic is an hour away. She has made a big difference. Don’t wait to find one.
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- Mucinex helps my husband, you can put it through feeding tube, and cough assist.
Good luck!