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  • Mark is having a rough time. Today is the first anniversary of his diagnosis. We don't need help at this point. He is still able to walk and do things for himself. He won't allow me to take out the garbage, clean the litter boxes, etc. I think it's because if he does, he'll feel useless. I wish he'd use a walker, or at least a cane more consistently, but he's pretty stubborn about that too.
    Nuts, I am glad your husband is pleased with his wheelchair. All is well here, just really busy with new puppy, and the garden. I am alone in caring for my husband, and am not sure I will find anyone comfortable with his ventilator, so getting tired. I am blessed that I have been a care-giver my whole life, so it is not much of a burden. We have had a beautiful summer, but the leaves are starting to turn. Thanks for dropping in and messaging me.

    Nice of you to think of me! It has been awhile since I have been on. Things have not been so good since Easter. My husband has had numerous bouts of pain. They think a combination of shingles and gout. It has been a long month and at this point not a lot of relief. With not a lot of activity he continues to get weaker every week. I always think about getting on the forum but there are not enough hours in the day!
    Barb asked me recently if I knew how the Chief's appointment went at Duke. We have been thinking of you both and hope all is well. As well as well can be while hanging out with Uncle Lou, but you get the idea!
    We actually sold our original house and built this one because of Tim's disease, so it is an open concept design which means he can fly around here with very little trouble. All in all he does not have to much trouble at all and we have an attendant control on the back for me, which I am having to use more and more. We are waiting to get a head array controller for him as he can only wiggle his right thumb a bit. Having said that he still mostly gets around on his own, even though it is a larger chair. I must say most other guys get chair envy when they see his, and it can be converted to normal tires when he can't motor around on trails any more. I believe you are associated with the VA so can get it, otherwise it is crazy expensive. He loves the riser on it and uses it often.

    Tim's chair is a rear wheel drive, with nobby tires, and it is larger than most chairs. Tim is 6'3" which means that it has a longer seat, and leg rests than most. We got the Toyota Sienna Extra Tall so that he can get in with out touching his head, but he tried another one at the VA that actually sat higher than his. As far as bringing in dirt, I guess it does, but then I don't really have experience with any others. We don't have any carpets, and the flooring is vinyl that looks like scraped wood. Most people don't believe that it isn't wood, but that way we don't have to worry about water on the wood. What Tim does if he has been on some messy trails is drive it on the pavement for a bit to dry off his wheels, or I just hose them off.
    Thanks for your note. Parkinson is no picnic and I sympathize. I insist my wife get out of the house daily for the gym or something otherwise..well I'm sure u most certainly spouses are saints
    I'm looking forward to our first clinic appointment, and it's good to know which specialties will be there. Thanks for the tips about the questions and a notebook--I will be prepared!
    I don't know if there's a different PVA rep for your area; however, since I have done everything by phone or email I don't think it really matters. I do agree, Dr. Bedlack is great. And the team at the Duke Clinic are just as amazing. I was there yesterday for my quarterly appointment and, as it has been every time, the help and care were beyond my expectations. For your May appointment, I suggest you come with a list of written questions for each of the reps you'll meet with; nutritionist, social worker, respiratory therapist, speech therapist, occupational and physical therapists and the doctor. We (well, mostly my wife!) have a notebook that we keep notes in during the appointment and whenever we have thoughts or questions between appointments. It has been helpful to us to be able to keep things in order. I can assure you that while it is very helpful, the amount of info, tips and recommendations you'll get that day is tremendous. Like feeding from a fire hose!
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