I have been diagnosed since June of 2019 with Parkinsonism , probable PSP by a movement disorder specialist. I cycle inside or outside daily. I still enjoy woodworking.. but I have been falling more lately , mostly backward so I now am extremely careful about even one step backward without holding onto something. I take Sinemet at 3&1/2 tabs 4 times per day and two at bedtime with some benefit.
I’m considering trying a higher dose of Co Q 10 in future?
Exercise is about the only thing that is truly beneficial. Keep it up as long as you can.
Do you have a physical therapist? If not you may want to start with one to give you workaround tips as you become more inhibited.
Exercising is good. A word of caution about backwards falls... they can happen when l am standing still or walking forward. I keep a journal of my falls which is helpful for myself & my doctors. There some helpful older post on this site about Co Q 10. Sending hugs... Granni B
Exercise is the most beneficial for PSP. My husband was diagnosed 2017, his mobility went down hill so fast within 2 years that he became wheelchair bound. He fell down like 2-4 time a week. At the beginning of the diagnoses he has Physical Therapist and Speech Therapist but after few session they gave up on him as they feel like the disease was progressing so fast. We felt hopeless then that I kinda accept everything. Then early this year on January I decided to take matter on my hands. I started moving my husband to stand up first then make steps one at the time me holding him. 6 months later he improved a little bit gaining a little of his balance slowly. When had his 6 months routine check up his Neurologist was surprised to see my husband standing and making small steps. She then orders another PT. After 4 sessions of PT we see improvement he can stand for couple of minutes without holding anything or me holding him. He is able to walk on the walker short distance with me assisting him. From wheelchair bound to making steps is just a miracle for us. Exercise does help and I wish the PT didn’t gave up on him early on. There is hope. Don’t give up. My husband speech went declined as well but he speech therapy his speech and swallowing has improved a little. This is a terrible disease, it takes patient, it’s exhausting and emotionally draining. But we just have to do what’s best we can do. Giving up is not an option as long as we still have what it takes to fight. Praying for u🙏🏽 we are in this together even though we don’t know each other. Take care.❤️🙏🏽
Good for you!
Here is what frustrated me in my late husband’s care. The Medicare provided PT had to keep showing “progress” to continue. With a progressive disease, to me, holding on to what you have is “progress”.
Thank you all for your advice and especially your prayers. We also believe in prayer and miracles. I’m currently in my second session of PT and about to start speech rx as well. I have a weak voice and it’s hard for people to hear me particularly my wife. So I’ll try loud ST again.
Praying for all of you.
Welcome to the site, hope you find it as beneficial as I have.
Thanks
My father who had MSA was a cyclist and when he couldn't get on a bike anymore he still used to use a pedal machine from an armchair.
Fortunately I can still ride well once I’m on bike and locked into pedals. I do have problems getting off and on bike but if I take my time I’m usually ok. Thanks for your advice. I agree that cycling is best exercise for All Parkinsons type illnesses including PSP.
Welcome to the group. Know this much - we don't want to be here, but we're sure glad we have one. Exercise - Prayer. Exercise - Attitude. Exercise - Exercise. Exercise - Hope. I think I may have said a time or two before.
Tim
Thanks. Again I agree with everything you said.
Hi WoodworkerRVH!
I'm sorry PSP has entered your family.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
I am not a phisicyan.
During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers
Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.
Hug and luck.
Luis
I’m new on here !
Finally posting!
First time of posting
First time posting on here
Hi I’m new here - my dad has PSP
