[Susan Swint]

I haven’t heard that tamsulosin is prescribed very often for women, but it was the answer for painful cramping urinary urgency for me, especially for that which comes after standing up. If leaving home for 3 hrs or more, I use protective pads as well as specialty underwear (Knix brand is my preference). Instead of hopping on one foot :), leaning against the sink cabinet gives me extra moments of time.

[Susan Swint]

While on a fairly high and consistent dose of ibuprofen while recovering from a broken collarbone, my husband noted that my night time urgency and frequency were diminished, and my neurologist said that he had other patients report a similar effect. I now consistently take 100 mg morning and night (it helps the collarbone, still) and find it helpful, in conjunction with Kegel exercises and never ignoring signals.

[Susan Swint]

http://www.vLetterinc.com A superior answer for me. This company offers dozens of “handwritten” computer fonts and will even make a custom font based on samples you provide. I use it often to print quick notes to friends where typing would seem too formal. I strongly suggest checking vLetter’s offerings and filling out your own sample to save in case your writing becomes illegible and you would still like the writing to be your own. My other action was to learn to print and ultimately write in cursive with my non-dominant hand–it took about 3 months of trying to write a phrase each day (usually of something I hoped to memorize). I cannot write quickly, but it does not shake and is legible–a good exercise for creating a new mind-body pathway.

[Susan Swint]

I believe there has been some conjecture about association with earlier severe viral disease, such as the 1918 Spanish flu. (My father-in-law developed PD in his 70’s after surviving the flu on a WWI troop ship.) I had both an unusually severe case of measles in the 1950’s and a terrible bout with the flu in 1967-68. It is known many viruses can asymptomatically lurk in our bodies to emerge later from stress or age in a manner similar to chicken pox/shingles.

[Susan Swint]

I’ve been a relaxed lap swimmer, primarily side stroke and crawl, since the age of 3. I was diagnosed with Stage 1 five, years ago with right side tremor; still only on rasagiline and in a drug trial. Last summer I realized I could no longer reliably maintain my orientation in the water and developed instant cramps in my feet if doing a flutter kick. I no longer get in the water alone, stay in the shallow end, and am limited to side stroke on left side only plus breast stroke with arms alone. Dance therapy has helped me with rhythymic movement, though.

[Susan Swint]

I had mild swelling about 5 days out of 7, especially on car trips, and our family is already on low salt diet. Physician put me in compression stockings, remarking that whatever the cause, you need to check with your doctor and not allow the problem to go untreated. A short internet search turned up an academic article linking swollen feet and ankles to abnormal gait in some Parkinson’s patients, where the calf muscles are not exercised sufficiently to move fluid through the lymphatic system.

[Susan Swint]

I began using mannitol, 15 g/dy (one heaping teaspoon 2x/dy in at least 8 oz. fluid) 3 years ago for restoration of smell. Some sense of smell first returned after 2 months, though I had heard it might take 6 months or longer, and has persisted…I cannot smell everything or at every time, but it is a great improvement. There has been only one adverse event when using as a sweetener for peaches and milk. That caused severe stomach cramps that I consider due to lack of accompanying fluid. I am in a clinical trial, so would hesitate to comment on symptoms or disease progression in the last two of these years, but have been grateful for the partial return of smell. Still in Parkinson’s disease stage 1A, rasagiline only (+ trial drug).

[Susan Swint]

Addition to the comment above: I am in the United States and order mannitol from PureBulk.com. Resonably priced; fast delivery; no other ingredients.

[Susan Swint]

Six years after being diagnosed with Parkinson’s and age 79, I still regularly read journeywithparkinsons.com and scienceofparkinsons.com , both by former biochemical researchers in the fields of protein chemistry or PD, one of whom has PD himself. They seem quite clearly written for the layman while being quite accurate. At around 30 years from bench to prescription, I do not expect to see a cure myself, but have felt I could contribute by participation in clinical trials. Otherwise, I watch the internet for sensible information about exercise, coping skills, and diet (line dancing has been great for speed of movement and brain/body coordination). And I think spreading the word widely about early symptoms and early diagnosis are exceptionally important now that possible slowing of disease progress is on the horizon.